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Letters From Families Page
Contact us to send a letter, article or recommend resource that you have found helpful, to be posted on this web site.
Straight Talk Speech Therapy Manual Works!
I wanted to let you know our good results from the “Straight Talk” program. Lori Bohman elbohman@earthlink.net Tanzania, Africa
Be A Choosy Homeschooler….like me..!
My name is Jennifer and I am the editor of a new homeschool product review
website. I know, I know, there are many product review websites out there,
right? However, as a homeschooler I found that when I read reviews of homeschool
products on other sites, I didn't know anything about the people who wrote the
reviews. Are their values similar to mine? Do their children have the same needs
as mine? I invite you to take a look at our website at:
Pam shares a devotional written by a man who is disabled, sharing from his heart about disability….
Dear NATHHAN families, My name is Pam. Ziggler98@aol.com
I know a severely physically and slightly mentally handicapped young man who
intensely loves Jesus and is great at encouraging people who are ill.
Author of new children’s book on Down syndrome shares her heart and vision….. Heather heathermomof3@hotmail.com I want to let everyone know of a book called Meet Annie! But first, let me tell you a little about myself and my daughter Annie… Annie was born in September of 2005. I had no idea of the complications she had until after the birth. Even then, it took about 2 weeks until I knew of the severity of her heart condition. Annie has had 10 surgeries, 2 of which have been on her heart. She will have another heart surgery soon and hopefully that will be all, for a while anyway!
Anyway,
after her 2nd surgery, I was very depressed. Any of you that experienced that
feeling of helplessness know exactly what I mean. Well, when people want to get
away from it all, they do all kinds of things. Some drink, hide away, the list
goes on and on… well, I don’t do any of those things. I decided to write a book! I am trying to get my book in the hands of people that can make a difference. I am passionate about this book and hope you will be too.
Granddaughter with Spinal Muscular Atrophy, (SMA) brings great joy to family….
I am a 49-year-old Grandmother and until Lizzy came into my life, I was quite
content being a sporting goods manager and a weekend biker with my husband,
since my kids had all grown up. For Further Information please visit: www.our-sma-angels.com/elizabeth www.caringbridge.org/il/elizabeth https://www.cafepress.com/b4sma/2107700
Jonathan Opalka Letter from Deb Opalka, Jonathan’s mom.
I had to laugh when I read the little article in your last newsletter about our
Jonathan. I had written it around Christmas time, ‘07 when he was still scooting
around on his bottom. I said he was just taking a few steps on his own but that
it must be “so scary for him” because of his visual impairment. (He has no
center vision). God Bless You all for your service in Christ. Deb Opalka.
What a wonderful blessing God has given us - Simon Gabriel Scheck! Patrice and I flew to San Francisco on Sunday, Aug 10, met Simon's birthparents at our hotel, and were given all the information necessary to take care of him. Simon, diagnosed with Prader-Willi Syndrome, is entirely nourished through a feeding tube in his stomach called a mic-key tube. The birthparents left Simon with us that first night so we could practice. The next morning we all went to the adoption agency together - his birthparents signed the relinquishment papers and we accepted Simon as our own.
Not six hours later however we had to hit the emergency room because his mic-key
came out! Neither we, his birthparents, nor the doctors on duty could get it
back in. We ended up getting a temporary smaller-diameter tube in order to feed
him. In the meantime, we had wonderful interaction with his birthparents. We
scheduled an appointment with the surgeons in the morning to place a new tube,
but that didn't work out either. Unfortunately, the next step would be to put
Simon under general anesthesia to open up the hole. Due to the considerable
complications of Prader-Willi with general anesthesia we opted out of having it
done in San Francisco and set up for the procedure when we returned to Colorado
the next week. (Back home, they got us in quickly and inserted the tube without
needing anesthesia, another gift from God.)
Next was the immediate care our pediatric physician gave us in Colorado. She got
us in the same day we had the mic-key tube replaced and set up for all the
specialists Simon would require. Adoption is so wonderful, but
Simon is doing great! We're almost getting enough sleep every night and he just
had his 4-month checkup and vaccinations...and he cried. (This too is a miracle.
When our son Christopher, also with Prader-Willi, was that age, he wasn't strong
enough to cry.)
CHASK, thank you for being a part of God's plan for our family, May God bless you as he has blessed us! Samuel and Patrice Scheck, Highlands Ranch, Colorado
Mom feels like homeschooling all of her children, including a son with Pervasive DD, might be too much Please reply to chaskinfo@aol.com Homeschooling with PDD I have been homeschooling for 7 years. I am happy to serve the Lord (and my children) in this way. I am concerned about the siblings of my special needs child, specifically the oldest brother. It can be very aggravating to spend all day with a sibling whose behavior is oftentimes disruptive, disrespectful (as it seems through the eyes of a nine year old brother), loud, out-of-control and so on. Not every day is bad. Some days are great, but some days can seem so dark, and long, and challenging, that I wonder if my older child is living with too much stress on a day-to-day basis. I’d hate to give up homeschooling, but I want to do what is best for all of my children, for each of my children. Academically they are excelling (both boys are two years ahead). Their fledgling faith is growing, and they do love each other. I guess the biggest stress is that my nine-year-old boy, who is very rigid in his thinking cannot understand that his eight-year-old brother’s behavior acting out, verbal outbursts, impulsive reactions etc.) are not personal. They are symptoms of his brothers "invisible disability"; Pervasive Developmental Disorder-Not Otherwise Specified. This is an umbrella term for a little bit of everything, but not enough of one thing to have anything! I have been longing to talk to some families that are equally yoked in faith and lifestyle to share ideas with and hopefully tell me that I am not ruining my children. I want to please the Lord and serve Him in all things and want to be sure that I haven’t fallen more in love with the "idea" of homeschooling than I have with obeying my Lord. Is he telling me to send my oldest child out of the house to public school? Or am I so wrapped up in insecurity (and Satan has had me here before) that......oh, you can see where I am going with this.....around in circles. Thanks Erin
Help for new homeschoolers of children who have Angelman Syndrome. I would like to avail myself to any parent of a child with Angelman Syndrome who is considering homeschooling. I homeschooled my son for twelve years plus, (graduated in 2001), and it would be my pleasure to be able to be an encouragement to parents just beginning the journey. Beth Wiechman P.O. Box 301 Sedgwick, KS 67135 (316) 772-5464
Working from home ideas?
In need of a resource for a picture Bible...
A Message from Diane MacBeth- A NATHHAN Founder Diane is raising Robbie, a 32 year old "adult" with Down Syndrome.
Homeschooling With 19 Children….
Concerned mom looking for ways to introduce the idea of a
monthly period to her special needs daughter...
“...God decided that this child with Osteogenesis
Imperfecta type II would survive and thrive…”
That Egg and I - Jacob Bushnell
Remember the unwanted embryos in the last NATHHAN / CHASK
NEWS with possible special needs? Praise the Lord for His Faithfulness! What a blessing to see Him at work in this powerful way! Our blessings go out to the family! ''No matter how
severely multiple-handicapped a body is, as long as the heart beats, we have a
duty to respect and serve this life, for life is the most precious gift we
receive"
Christian in Muslim country seeking help for families
dealing with special needs. Kristen
Handwriting Instruction Service Provider
Blog entry by mom who has adopted a baby through CHASK! I just wanted to let you know that I wrote a blog entry today about CHASK and our daughter we adopted. I put the link to your website on my blog site and am hoping that it will generate some interest. I include CHASK in my blog entries regularly. We are so thrilled with all that you do to help give all children the "right-to-life" Thank you for your hard work, tireless efforts, and great example. We are always encouraged by your letters and updates. God Bless, Elizabeth Goulding Our Family Homeschool Blog: http://www.homeschoolblogger.com/HouseFullofJoy “The Hamburger Story” by Ruth Mast Yesterday was one of those “work outdoor times”, so not having the time or energy to cook, it was decided to have our son Lyle (with special needs) grill hamburgers. Dad had picked up a smoker grill at a thrift store and bought a new rack for it. Now Lyle was itching to try it out. He cut up some pear branches to use for smoking, anticipating some delicious burgers. At suppertime, Lyle brought in a plate of juicy burgers wafting with the wonderful aroma of smoke. We quickly built our whoppers. The taste was great! But……. Lyle wasn’t so happy with his treat. “Something is gritty in here,” he said… “Maybe the turner touched the dirt.” Michelle and Mom split a second burger and proceeded to eat (without a bun). Hmmm….this one was gritty too. Michelle looked down and declared, “There’s legs on my plate!” Rhonda quickly tore open her sandwich and screeched, “There’s legs and a BODY in mine!” Quietly Lyle stated, “There was a mud dauber nest in the grill lid. Maybe the heat made it fall down.” A quick inspection of the burgers revealed the HEAD, too! Mom was struck funny and began to laugh and laugh. Minutes later, after using a brush, running water, and a microwave, Lyle chewed his burger and declared, “This tastes pretty good!” Trevor's Sweetheart! By Debbie Mills “Do you have a sweet heart Trevor?” I was half teasing and half cajoling him for information as we drove down the road in my car. He sat in the passenger seat giggling and admitted that “yes” indeed he did have a sweet heart! Ha-ha! I thought, wondering who she could be. “Is she pretty?” “Is she tall?” “Is she nice?” I asked, thinking it was a particular girl he knew at St. Madeline Sophie Center (SMSC) adult day program. He nodded and continued giggling. “What’s her name, Trevor?” I queried. At that point he just smiled and turned his head away from me to look out the window. “Hmmmm….Trevor has a sweet heart…” I mused. As the SMSC Valentine’s Day dance approached, we had caught glimpses of Trevor attempting to dance in the privacy of his bedroom. He was always a wallflower and never a dance-participant at these social events, yet I knew in my heart that Trevor really did want to join in the fun with his friends. So thinking that I could help him get over the fear of dancing at the party, I asked Trevor if he wanted me to come to the Valentine’s Day dance with him. And to my surprise he said an enthusiastic “Yes!”. He usually didn’t want me to be at SMSC. St. Madeline’s was his place and in his mind, my place was at home . But this time, he really wanted me to come. “Oh darn!” I thought, “I’ve got a million other things to do today.” That morning as I helped him get ready for his day, Trevor insisted upon wearing his black church pants, a hot red and orange dressy shirt and his church shoes. “Okay….this is different,” I thought. As he got on the bus to go to the program, he was excited to tell his friends that his mom was coming to the Valentine Dance. And as usual, they all laughed hysterically about it, as the bus departed. A few hours later, I left for the party wearing my “church” clothes, too. I arrived to find St. Madeline’s beautifully decorated with red, white and pink balloons. Tables were set with festive place settings and centerpieces. The staff was serving lunch to the consumers and their guests. I found Trevor at a poolside table sitting with some friends, including the one whom I suspected might be his sweet heart. They had been friends for quite a few years, even before SMSC. Her parents had been part of our Special Children support group. She is the same age as Trevor, their birthdays falling in the same week. She also has the same interest in cars that Trevor has. She was “tall”. She was “pretty”. And she was “nice”… “Yup!” I thought, “Gretchen, must be the one!” Shortly after lunch, the DJ arrived and the party began with the sounds of rock and roll! Trevor got so excited that he jumped up, and grabbed my hand. We literally, ran down to the Giho room where the loud music was coming from. Upon entering the auditorium, I noticed that something very different was going on in there on that dance floor. The first thing that I noticed was all the consumers and staff in a dancing frenzy! Upon second look, I noticed the uniqueness of each individual. There were wheelchairs with whirling passengers and people rockin’ with their walkers. Dancers gyrated in pairs and groups or moved to the music alone, while others slipped out of their wheel chairs and “stood” on their knees to move in time to the beat. Then there were the “smooth movers” gliding across the floor, twirling and dipping with their partners. Never before have I seen a group of people get to that level of excitement and action so fast; AND without the aid of intoxicants. The fun of the event was intoxicating enough. It was wild! I asked Trevor if he would like to dance and we tenaciously stepped into the mix of people. We held hands and sort of bounced at the knees. Trevor and I both laughed and enjoyed being part of it all. This was a first. During the break, it was time for sweet heart photos. We had our picture taken, then I suggested that he and Gretchen have one taken together, and they did. The music began again and so did the energetic dancing. Near the end of the hour the music slowed down. Lights were dimmed as the DJ announced the last song, a recording of Anne Murray singing “Could I have this dance?” Trevor and I stepped on to the dance floor, he slipped his arm around my waist and held my hand. We swayed to the music, my eyes welling up with tears as I listened to the lyrics… I'll always remember the song they were playin', The first time we danced and I knew, As we swayed to the music and held to each other, I fell in love with you. My thoughts floated back in time to when I first held him in my arms as a little baby boy. I fell in love and knew that my life would never be the same. I’ll always remember that magic moment, When I held you close to me, ‘Cause we moved together, I knew forever, You’re all I’ll ever need I reflected upon all the growing years between the then and now, remembering all the love, the daily care, and assistance that has been required to bring Trevor into adulthood. Could I have this dance for the rest of my life? Would you be my partner every night? When we’re together, it feels so right. Could I have this dance, for the rest of the night? I thought of all the continued care that he will need every day for the rest of his life. And as the words of the song asked for a lifetime commitment, my heart burst with love for my son, knowing that we would be dancing this dance for a long, long time. The dance ended. We got into my car. As we drove down the road, I asked Trevor if he had a good time at the dance. He smiled and nodded that he did. I was still wondering about his sweetheart. So I asked him directly, “Trevor, is Gretchen your girl friend?” He laughed at the prospect and responded with an emphatic, “No mom, I don’t have a girlfriend! YOU are my sweetie!” He had told me this before, but I guess I didn’t really believe him until then. I've read your piece, "Maid or Mother" with interest. I don't know how you've survived this all, that long. But many do and many disappear also, so you'll get lot's of mail now I bet! They are miracles for sure and it's always so good to know that we are not alone in this. Here is a therapy link that I used for our little girl, Miranda. It worked so well and actually fast, but then every situation is different. Although they claim it works fast always, depending on a few things. I'm very excited to be able to pass this on. I didn't get extra help, only the information of where to find the books, etc. And it is expensive but well worth your money! www.theraplay.org Thank you once again! god Bless you all, Peter and Carrie VandenBurg P.S. The picture on the cover of your last magazine was just adorable! :) Greetings in the name of Jesus our Lord! We need some help here...I know a woman who wants to relinquish her parental rights on her 6 year old adopted daughter who shows signs of attachment problems. My husband & I are considering to adopt her. She was adopted by the couple from another country when she was 17 months old . The mother is overwhelmed with her life situation and the special needs child just has become her target. I have read that conventional therapies don't help RAD children. If she is assessed to have RAD, what type of therapy is successful with these kids? Is there hope for a child with attachment issues? Is there still anything like this Hope For Children Act to help someone like us in adopting a special needs child? (We were planning on doing this privately, if that is possible. We are waiting for a lawyer to get back to us. We contacted 2 different lawyers that we got off your website link.) I doubt that she has RAD but I am not a trained therapist. I just see the girl longing for a mother, as she is not loved and accepted by the adopted mother, and never was. Please pray for us to have wisdom and to hear God's will in all of this. Thanks for any help you can give! God bless, Diane. Editor's Reply: Dear Diane, Thank you for your letter. The question would be, is whether the daughter would show attachment symptoms after she has been in your home as her authority figure for awhile. If the child is truly attachment disturbed, she would not be a good project, unless you are ready and willing to accept the consequences of living with a child who will never be truly attached. Wishing a child to recover from attachment problems will not guarentee recovery or satisfactory ability to healthfully live within a family without causing major upheaval. If she is simply special needs and not making progress and a target for mother's failure, then a year or two or more would show great improvement in the daughter's ability to obey without argument, accepting physical affection, not being obnoxious to siblings and returning emotional kindness. (such as doing kind things for others, initiating special drawings for mommy, ect..) Love, Sherry Bushnell - NATHHAN /CHASK Dear CHASK; Thank you for your work in stopping the injustice of abortion and prompting birth parents in crisis to seek your help. I deeply appreciate your work because I am adopted, and through organizations like yours, children-who cannot have the voice to provide themselves and equal opportunity for life- have a voice. Although I am not a child with special needs, my sister and I were blessed with life through an adoption agency. I researched your organization for a paper i wrote for my Faith and Justice class at De Smet Jesuit High School in St. Louis. My assignment was to find an organization that works to end an injustice that is particularly important to me, and I thank you for your information. I was glad to get to know your organization and I hope that you and everyone involved in your work will continue to be blessed by God. Sincerely, Matt Nahrstedt Mom with 2 ADHD boys: We have two boys we adopted from Russia - ages 8 & 10. They both have ADHD and the older one is very developmentally delayed. I am having difficulty with managing free time. They seem to only find things to get into trouble with when they are playing alone. Do you have any suggestions of materials that discuss how to structure life and play outside of the time we are in school? I am somewhat organizationally challenged myself so this has been challenging. Thanks! A Circle of Love By Cheryl Haskell Whitten Here is a story I wrote about our son, Jimmy, who has Down Syndrome. The immunization clinic waiting room was packed. Mothers sat on hard plastic chairs, trying to corral their children with low spoken words. The television blared a loud dialogue, and children’s voices filled the air with a din that ebbed and flowed as parents tried to hush them. None of the mothers there were there because they liked it. No mother worth her salt likes to see her child hurt for even an instant, but they all felt that the vaccinations were necessary to keep their children healthy. Older children sat nervously, knowing what was going to happen, but the little ones played in blissful ignorance. I am sure that some of them noticed that some of the children who walked through the door on the left side of the room returned whimpering, while their mothers tried to wipe the tears away. Sometimes the sound of screams could be heard coming from somewhere beyond that door. David sat with 7 of our children in that waiting room. The older ones were quietly bickering with each other, but 3 year old Jimmy was unaware, and chatted happily with Daddy or spent his time flirting with other babies. Jimmy has Downs Syndrome. We adopted him when he was 7 weeks old. He was born with several complex medical conditions that required close attention and ‘round the clock’ care. Although we did not require it of them, all the children had learned to listen for the apnea monitor, to clear his airway when he had reflux, and to alert us when the colostomy bag needed attention. Thankfully, most of these problems were resolved by surgery when he was almost a year old. Helping to care for Jimmy’s needs sealed a tight bond between him and the older children. When our family was called to go through that door, some dragged their feet
and had to be hurried along. In the back they lined up for their shots, oldest
to youngest. Some took them in stoic silence, frowning or wincing. Others
whimpered a bit. Emily cried for a couple of minutes then calmed down. When the shots were given, Jimmy did not scream or fight. Encircled with love, he winced and then flashed a smile at his loving siblings. Home schooling mother and doctoral student is looking for parents IN TEXAS who home school children with autism spectrum disorders (ages 6-11 years) to complete an ANONYMOUS questionnaire for her dissertation. Please visit www.adaptedpeconsultant.com for more information. If you choose to participate, you can receive a free booklet containing easy-to-use physical education activities for children with autism. Hello. We are Charles and Vivan King. We live in South Arkansas. Charles is 54 and Vivan is 49. We have been married for 30 years. Charles is retired from International Paper Company, his trade being a machinist, and Vivan has always be a stay-at-home mom. We have 5 children at home. Altogether we have 13 children, 10 who are adopted and 3 biological. Let me introduce you to the ones at home: Kimi is 16 years old. We adopted her from Texas when she was 8. She has fetal alcohol syndrome and Down syndrome, but is very high functioning. She is so sweet and helpful. Bethany is 12 years old. We adopted her from California 5 years ago. She has cerebral palsy; wheel chair, total care, but gives lots of effort to help. She has some speech but is hard for some to understand her. Preston is 11 years old. He is a shaken baby. We got him when he was 2. He doesn’t speak but has a laugh and a smile that makes up for it. He is total care. Carson is 23 months. He has cerebral palsy with cleft lip and palate. We got him August 28th through CHASK. He is doing really well. He has adjusted well and is learning to entertain himself (not cry and scream so much). He is gaining weight. He has some upcoming surgeries. The first one will be to repair his nose to open his nasals. Addie Mae is 8 years old. We adopted her from Alabama. The Bushnells, Tom and Sherry, from NATHHAN called us about her 6 years ago. We brought her home when she was 1. She is Cytomeglovirus CMV. She is total care but has eyes and a smile that no one can resist. She is tube fed as well. Isaiah is 2 1/2 years. He is from Texas. He also is CMV but gets around in a walker. He is Hispanic and has eye lashes an inch long. He is a very happy boy. We have wonderful workers that help us with the children. Our older children who are on their own are very supportive. Our home is a 2 story wood frame on 6 acres in the country. We have a milk cow, milk goats, geese, dogs, and cats. We raise a large garden. We have 7 bedrooms, 3 baths, 2 kitchens and a playroom, schoolroom (we homeschool), living room, 2 wheelchair ramps and large decks. The children love being outside. They have their own bathroom adapted for their handicaps that includes a large shower with a bath chair, changing table and a lift. Bethany and Preston share a room and have a ceiling lift in it to help in getting them in and out of their wheel chair and into and out of bed. The rooms in our house are large enough that we can have some of them in the kitchen to watch or let them be a part of what we are baking, cooking, etc. Though they may not have use of their hands, they still enjoy being in there with us. We have an above-the-ground pool that the children love to swim in. We are in the process of getting a ramp, deck and lift added on to it, as some of the children are getting bigger. It will be a wonderful asset in help. We live a simple, plain life, with lots of children to keep us young. We believe in good nutrition and natural health products to add more quality to one's life. We have a van equipped with a wheelchair lift. The children see several doctors at Arkansas Children's Hospital in Little Rock. It is a very wonderful hospital. We have a wonderful doctor in town as well that loves the children and is very helpful in all their needs. We have therapy services available for the children. Charles and I keep updated and informed on services, therapies and support groups that will help us help our children at home. We want to learn all we can to do what we can for them at home. We take family trips or go on small outings. They also enjoy the farm animals and heading out with us when it is feeding time. Our family is not wealthy, yet we believe God has led us in this path and He meets our every need. Some of our children are in contact with their birth parents by letters and pictures. These children have touched our lives as well as those they come in contact with. We have learned so much from them. Hello. We are Charles and Vivan King. We live in South Arkansas. Charles is 54 and Vivan is 49. We have been married for 30 years. Charles is retired from International Paper Company, his trade being a machinist, and Vivan has always be a stay-at-home mom. We have 5 children at home. Altogether we have 13 children, 10 who are adopted and 3 biological. Let me introduce you to the ones at home: Kimi is 16 years old. We adopted her from Texas when she was 8. She has fetal alcohol syndrome and Down syndrome, but is very high functioning. She is so sweet and helpful. Bethany is 12 years old. We adopted her from California 5 years ago. She has cerebral palsy; wheel chair, total care, but gives lots of effort to help. She has some speech but is hard for some to understand her. Preston is 11 years old. He is a shaken baby. We got him when he was 2. He doesn’t speak but has a laugh and a smile that makes up for it. He is total care. Carson is 23 months. He has cerebral palsy with cleft lip and palate. We got him August 28th through CHASK. He is doing really well. He has adjusted well and is learning to entertain himself (not cry and scream so much). He is gaining weight. He has some upcoming surgeries. The first one will be to repair his nose to open his nasals. Addie Mae is 8 years old. We adopted her from Alabama. The Bushnells, Tom and Sherry, from NATHHAN called us about her 6 years ago. We brought her home when she was 1. She is Cytomeglovirus CMV. She is total care but has eyes and a smile that no one can resist. She is tube fed as well. Isaiah is 2 1/2 years. He is from Texas. He also is CMV but gets around in a walker. He is Hispanic and has eye lashes an inch long. He is a very happy boy. We have wonderful workers that help us with the children. Our older children who are on their own are very supportive. Our home is a 2 story wood frame on 6 acres in the country. We have a milk cow, milk goats, geese, dogs, and cats. We raise a large garden. We have 7 bedrooms, 3 baths, 2 kitchens and a playroom, schoolroom (we homeschool), living room, 2 wheelchair ramps and large decks. The children love being outside. They have their own bathroom adapted for their handicaps that includes a large shower with a bath chair, changing table and a lift. Bethany and Preston share a room and have a ceiling lift in it to help in getting them in and out of their wheel chair and into and out of bed. The rooms in our house are large enough that we can have some of them in the kitchen to watch or let them be a part of what we are baking, cooking, etc. Though they may not have use of their hands, they still enjoy being in there with us. We have an above-the-ground pool that the children love to swim in. We are in the process of getting a ramp, deck and lift added on to it, as some of the children are getting bigger. It will be a wonderful asset in help. We live a simple, plain life, with lots of children to keep us young. We believe in good nutrition and natural health products to add more quality to one's life. We have a van equipped with a wheelchair lift. The children see several doctors at Arkansas Children's Hospital in Little Rock. It is a very wonderful hospital. We have a wonderful doctor in town as well that loves the children and is very helpful in all their needs. We have therapy services available for the children. Charles and I keep updated and informed on services, therapies and support groups that will help us help our children at home. We want to learn all we can to do what we can for them at home. We take family trips or go on small outings. They also enjoy the farm animals and heading out with us when it is feeding time. Our family is not wealthy, yet we believe God has led us in this path and He meets our every need. Some of our children are in contact with their birth parents by letters and pictures. These children have touched our lives as well as those they come in contact with. We have learned so much from them. Dear NATHHAN Family, The story "It's a Boy" by Angela Chetta in the fall 2005 issue hit some old memory strings for me. During the early winter of 1985, I already had 1 son who was to turn 1 year old in March. He was my second child. My first was a pre-mature still born girl, 1983, Jessica Denise. I had a very rough pregnancy with my son and lost an excessive amount of blood during a dangerously bad delivery. The last thing I was planning on was another pregnancy anytime soon. God had other plans. I remember being in shock and crying that morning when the test showed positive. 2 days later my fight for my baby began. While lifting my son from his crib, I almost fell over due to a stabbing pain in my lower abdominal area. I began passing clots and rushed to the ER. The doctor told me I had at least a 70% chance of losing "it" over the weekend. The next Thursday, I went for my first pre-natal check. The doctor informed me that by all indicators, I had lost the baby. I refused to accept that so he had me do another test but had a tentative appointment for "clean-up' at the hospital. I told my husband that I knew I was still pregnant and I wouldn't give up. The next day, I called to get the news - I was right!! If I had accepted the doctor's first diagnosis, my child would have been aborted during the procedure. I was warned of possible issues and watched closely. My glucose levels were a constant battle but otherwise things went well until the 8th month. I began experiencing pain a few nights but nothing else. At 1 month to delivery date, I delivered my second son. 1 month early and he was 6 lbs. 4 oz. and 18" long with an average head, chest & shoulder measurements. The Cord had been wrapped around his ankles but the only "side effect" was bluish feet for about 3 weeks which also turned inward severely until he was three years old. My delivery was accompanied by above normal blood loss, but I recovered fine. My second son is now 20 years old. He was born was epileptic and acquired a brain injury as a toddler. Other then that and a slight asthma & constant allergies he is fine. Davon has lived with his challenge; we as a family have worked to make his life as good as possible. "Ou family" includes Davon, Brandon (older brother) Samuel (3rd son) and myself and their step-father. Their biological father thought Davon would be better dead than live with "mental retardation" and epilepsy (plus occasional irregular cardio) - he also caused the injury. He is no longer in our lives. Bottom line.... contrary to some people's beliefs, abortion isn't the answer to a risky pregnancy. God is! My 3 sons are miracles out of 13 confirmed pregnancies and a few questionable ones. No more possible. we have been through multiple medical issues with all three sons and almost lost Davon in the fall of 1999 and Samuel 1995. God chose to keep them here with me. God has the final say in out existence, no the doctors. Sincerely; Rexanna Price 532 S. Mission Ave. Tahlequah, OK 74464 P.S. Have a blessed Christmas & New Year! NATHHAN Staff; First of all, I am blessed to be a member of a compassionate homeschooling support network. I am working to get a resource network for families with autistic children to get my to my resources the Lord has blessed me with to bless other homeschoolers or families who want to begin to homeschool their autistic child. I am praying for a name for my Autistic Homeschool Resource Network. Well, I grew up in Indianapolis, Indiana and I had a sister with a learning disability, and who was in special education. She had a friend that use to come over for a sleep over party who had Down Syndrome, emotional disabilities, and just learning disabilities. I like them to be called challenges in my vocabulary. I see my son Daniel fighting the lion autism everyday with faith and courage. Never really thought why we named him Daniel, but now I see a strength and a vision. Daniel 's articulation still is highly improving. I do articulation activities and drills with him. Daniel got evaluated by his speech therapist, and I set goals with his therapist every six months. He takes occupational therapy for his Sensory Integration. I have so many resources for language and speech skills that are fun learning material that I have used and also Daniel's speech therapist has used materials from an autism resource network. I have also used the Alpha and Omega homeschool curriculum workbook and used my own ideas to teach a skill. I have used Joyce Herzog's Scaredy Cat Reading to teach the letters of the alphabet in order and learning to identify the uppercase and lowercase letters. Joyce Herzog's Learning products and services has a Christian perspective. I have background information about her, the Lord has given her a lot of wisdom and is a very gifted educator, author, consultant and speaker. If you'd like to know more about Joyce Herzog, contact Connie Swan @ 7808 Scott Ave. Brooklyn Park, MN 55443. I 've learned organization skills during the past 2 years of homeschooling. I was blessed with a nice filing cabinet, dry eraser board and storage for my materials. I have a binding folder for some of Daniel's programs and a system I found helpful and that someday I can share with you and with anyone else. This system just helps me to see where Daniel's at and what he has mastered and needs to work on. My ministry started with my sister Jane, her special friend and my son Daniel. Lowell Glick which the doctor told me I couldn't have children. I know Gad has a special plan for me and my son Daniel. If you need to contact me, my address is: N 3097 County Road A Columbus, Wisconsin 53925 1(920)296-9308 Your Sister in Christ Jesus, Donna Glick P.S. I would be blessed if you would put me on the outreach for autistic homeschooling resources for families in need. The only requirement is the cost of postage, and as I copy things on my copier, also the cost of copies because of the ink cost, but that will depend on how many copies. Thank you for your time and your ministry. May God Bless!! Staff of NATHHAN, I thank God for a blessed homeschool network. I am a parent of an autistic son Daniel. Daniel takes occupational speech and it will be his last physical therapy visit the end of this month. I really believe that if I wasn't homeschooling my son Daniel, he would not have conquered so many giants or mountains in his life. I decided to take over when a ABA-Program here gave me negative hopes also I've been told by a pastor I couldn't do these myself. I believe there is a lot of parents out and about that they don't do homeschool with children with challenges because of negative input by in-laws, professionals and people in general. If I'd listened to people and no my Lord Jesus, I wouldn't have seen all the wonderful things Jesus has done for Daniel. He is writing both his uppercase and his lowercase letters, identifies the letters, identifies if the letters are uppercase or lowercase, counts from 1 to 100, identifies numbers 1 to 100 in order and out of sequence, learning to solve addition and subtraction facts with manipulative such as math cubes, telling time, using the Judy Clock. the Judy Clock is what I purchased in one of my educational materials catalogs. I am using Joyce Herzog's Scaredy Cat Reading System and Abeka Book Basic Reader Phonic program to teach Daniel to read. He seem like he is learning to read with this program I am using; but all children are different and they all learn different. I read a book on children's learning styles by Cynthia Ulrich. They are the way they learn and how to discover and teach your child's strengths and every child can succeed making the most of your child's learning style. She hold's a Masters Degree in education and she is also a Christian. She Spoke on Focus on the Family, Dr. James Dobson's radio broadcast. Well, getting back to Daniel; he's using therapy putty and "Play Doh" to strengthen his hands and help his fine motor skills. I've seen big results with his hand writing by doing this therapy activity for part of our curriculum. We are doing lots of Sensory Integration and Body Awareness also. All of the Body Awareness dealing with children with sensory issue, helps these children with autism to focus, relax, and calm down. I've noticed with Daniel if you don't stop and do sensory activities, you have problems accomplishing anything in school. Like I said, children with autism need more activity and let them bounce on a big ball and go outside and swing if it's nice out, jump on a small trampoline, body pressure, body activities and use scooter to do sensory input. The activities help Daniel physically with gross motor skills. I believe these help him to do so well with his physical therapy progress. Thank Jesus for getting him discharged out of therapy and he is now only going to physical therapy for an evaluation in the fall next October. He's only taking occupational and speech therapy. He is moderately impaired in his psychological process and not severe anymore. Daniel is answering "What?" "What are you doing?" and "Who?" with 100% accuracy. He's working on letter sound and most of his articulation skills been 90% to 100% accuracy. Praise the Lord! Thank you Jesus! My future goal if the Lord Jesus' willing, is to write a book to encourage others in the things I've learned what Jesus has taught me through homeschooling. I can go on and on with Daniel's accomplishments but I know one thing: nothing is impossible. Thank you Jesus, I couldn't do it without your Holy Spirit. May God Bless you, Donna Glick & Daniel P.S. If I can help let me know, I believe Jesus has a ministry for me, to reach children with autism and parents that are homeschooling or thinking about it, but need encouragement. N. 3097 County Road A Columbus, Wisconsin 53925 (920) 296-9308 (920) 296-9209 Dear Tom and Sherry, Thank you for sending me the Fall/Winter 2004-05 and Spring/Summer2005 NATHHAN News. I was pleasantly surprised to receive both issues, as I did not request them and have not purchased a member ship yet. I appreciate having received both issues. I received the Fall/Winter issue with the CHASK book and Straight Talk manual I ordered. I received my Spring/Summer issue today. I have greatly benefited from reading both NATHHAN News issues, the CHASK book, and the Straight Talk manual. I am planning to purchase a membership to NATHHAN as soon as I am bale to put aside the $25. In both issues of NATHHAN News were letters about PDD-NOS. What is it? Most of what I have read in the letters describes my nine year old daughter Amelia. She will be sweet, loving, and helpful one minute and turn into an angry bear the next. Most of the time I don't know what causes the change. I thought she might be bipolar. Two family members on my husband's side are bipolar. The letters about Fragile X Syndrome also describe my daughter. Is there a relationship between PDD-NOS, Fragile X Syndrome and bipolar, or do they have similar symptoms? As Amelia grow older, she has more and more angry outbursts for seemingly no reason. She also has some learning difficulties. I am homeschooling her and her 12 year old gifted brother, Michael. I also have four other children/. Joseph is 6 and has Down Syndrome. Dorothy is 3 and possibly gifted. Rebecca is 22 months and Peter is 6 months. Joseph is at a 2-3 year old level mentally. He has great difficulty communicating. Many things frustrate him and he lashes out at his siblings in anger. He bites, kicks, pushes, hits, screams and throws things. He likes to destroy things, especially his siblings things. Spanking him makes his behavior worse. Putting him in 'time-out' only removes him from the situation for the duration of his 'time-out'. My husband and I haven't had much success coming up with other ideas on how to communicate better, but it's a very slow uphill battle. My husband works 14 hour days, 5 days a week, away from home, so most of the discipline and instruction is administered by me. Joseph can be very loving, but most of the time he's mean and angry. Rebecca and Peter are afraid of Joseph. The others usually deal with Joseph by doing back to him what he has done to them. My husband and I don't condone it and try to get them to deal with the behavior in other ways. Doing back to him what he has done to them only gives him the message it's ok to do it. They tell him that it hurts and he laughs. How can we get Joseph to stop his angry and destructive behavior? Sincerely, Dena Any help or advice you might be able to give me would be greatly appreciated. Please send any help or advice to: Dena Motz 10320 N. Lunar Drive Flagstaff, AZ 86004 (928) 526-5168 motzrd@msn.com Dear Nathhan, I sit here at my computer at 6:30 AM, desperate for guidance, or at least support. I have 3 young boys. The eldest (5) and youngest (1) are both advanced for their ages and very happy/secure. the middle child, named Truson (3.5 years) is neither. He does not speak words, but rather babbles Da Da Da all day long. He yells and screams every hour of every day, and wakes up through the night numerous times with blood-curdling screams (I do not exaggerate). My husband's work requires him from home often 11+ hours a day, and I desperately need help. Truson had been receiving speech therapy through Babies Can't Wait til' his third birthday, at which point everyone involved (for, being government, there are always lots of people involved) were encouraging the excellent spec. ed. pre-school program offered here in Georgia, wherein my son would spend the majority of every day at a local public school with other special needs children. Upon visiting such classrooms, I was not sanguine as to its promoting Truson's speech development, and thus I opted against such assistance, much to the disappointment of all officials connected with the system. Rarely a day has passed without my wondering if I should reconsider and place Truson in such a program. Finally, I decided that, even if I can't help him (and I was/still am quite skeptical as to its helping him to talk), as long as it won't harm him, at least his going away for 5 days a week, will restore sanity to my mind and peace to our home. Alas, I waited too long, and now the earliest possible date for his admission is Sept/Oct. he has, by the way, been evaluated by a developmental psychologist and a developmental pediatrician, neither of whom are able to diagnose Truson with anything other than the apparent Expressive Language Delay. he seems to be getting worse, however. I hope you will forgive the liberty I take in composing such a lengthy letter. As I have no adults around me during the day, I've a tendency towards verbosity. Ever since our marriage began, my husband and I have known we would homeschool our children. Now that my eldest is 5.5 (and ravishing every morsel of knowledge with which I can supply him, which is unfortunately very little because of the constant attention required by Truson), I a ever eager to teach him. Having been inspired throughout the years by Pearls' No Greater Joy ministry, as well as Charlotte Mason, Maria Montessori, and Dorothy Sayers, I feel like I could burst with all the ideas I have for educating my children. As eager as I am, however, right now the best I could be said to be doing is babysitting, chaos control. The moment Truson is left to himself he becomes chaotic in his 'play' and he needs less then a minute to turn the house into disarray. I hardly know what I write. Please send help. I wish I could pay your $25 dues, but I am currently in no position to do so. I have not access to your website, (I am currently using free email), but if there is anything you can do by way of guidance and/or connecting me with other parents in similar situations, I would be eternally grateful. God bless you and your ministry. P.S. the baby has just been woken (as usual by Truson) but real quick I wanted to inform you a bit more of Truson's nature. He is not entirely without sense. He often will will obey simple commands. Lately after reading a book by Montessori, I accordingly made some adjustments to our home, the most effective being the re-arranging of dishware to low cabinets where easily accessed by the boys, and now Truson will unload the dishes from the dishwasher, as long as I am sitting right beside him and frequently guide/prod him (he loses focus easily). I see the how much he could benefit from my being able to devote myself entirely to him throughout the day, and if I had the money I would probably out my other two children in a well reputed Montessori school for a while just so I could make some progress. Tired and near Despair, Jessica Cowart 770-972-9663 1891 McGee Rd. Snellville, GA 30078
I recently ordered your Straight Talk 1 for my four year old son. I just want to say thank you so much for creating an easy, fun program to use at home. We have tried for over a year now to get help for my sons speech problem. We have seen two therapists, been turned down by the public schools (because his problem was not severe enough) and have been very frustrated by the whole world of therapy. My son is a very bright four year old, he reads well, and has a huge vocabulary, but he struggles with specific speech sounds. I started making note of these sounds in my older child's home school journal. I knew the trouble sounds, I just didn't know what to do with the information I was gathering. I believe your program has been an answer to prayer. My son is showing improvement already and I feel empowered to help him. Thank
you for making speech therapy simple and available for those of us
without any special training. I especially appreciated that the manual
suggests praying over specific issues with our children. I forget that God Bless, Meredith and Brad DeSpain (Engineering Specialist FM Global Dallas Operations) bradley.despain@fmglobal.com (918) 366-0661 Greetings from Amish Country Pennsylvania! Saw the Boyers at the HSLDA conference this fall and thought of our time with you in Spokane. I was browsing your website for your address and wondered if the talk I do on a father's perspective on having a special needs son would be a blessing to your members. It is available free as a download at musf.org. It is entitled Pride and Expectations. Or if you want a hard copy of the CD I can send you one and you can listen to it and if you wish, duplicate it and distribute it as you see fit. Just a thought. I am being asked more and more to give this talk at conferences. Blessings on you and your family, Steve Demme Socialization? There have been studies done about the socialization issue and, yes, our children need socialization.....but NOT peer socialization!! Children need "age integrated" socialization meaning that they need to interact with all ages of people like their parents, grandparents etc. You may as well get used to the socialization question coming up all the time! I've never met an "expert" who doesn't bring it up (believing that they are the first to ever think of this "all important" issue). It amazes me how none of the experts have ever shared a concern for what my children are learning academically. Isn't school supposed to be about learning? Apparently not!! Do you talk with your child? When she talks with you do you respond? That is all the socialization that she needs. I have only met one "non socialized" home schooling family in our 15 years of homeschooling. Yes, this family fit the stereotype of shy (to the point of stammering when talked to) very very introverted etc. Well, guess what! The parents were that way too! The kids were all national merit scholarship finalists (very intellectual) and undoubtedly would have been just as reserved (or more so) had they gone to school! So flush the socialization issue down the toilet which is where it belongs lol! About the only way you can avoid it is to find a large family, homeschooling friendly speech therapist who has truly learned to THINK! From Jill Farris in Idaho (who STILL has people look at her seven chattering happily to each other and is asked, "Aren't you worried about socialization?") I am an elementary music teacher in southern Ohio. I have an autistic child who has become one of the jewels in my life! The first time I met him, he scared me to death... and now I don't consider it a good day until I have spent a little time with him. He is VERY musically inclined. He can sing in tune... and he has great rhythm. My goal in the coming school year is to give him piano lessons... free of charge as a surprise to his parents. He will be in second grade... although he is old enough to be in third grade. He is VERY verbal and reads exceptionally well... all that to ask... what piano curriculum did you use for your son and what would you recommend I begin with? I teach many students piano lessons... but he will take me into uncharted waters... I just wondered if you had any suggestions. Thank You, Mea Wyatt curlyprincess@mics.net Christian Parent, If you’re like me, you’ve been surfing the web, hoping to find a daily devotional for your child on-line. That’s why I was excited to hear about www.yoroom.org It’s just what our family needs. Not only are the devotionals well written and fascinating, there is a full color illustration (see attached) each day and a printable coloring page for our budding artist. During the summer months the devotionals are about true-to-life experiences of missionaries from around the world. Go to www.yoroom.org and see for yourself! John Happy Day! Today we went to court and finalized our adoption of Monica! Thanks again for being instruments of God's will in the adoption of our little sweetheart. We love you and we pray for your ministry every day. What you are doing with these CHASK children is so wonderful and is very close to the heart of God I'm sure. You might want to tell CHASK families about a place that gives grants for adoption expenses to families who don't have a lot of money. They particularly like to give money to families adopting a special needs child. They gave us $2,000 to help us pay our attorney fees for Monica. Their grants are between $2,000 and $4,500 I think. It is not supposed to pay for all of the adoption expenses, but just help out with them. Here is the information: Gift of Adoption Fund 101 East Pier Street, 1st Floor Port Washington, Wisconsin 53074 Phone Toll Free 1-877-905-2367 or 1-262-268-1386 E-mail: info@GiftofAdoption.org Website: www.giftofadoption.org Grace Children's Orphanage in India Greetings in Jesus Christ's name. We are fine by the grace of our Almighty and your prayers., and trust in Lord you all are fine there. By the grace of our Lord and your encouragement and prayers, the Grace Children’s Orphanage work is going on well as we run our ministry by faith. Due to some problems, our regular sponsors had limited their funds, we faced some difficulties in providing needs of the children home. As God led me to do this work, we are running this work by putting faith on the God as He told He will supply our needs. We Are faithful Praying God And Asking Him To Show Us new Sponsors Who Can Extend Their Financial Help. We will never forget your first love towards us and also for your support. We always pray for you and for your ministry and also for your dear family. Presently our website is changed and also our phone number is changed and also mailing address changed, we urge you to modify the information on your website. We Are faithful Praying God And Asking Him To Show Us new Sponsors Who Can Extend Their Financial Help. We never forget your first love towards us and also for your support. We always pray for you and for your ministry and also for your dear family. Presently our website is changed and also our phone number is changed and also mailing address changed, we urge you to modify the information on your website. Our new website is http://www.burl-k.com/ Mailing address; Grace children’s orphanage Door-no 13-7-6. Bethany pet. Bhimavaram-534201 W.G.Dt, A.P, S INDIA phone number is 08816-235070, Medical emergencies &; childhood illnesses : includes your child's personal health journal. I found this book in our local library. I was attracted to it because of Dr. William Sears, a well known pediatrician in California. A friend of mine has him as their pediatrician. He has 8 children, one has Downs. Two of their children have grown up to be partners in his practice. He and his wife have written many books on child raising which I highly recommend. I wish he would write one on raising a child with Downs. This book has what parents of children with special medical needs should have. Not only descriptions of different diseases, but also it is a record book of what illnesses, immunizations, allergies and surgeries your child has been through, along with room to note what the reactions were and complications. It's like the title, a personal health journal for your child. If you get a chance, check it out at your library. If your library doesn't have a
copy, request that they buy it! Medical Emergencies & Childhood Illnesses : Includes Your Child's Personal Health Journal by Shore, Penny A. Parent Kit Corporation, 2002. Call #: 618.9 SHO Subjects Pediatric emergencies Children -- Diseases. Series ParentSmart books, Shore, Penny A. ParentSmart Books. ISBN: 1896833187 : Homeschooling a blind child and needing input... I have been dismayed at the schooling my daughter is able to receive from or local school area. It was brought home to us when Katy came home and told us she was not to say grace at the table. We are not willing to send her to a blind school for the week due to the distance and her other physical limitations. I am wondering what is your curriculum for multi-handicapped blind children. Katy has progressed past most of her sensory disabilities, although she is still experiences of set backs. She has been in school most of her life from early-intervention and additional physically therapies and sensory integration therapies also. She has a super memory and learns well for her rewards. She has had bouts of lost skills whenever she became ill or severely upset. Her diagnoses is a form of septo-optic hyperplasia, PDDNOS, Mar-fans syndrome, failure to thrive, tube fed due to pancreatic abnormalities and inability to digest foods because of a lack of amino acids. She is now willing to eat some table foods. She is to join the 6 grade this year, but is still unable to Braille her alphabet. She is able to count and to repeat her letters. She has overcome most of her lost in space problems and is able to adjust in familiar surroundings. Her preference is not to be with large crowds. Her hearing is super sensitive. She will be 13 in Dec. 2004. She weighs 60 lbs. Any help that you might give me would be greatly appreciated. We live in the state of Pennsylvania. Thank You, CarolJoy Mileti mileti101@yahoo.com I wanted to submit the ADHD of the Christian Kind email lists for consideration as a link on your site: http://www.christianadhd.com http://www.christianadhd.com/lists.html Thank you for your consideration, Michele Haynes Web Manager I am a mother of a special needs child. I am looking for materials that I can use to help teach my son. Have you ever heard of anything that uses video and workbooks or video and computer to teach basic reading and math skills? It can't be high level or fast paced. What I mean by high level is junior or high school. I greatly appreciate any information you have. Thank you! In Christ We have Strength! LaDonna Spencer mommala@airmail.net Thank You! Hi...My name is Rachel and I am from Waterford Ohio. The Lord has given me a vision to start a farm with Therapeutic Horseback Riding and an Educational Petting Zoo. I absolutely love being with children and animals. He has given me that tremendous love and I want to use my talents to serve him. Right now we have been doing a traveling petting zoo to VBS's,ARC Camp, and Schools as we have not been able to raise the finances or get the volunteers we need to open up Candy Cane Christian Therapeutic Ranch. I am looking for good Christian volunteers to help get this farm up and going. We need Carpenters, Grant Writers, Computer skills anything you have to offer. I would love to have children who aren't in a Christian home live here. Right now that is not possible. Please pray that the Lord will send Missionaries..(if we are Christians we are all Missionaries) to get this farm up and running so we can share the Gospel of Christ to his Special People. I also am interested in meeting families in this area and am willing to do respite care or help out in any way I can. God Bless You All you are doing a tremendous work. RaeRaeMae@aol.com Rachel Coutermarsh Candy Cane Christian Therapeutic Ranch 271 Derby Rd Waterford, OHIO 45786 Christian freelance teacher certified in Deafness/Hearing Impairments and Blindness/Vision Impairments wants to help homeschoolers. Hello! I am a Christian freelance teacher certified in Deafness/Hearing Impairments and Blindness/Vision Impairments. I recently was referred to your website by my sister-in-law who has previously homeschooled my three nieces. I am excited at the potential to serve families in Southern NJ/Philadelphia area who have either hearing impaired/visually impaired/deaf blind children. Can you point me in the right direction? In His service! Lynda Goetz lynda_ann@comcast.net (609)923-1351 Lumberton, NJ TESTING RESOURCE - Cognitive Aptitude Assessment Software We invite you to visit our site at http://www.readingsuccesslab.com and introduce you to the Cognitive Aptitude Assessment Software, developed by nationally recognized Psychology Professor Mike Royer, Ph. D. of the Laboratory for the Assessment and Training of Academic Skills, University of Massachusetts Amherst and software developer Jeremy Wise, Ph.D. With 15 years of research behind them, the Drs. have recently introduced a free reading assessment test designed for home use and ideal for families, homeschool families, those with special learning needs and educators. The Reading Success Lab™ FREE Reading Assessment Test is a unique screening test to identify readers with disability. Other free tests typically ask a series of paper and pencil questions regarding a reader's struggles with reading. Our test actually tests reading skills. The software measures both the accuracy of response (did the reader make the correct answer), and the timeliness of the response (how quickly did the reader make the correct answer). Measuring timeliness indicates whether the reader has mastered the skill or struggles with the skill. We believe the application of the software for families has proved to meet many of their concerns about learning problems. The soon to be released full assessment software will provide a full diagnosis with recommendations for intervention, all with ease from home. Test the whole family with software customizable to multiple age levels. With kind regards, Debra Paynter CustomerCare@readingsuccesslab.com Other of our sites we welcome you to check out http://www.educationalhelp.com/companyprofile.html http://www.jamesmroyerphd.com/ http://www.cognitive-aptitude-assessment-software.com/ Senior is considering working with children with special needs. What would you suggest as far as a career? Dear Nathhan, Our daughter, Bethany is a senior and is considering working with children with special needs. She has a great repertoire with them as well as experience having two brothers with DS and working with kids in Special Olympics. What would you suggest as far as a career? (Her biggest desire is to be a wife and mom, but we also know the need to have some kind of a skill to fall back on.) She's thinking about teaching, but the mainstreaming situation is tough. Children in our area are being placed in regular science classes, as well as having to take proficiency tests. She's not great at science, but is better at English and music. She also has a dream of having an orphanage for children with special needs. Any ideas would be appreciated. I know this isn't your typical question, but I know your ministry has given you expertise in this area. Thanks, Linda Rau Does anybody have any insight or experience of this particular problem? A five year old girl (adopted) who was toilet trained o.k. but now smears bowel motions all over walls & floors. It used to be just at home but now it has started happening at other people’s places & even the library. She now has to be under constant supervision (home schooled). Can happen often in a day. They have tried everything they can think of. Normal punishments, making her clean it up, talking about it, a lot of prayer, pinning on braces etc. She is intelligent & has no obvious "diagnosed condition". We know the Lord must have freedom & healing for her. But it is obviously making life very difficult for this precious family that we love so much! (she has a 6 yr old brother, home schooled, & a younger sister, all adopted) Thanks, would love to be able to pass anything on to them from any one who has experienced the same thing. Maree I am a student at Cincinnati Bible College. I am beginning research on a paper for a youth ministry class. I am looking for helpful information on successfully involving ADD/ADHD students in your youth ministry. I have not been able to find anything out there. I think this has to be an area youth leaders/ minister need to understand. Thanks, Terry tnlight@juno.com Down Syndrome Doll types ... Just attended a NIFLA conference and found some great dolls that are Down Syndrome types. Called "Downi Creations" and are wonderful. Person is Donna Moore and her number is 888-749-9330 or the website to view the dolls is http://www.downicreations.com/ . Really cool!! God bless!! Byron I saw several letters in your latest edition of the newsletter with questions and concerns about Down Syndrome. Perhaps our experience will help answer some of them. Arthur was born with Down Syndrome nine years ago. He was healthy at birth (no heart problems, etc.) and I was able to nurse him for more than two years. He's never had any eating problems, and eats rather neatly. We have worked with him a LOT, in ways similar to the NACD. We began giving him Nutrivene D and piracetam when he was six months old. His muscle tone improved noticeably and he was able to learn to walk at 18 mos. Our trampoline has been great for his strength and balance. We discovered he needed glasses when he was three. The older he got the more the supplements cost so a year ago we started using a powdered vitamin available at the health food store along with flax oil. He had fewer colds this winter than before. We keep a humidifier going constantly during the months when the furnace is running which is also a big factor in avoiding respiratory illness. He speaks very unclearly, mostly in two word sentences and just got potty trained a few months ago, so in many ways he is at the developmental age of close to three. He holds his pencil correctly and draws people figures extensively, with lots of detail. He's learned to make a few letters and can match colors and shapes well but doesn't say their names well at all. We've coached him to answer "Arthur" when people ask his name and to say "nine" when they ask how old he is, but he always answers some unintelligible words of his own when asked in public. He is a great joy, is the best lover and greeter in the family, has a wonderful sense of humor, loves to dance and sing to music, is a fine mimic, praises the Lord with gusto, prays tenderly in mostly unrecognizable words. He is sensitive in many ways and seems very intelligent to me but his lack of communication skills would cause him to test very low and be considered very delayed, more than the "average" person with Down Syndrome, is there is such a thing. We home schooled him exclusively until this year when he has enjoyed school four hours a day two days a week. All of his siblings are much older so they are mostly gone from home. The interaction with other children has been good for him since he doesn't go to any children's programs in our church and was growing a little anti-social, probably as a result of his poor communication skills. He is as tall as most children his age so they don't understand why he can't talk more. He loves doing things with his dad. Swimming is a passion with him. I hope this helps. When Arthur was born, I wanted to know what to expect too and read voraciously everything I could find about Down Syndrome and child development. His severe delays in communication (and potty training!) were frustrating for a while, but we all accept him as he is now and trust God for the future. His siblings all treasure him. Chris Miller cmlmiller@hotmail.com Mom needs help with 33 year old son with spina bifida. My son is 33 with spina bifida. He does not want to live. I am not good with the computer. He does not want to do any thing at all. I spoiled him. I did everything for him. Now he has no interest in anything. His wheel chair is heavy. I can't carry it in the car. I cant seem to get a lightweight one. He enjoys going fishing, but has nobody to go with. I can't give him my car. I can't get him fishing poles or a car. He is scared to get a job. I don't know what his problem is. I can't help him any more. I am on disability myself. I need back surgery. I have nobody to help with him. I just wish there is somebody to help him help himself. I can't do it. He doesn't listen to me. I keep telling him to get a job. He doesn't have experience in anything, but I told go to Walmart. They will hire him, but he doesn't really have transportation. My car is old. If something happens to it, we have no way of getting another one. We are both living on social security. I am very depressed myself. I don't know how and where to get help. I am renting and all of our money goes to bills. We have nothing left for anything extra like clothes or to do anything even to look for a job. If there is someone out there to help me get him a job, or a wheelchair that is easy to carry I would be grateful. My name is Margaret Shanklin 3708 Canal Road Lake Worth FL 33461 l 561 4390999 I will take any advise. Thank you who ever is listening. .... I still battle with the Sunday School question. I am always encouraged my NATHHAN News, but lately, when discouraged, it takes me longer to pull out of it. I feel the same motivation and purposefulness I had when we first adopted our 6 special needs children many years ago. The children are now 12,13,13,14,14 & 16. Their disabilities range from full traumatic brain injury with resulting blindness, severe mental retardation, to Fetal Alcohol Syndrome with 145 IQ and no common sense! 3 of them have Aspergers/Autism Syndrome....we also have 3 tremendous birth children ages 23,21 and 18. The birth children are still at home and have lovingly shared Mom and Dad for many years.
These children used to be our "identity" or "family project" I don't say this in
a "cold" way but to show that we were in this together, wanting these children
to have a life so different from what it seemed they were destined to have. As
the children have gotten older and their capabilities have not increased in a
commensurate way with their their physical growth this gets harder and harder to
work with. We are a conservative Mennonite family with a very loving
church....but I still battle with the Sunday School question of when to promote?
Which "group" can they sit with? Which activities do we let them go to? We truly want to continue to be a family that 'in honor prefers one another" but are tired (not so much physically but emotionally). Will we forever have to "explain" their behavior to others, their "strange" conversations? And what about when they themselves don't see themselves as any different from others and wondering why they can't go to age related activities? You become the "mean" parent and it gets tiring of explaining to others "why" you make this decision or that decision.....We appear so much tougher on our children....Can you sense my frustration? At one time and for many years our sense of "mission" and purpose and intense love for these dear ones outweighed all the frustrations....as time has gone on all the extra emotional energy expended is hard to recover from.....Can anyone give advice? Thank you! Donna Kooistra kooistra11@juno.com I have recently been made aware of an "FM system" that could help my son hear teaching better. My five year old son is severely hard of hearing and wears hearing aids on both ears. He is doing well in speech therapy (I go and sit in on these sessions so I can work more effectively at home.) We plan to begin homeschooling him this fall, and as I'm sure you can imagine this is NOT the desired action of his pathologist or audiologist. I would wear a microphone and he would wear a transmitter that is attached to his hearing aids. This would enable him to pick me up more directly. (His hearing aids make everything louder - running water, footsteps, etc. These sounds are heard much easier than the human voice.) His audiologist and pathologist both feel strongly that he is at a critical age for hearing words said properly. (Speech, reading, etc.) I am wondering if you know of grants I could apply for to purchase this system. talk2us@apostolicHOMEnetwork.com To a family needing input reattachment difficulties: Response #1 It is with a joy and confidence that I share with you how the Lord has done a wondrous work in the area of attachment with my daughter. Born in China, and living in a crib with one other baby, I was blessed to get her when she was about a year and a half. Her reaction to being touched or held was not good. She resisted. In fact, the only time she was content being held was when I was walking. This sounds easy enough, but she was not little and carrying her and moving around the house for any length of time got wearisome. I did use a sling, which helped. And, I did carry her around as much as I was physically able. When the movement stopped, she wanted away from me. Not a normal, "I want down," but an obvious resistance to my touch. The months wore on, and there was never a time I could sit and hold her. She would sit next to me and look at books. That was it. Finally, knowing I would be adopting again, I began to come to grips with the true seriousness of this problem. With a new little one needing attention, would her problem ever be resolved?! A pastor-friend suggested that I "push" the issue. By this time she was a few months over two years of age. He related that just because she was not responding in a positive way, that I was not to give up. The whole of the advice had us shopping for a glider rocker that fit the two of us (her on my lap). We went all over town, sitting in rockers together until we found one. This rocker became what is still known as "the cuddle chair." I began holding her in the cuddle chair for one hour a day. Lest you think this was in one stretch, be assured that ten minutes of holding her was hard on both of us. I rocked, sang, and she wanted down. I prayed. And prayed. I rocked and held on, as I sang. Each day I clocked one hour, always in short segments. In time the length of the rocking-holding segments increased. One day she actually relaxed enough that she fell asleep. Eventually, she gave into the holding. And, in time she began to really enjoy it. It took many months. In the meantime, at age four she wanted to get saved. She is a bright girl and understood what Jesus had done for us. I hesitated, putting her off until I could be sure she really understood the commitment. Finally, one day the Lord spoke to my heart and said that she would need to be saved to overcome the problems she was having. So I waited until she asked again... and I waited... and I waited. Finally, she did, and with a sincere heart she asked Jesus to forgive her sins and to come into her heart. Today she is seven and a half years old. She is attached to me, of which I have no doubt. The scarring of her unattended time in the orphanage is slowly fading. She is a delightful girl, and takes her Christianity very seriously. Just yesterday she came to me and said, "Mumma, you never hold me anymore." So, she snuggled up into my lap in the cuddle chair and I held her and we just rocked. My advice: Seek the Lord. He gave you the child; He knows your child; He will heal your child. For me, asking someone I trusted spiritually, helped me define the problem. His advice was so basic. It was not profound, but the results have been. Our God is a faithful God, and oh how He loves the little children! The joyful mother of two little girls (one from China and one from Viet Nam) - Brenda. hosannahouse@yahoo.com Response #2 Attachment Disorder - Our personal experience As an adoptive and foster mom with typical and not-so-typical kids, as well as a Christian homeschooler, I’ve enjoyed reading and gleaning wisdom from your publications many times. I find that now I am able to pass on some of that wisdom as the grandmother of a newly adopted Indian granddaughter as my own daughter struggles with attachment concerns. What a difficult time to welcome home a much-awaited precious child only to face the difficulties of rejection and feelings of failure that these hurt children bring out in a loving mom. I appreciate the practical, Christian perspective that God has given you regarding these challenges. What has struck me in my study and personal experience with children who have attachment problems is the parallel that emerges between attachment in children and our attachment to our heavenly Father. The simple act of asking for something is an example. I had a foster son who would smell baking and come into the kitchen asking, “Are you making something? What is it? Are those cookies? Those look good.” He would strongly resist the question, “Can I please have one?” Asking for something or asking for a favor insinuates a dependence, humility, a reliance on the favor of a parent. How interesting that we are urged in scripture to ask. Of course God knows what we want, but in our asking, we acknowledge our dependence on Him. How wise of Him to expect us to ask. I recently participated in an attachment evaluation between myself and a two-year-old girl. In the psychologist’s report he placed great emphasis on her eye contact and our smiles back and forth. He gauged her attachment on the number of times she wondered the room, coming back to show me a toy, glancing up to make sure I was there and ignoring the psychologist. What an example of our healthy relationship with the Lord: to be constantly in prayer, looking up to get His feedback and approval, tuning out others around us, not fearful and clingy, not aloof and detached, but always aware of His importance and accessibility in every detail of our lives. Of course the opposite is true. Just as a child who is not firmly attached, the lack of trust in our relationship to God brings out the worst in us. Defiance, disobedience, control and manipulation must break God’s heart. Those of us who have parented such a child can relate. “Why can’t you trust me?” we ask. “ Don’t you know that I am committed to your good, that I’ll not leave you or forsake you, that you can trust me?” There are those of us who are clingy and whiny in our attitude toward our Father. Not really trusting Him, we resort to fearful pleading and worrying when all He wants is to give us peace and help us relax in Him, “molding” ourselves to His will the way a child relaxes into daddy’s arms in a rocking chair. Then there are those Christians who are still “flirting” with the world, still becoming engaged with the ungodliness of strangers while rejecting the Perfect Parent who will satisfy their need to belong. I have confidence that my daughter and her daughter will come through this season of adjustment and develop a strong bond that will carry this little sweetie to healing and peace, as she grows and develops her own relationship with her parents and ultimately with her heavenly Father. I pray that He helps all of us to have a secure attachment to Him. Thank you again for your teaching and ministry to those of us who care for these little ones. Sincerely, Carol Gloetzner RGloetz77@aol.com ....I attended a Joni and Friends Family Retreat last summer. I am a mom, 56 years old who suffered a t-12 injury which left me paraplegic. Joni and Friends holds multiple camps around the nation during the summer with the purpose of ministering to families affected by disability be it physical or mental. We found the retreat a breath of fresh air, encouraging and totally restful to me and my family. Each disabled person is given a caregiver for the day hours for the week and the family can participate in other activities without the responsibility of the disabled person. I would highly recommend this camp to you and your subscribers. Info can be obtained at www.joniandfriends.org and it would bless the folks who attend. Thanks, Doreen Blair We're having problems with our youngest son, Jonathan (9), with DS. Over the last month he has refused to do things, saying, "Scared, can't, die." It all started when he got scared at a Good Friday service our church had for children. His Dad was there helping and ended up spending a lot of time sitting with him as he didn't want to participate. Since then he won't go into our church's sanctuary where the program took place. Last Wed. night we had to carry him in as he fought us since he didn't want to go to the Sunday School area. Once he got there he had fun and participated. We can somewhat understand why he doesn't want to go to church, but his "Can't, No" attitude has transferred to other areas, too. He refused to put a belt on last night at Special Olympics swimming and didn't get to go in and swim. Tonight he fought getting his coat on to get ready to go for a walk at a park. He was terrible. Time-out and spanking made no impact on him. I walked behind him to our car and put him in. He had fun at the park, but wouldn't come when called to go and ended up not getting ice cream on our stop home as punishment. Jonathan's at 2-3 years developmentally, yet is harder to discipline since he is getting bigger. Any suggestions you could give as to what has worked for you or others will be appreciated. On a lighter note, I really enjoyed your article on diet in your latest newsletter. We just sent in questionnaires on our two sons with DS, Jacob and Jonathan, to Chem Balance. We'll see what kind of a diet program they come up with for them. I'm reading Sugar Blues by William Dufty and it's opening my eyes to the effects sugar has on us and is really interesting. Linda Rau mrau@centurytel.net I have a son with fragile x syndrome who is taking art in a public school. I had a confrontation with his art teacher that showed me she is inexperienced in dealing with special needs children. I would like some information on doing a program at home with Andrew. I also would love info on other families with fragile x children in the NATHHAN program. I am in need of support. Thank you for your help. Please respond to cha29651@yahoo.com. My name is Charlotte Shue. God Bless! My son who is 2 1/2, is not talking, but he does try to, it seems. He just does not seem to know how to actually talk? I have taken him to the doctors who says he may be autistic. We have had a terrible time finding a doctor who knows anything about autism or deals with children so young. The only help we can get is from the state and we do not want to do that. A friend who also homeschools her children suggested your website and said you have a speech therapy program. I looked at it but am not sure it is designed for a child who does not speak at all. He will say "Byeeeee" but that is it. He does fit the description for autism but very mildly and has done much better since I have been working with him but I don't know what to do with the language barrier. It is frustrating to both him and me and I am getting weary with schooling 5 other children and having to chase after him and not having any communication. I have seriously considered either the state intervention or putting my other children in school! <frown> I am sure you can understand this stress. So my question is will this program work with someone so young and does not talk at all? What could be wrong with a child who can't seem to understand HOW to speak? He does not seem to have a hearing problem though he has not been checked. He seems to have a severe attention problem though. Any other recommendations or information you would have for homeschooling LD children or how to homeschool the others while you help another more needy child would surely be helpful. I am very desperate! <smiling> fillauxfarms@juno.com Institute for Human Achievement for the brain-injured children in Philadelphia... I have a 5 year old son who's been in central NJ preschool handicap program for the past 2 years. I am pulling him out of the school and start homeschooling for him after June. He is getting once a week PT and OT and once a week of the Group PT, OT. For the severity of his disability, this is hardly any help at all. I tried with the private PT and speech. They provide once a week therapy 1/2 hour each visit and they do not care as much as the school therapists. At the cost of high co-pay and limited amount of visit, and most of all... no result of anything, we quite private therapies all together. I went to the Institute for Human Achievement for the brain-injured children in Philadelphia and will be working with him at home instead. Their web site www.iahp.org if you are interested. Please share any comments you received from some of the parents. Thanks Jaimee Doctrinal student at Boston wishes to hear from families’ homeschooling with ADHD and social phobias. I became interested in homeschooling after I kept hearing about so many children who achieved success through homeschooling. For instance, my mother-in-law has a friend who homeschooled their son, who is a concert pianist. Additionally, my son went to college with quite a few friends who were homeschooled. My interest was especially peaked by speaking in length to Kate Tsubata, a reporter from the Washington Times and a homeschooling parent, who reviewed the book Home Schooling: The Right Choice by Christopher Klicka, which is the book that I wrote a review for my comprehensive examinations. I am so amazed and so curious about the excitement and verve that characterize homeschooling parents. I have no actual experience with homeschooling, except for my discussions with many people, like Kate, who are homeschooling their children, or my discussions with Mitchell Stevens, who researched homeschooling and wrote the book Kingdom of Children: Culture and Controversy in the Homeschooling Movement, as well as my own reading and research. My own personal philosophical/religious worldview does not enter into my research. It is clear, through my research, that homeschooling has become very diverse, in terms of religion and race, so I hope to research and reflect that in my dissertation. My basic philosophy of education reflects and draws upon my background in special education. I believe in individualized instruction, and working from the child's strengths towards remediating and/or compensating for their weaknesses. I also believe in an inclusive model of education. The reason that I am so interested in if parents teach social skills to their children who have ADHD-I and comorbid SP, is because these children generally live on the periphery of social interactions, which is a very insular and sad way to live. I know, because I have a son who has ADHD-I and social phobia, with both of those disorders directing his life in many unfortunate and complex ways. He is almost 21, and I always wonder if he would have had better self-esteem and self-confidence if he was homeschooled. Since homeschooled children are schooled at home, I am interested in if their parents teach them certain social skills (based on Gresham) or if not, what socially related skills do the parents teach? Esta M. Rapoport 61 Cowdin Circle Chappaqua, New York 10514 Phone-914-241-3147 Cell Phone-914-629-4225 E-mail= Erapoport1@aol.com Answers to a letter in the Spring/Summer NATHHAN NEWS Letter is as follows: 2 boys with autism --- I am totally frustrated and can’t help wondering if I am making the right choice in home schooling my two boys with autism disorders. I just started in January, but some days/most days I don’t feel like much was accomplished and I find myself frustrated. There seems to be no routine taking place yet. They are not having the major melt-downs that were taking place at or because of school. This is great, but I don’t feel like this is the answer either. They both have problems sleeping, so mornings don’t get started very early. Trying to transition into anything almost seems impossible some days. I know there are sensory issues, but when I try to address those issues, it is almost worse trying to get them to move on. Anybody else run into anything like this? If so, how do you handle it? I’ve gone from being really excited about this path, to feeling completely lost.
Response #1: I've been homeschooling my five children for 17 years now, including my daughter who is now 15 and is ADHD, inattentive type. Homeschooling (and each homeschool year) always starts off with great excitement, plans, resolutions and goals--and when things slow down later, we tend to feel as tho we're not accomplishing much, and that in turn leads to frustration and doubt. No one can meet the unique educational and emotional needs of your boys as well as you can. Try to relax, and forget about starting early. Fortunately, homeschooling is almost 'round the clock in the sense that we can slip so much learning into daily living. Good luck! Peg Smiggles64@aol.com
Response #2: I am a mom who has always homeschooled her six children. My fifth child, an 11yo dd, is autistic. I KNOW how discouraging it can be, and perhaps my situation is better than many, but I believe yours will get better in time. The first thing that comes to mind is that often children with disabilities do not wish to grow out of them, stretch, become more than they are, etc. This can especially be true with autistic children. They can be quite content to live in their individual worlds, not emotionally or spiritually maturing, let alone academically. I used to say that every bit of development in Eden (my dd) had to be pulled out of her like a bad tooth, me holding her still while she attempted to kick and scream. Eventually, this got better, and I actually (PTL PTL PTL PTL!!!!) see her making attempts to grow and learn on her own now. But for years this was not so. It required absolute diligence on my part, little interest on hers, and the additionally discouraging thing was that if I gave myself a week off out of exhaustion, she would regress. It didn't give me the hoped-for break after all, because now I had to double-time for a bit. All of this is not meant to dishearten you but to reassure you that if things are not coalescing into a routine, this is normal. The routine will have to be artificially created and maintained by you. Figure out what you can live with, what you can actually commit to on a continuing basis, and be prepared for any change to take months to see. I promise you that you are not alone, that many of us have walked this road and seen the beauty and benefit much later. I would also suggest that you do things in little bits and pieces. Keeping autistic children's attention is difficult (what an understatement LOL), so I never tried to keep us "at school" for hours at a time. I'd aim for 30 minutes of something, give us all a break, and get back to it in an hour or so for another 30 minutes. I would be happy to give some suggestions of things that helped Eden, both sensorally and scholastically, if you are interested. I have no idea what ages your boys are (I'm assuming they are twins?), or what they know already, so I don't know what level you are working with. I found that many things that you do with "normal" children are bewildering and pointless for autistic children, and many resources you would deliberately avoid using for "normal" children are just the ticket for our special ones. If you think there is anything I could help you with, please write back and ask specific questions. I'd be glad to be any sort of resource that I could. What often works is talking with many people. No one person will have all the answers for your particular family, but you may pick up one thing here, another thing there, and so forth. Others have probably mentioned these internet lists to you, but in case they haven't, I will. I am not at present a member of either, my time constraints and family needs not making it practical for me to follow busy lists, but PREACCH@yahoogroups.com and AUT2BHOME are both resources. Both are full of parents of autistic children asking questions and sharing ideas. PREACCH is a Christian list; the other is not. However, that other one often has more information specifically related to homeschooling rather than diet, sensory integration, etc. Both may be helpful. I have the AUT2BHOME info somewhere; let me know if you'd like it and I'll hunt it down. Please know that you are not alone, that this enterprise is worth it, that the answers are out there. Praying for you now-- Robin Smith hear_oh_israel@yahoo.com
Response #3: I home taught five of our seven children (six of them had learning problems) and I have been home schooling our 12-yr. old grandson with severe autism. Our schools were totally unprepared to help him 8 years ago and our other daughter has a five yr. old autistic also and is beginning to hit walls with the school -- not to mention the amount of illness he brings home (last week was ring worm!). Be patient with yourself and them. With autism the gains are measured in tiny steps sometimes not seen for months or even years. I have been trying to teach Matthew letters and numbers since he was two and he still makes no connection with them since they are so abstract to him, but he loves to draw and is getting better every month. Your advances will be so gradual over time that you may not actually see them except in sudden moments way down the path. Don't get hung up on methodology and "the way" to get something across. Just keep trying and praying for direction. Home is the least restrictive environment for them. Sleeping was a HUGE problem for years. I was so sleep deprived I thought I would die! He woke up between six and twenty times a night -- after going to sleep past midnight, wandered around the house and often went outside (until we installed key locks on the doors inside) from a year old until he was just past ten. We use melatonin, "Calms Forte", and a magnetic bed pad made by Nikkan which really turned things around. He sleeps through the night most of the time. The magnetic pad really made the final difference. And when he began to sleep better I was able to deal with his needs better and see everything in a calmer light. Sensory issues have been a problem for years -- just do your best and gently keep redirecting them to something less stimulating. Hope this helps, good luck and God Bless. Irene Mitchell Letter from mom whose 7 year old child has PDD/ Stimulation issues like arm
flapping, "daydreaming". My son is 7. He has never been tested, but my guess is that he is PDD. He is one of 5 children (the middle). He has of late developed more of a desire to play with children other than his siblings, but he is not an easy fellow to play with. He is very controlling. He’ll tell children what the toys should do and isn’t open to playing other than what he himself wants to play. We are working on this in playing with his siblings. I feel badly because I think that he is soon to realize that he is viewed as odd or different by people outside the family. How do some of you deal with this? When he likes something, he visualizes it in his mind and will pace up and down flapping his hands. For example he will replay in his mind the chariot scene form Ben Hur. When he gets to a tense part he flaps even harder. He can be dissuaded from this activity. We call it day dreaming. When I see him start I say “Nathanael, act out with your toys. No day dreaming.” He is relatively compliant, but if he is really into it he’ll say “Mommy can you stop looking at me. Go to the other room, the baby’s crying”. That’s his way of saying “Leave me alone.” What are some theories or ideas about the hand flapping? Does anybody else’s child do this??? Can they or do they outgrow it? Would this be a sensory integration issue? The day dreaming decreases by over 70% when he doesn’t watch TV, especially animation. He really is the most frighteningly visual person I have ever known. He has taught himself to read and with excellent comprehension. Response #1: My husband and I are parents to 2 boys. Our oldest is almost 9 and exhibits many of the behaviors you described in your letter. In addition to having multiple other neurological issues, he also has Sensory Integration Dysfunction, which ( in him ) manifests with arm and hand flapping, elaborate storytelling/imagining ( similar to your son's "daydreaming" ) and play control issues. It ( the S.I.D. ) also affects his ability to focus on tasks that are not self-initiated, impulse control, and speech volume and "blurting out". I won't go into more detail now, but I want to encourage you to learn all you can about sensory integration issues. If you can, I would recommend finding an Occupational Therapist that has training in S.I.D. to at least counsel you on strategies that might be helpful for you and your son. Our son was blessed by having one such O.T. early on in his life to teach us and him ways to deal with his behaviors. He is reaching the stage that he is aware of particular stresses and stimuli that impact his behavior and is becoming more responsible for managing them himself. One very important note, you have already made the connection between TV and behavior. Your instinct about that is right - it affects people who are "wired" differently to a far greater degree than "typical" people ( although it affects everyone ). There are also other stimuli that come into play - a visually cluttered space makes it difficult to concentrate, acoustics in a room play an important role, temperature, etc. etc. I hope my letter is of some help. I would certainly be willing to go into further detail if you would like some more ideas. My prayers are with you and your family as you seek to find answers to your questions about these issues. alcparker@yahoo.com Response #2: You mentioned you feel badly as your son may soon realize he is different, and wonder how others deal with this. This involves 2 areas--your own feelings and those of what your son may eventually feel. I remember feeling when our son, now 18, was about your son's age, grief over the things that would never happen. One example is when he knocked on the door of a neighborhood girl and realizing that he may never be able to date for example, or the grief at each birthday that there were no kids that would come, and my noticing the delays compared to peers. I don't know that one ever recovers totally from the narcissistic blow of birthing a special needs child, but it does get better over the years, at least in our case. Perhaps this is because we have seen substantial progress with home education and therapies throughout the years, and perhaps it is because we have done, and are still doing everything in our power to create change, and there have been some great results. The other area, your son's feelings when he realizes he is special, is what you will be able to handle better after working through your own disappointments. When he brings things up, you can discuss them. And you can find ways to notice when symptoms drop, and let him know you are aware of his improvements. I try to do this without false praise, but just as observations and my son loves it. Our David used to hand flap, and I remember wondering if it would ever go away. It has, and I can't remember how exactly. I used to make him aware of it, and try to redirect his actions into something more socially acceptable that he could do with his hands for instance, perhaps ball throwing or playing the piano; things that would use his hands more appropriately without his thinking of the hand flapping he was not doing. I thought your son's response to your interventions shows quite a bit of social awareness and resourcefulness in his attempts to uninvolve you in it by redirecting you. ("Mommy stop looking at me. Go to the other room. The baby is crying.") That made me feel he has lots of potential for change. I assume you are discussing with him your awareness that he wants to be left alone, and showing him other things he can do with his hands that may not even involve his conscious awareness. It may be tough to hand flap while playing with clay for instance. I don't remember reading anything about how to make hand flapping go away, and I remember feeling doomed that it would last forever, and it amazes me looking back over the years how many, and more probably all his autistic symptoms have disappeared. Other things that helped immensely were diet interventions, therapies including neurobio feedback, swimming, music. As for TV, it used to make David violent to even watch Mr. Rogers or to be on the computer for educational but brief periods. I think it must have done something to David neurologically. The surgeon general of the US has warned parents of all children to keep them away from TV for at least the first 2 years of life. It must have some harmful side effects for the general population. We used TV when David was about 2 to try to interest him in the world outside of self stimulating his own body, and found that he became interested when we put on sign language videos from the library. Then when he started to react with violence after even brief exposure, we totally removed TV. Now he can watch occasionally, usually a movie, but he isn't that interested as he has so many other interesting things to do with his life, primarily for him in the field of music. Music therapy, then on to music teachers is what has helped David the most. Home education was a life saver for him. He could then explore topics of interest on his own. The autistic nature of how he would focus on one topic to the exclusion of others used to concern me, but over the years it has provided a depth to his education even though at the time it seemed he would only be interested in one thing forever. Now that I look back on it, the topics changed periodically although a few have remained over the years. It sounds as though your son has a lot of academic strengths, and it is wonderful that you are home educating him. It is also his strength that he is able to play with his siblings, even though it is different from the norm. Testing for the autistic kid is probably not that accurate in many cases. My daughter is starting her pre-requisites for a master's degree, and was discussing with me yesterday how in her class work this very topic was addressed, the inaccuracy of testing for autistics. It seems was most inaccurate in the case of our son. Many of the diagnoses are catch alls, and change over time as the World Health Organization revises the manuals at least every 5 to 10 years. Also your son's symptoms may change over time. My phone number is 610-272-2164 if you ever want to call, and my email is
mary.himmer@juno.com
Best wishes with all you are doing for your son. I used to think that nothing
really worked, but in hindsight, Response #3: Hi, I am trying to respond to the mother who wrote a letter in the Spring/Summer 2004 edition of Nathhan News. The title of her letter was "Arm flapping, "daydreaming" how do you work with these issues?" The boy is 7 years old. I don't know if she's heard of Fragile X Syndrome, but if her son had this diagnosis he would sound extremely mild. What caught my attention is the autistic behaviors, especially the arm flapping. My son will be 13 May 30th and has FraX. He hand flapped for years and still does on occasion. His obsession is spinning a pom-pom right now. It is a visual thing for him. Trey is mentally retarded in the moderate to severe range. He is a great kid. I received his diagnosis when he was 5. Fragile X is the leading genetic cause of mental retardation. 1 in 250 women around the world (any race or nationality) are carriers and have the potential for passing on the Fragile X gene to their children. 1 in 700 or so men are carriers and can pass the gene to ONLY daughters in carrier form. It sounds complicated, but the sheer number of "carrier" women is astounding and the possibility of having an affected child is over 50 percent if you are a carrier as I am. I have one affected son and one unaffected, non-carrier daughter. Please go online and read the symptoms of Fragile X at www.FragileX.org . It is a wealth of information and may help. Fragile X is detected by a blood sample sent off and received back in about 3 weeks for over 99 percent accuracy rate. The pediatrician or a private lab can order the test and send the blood off to 1 of several labs set up to process it. I am the contact for the state of Louisiana for the above web site through the National Fragile X Foundation, Sincerely, Kimberly Soileau Clinton, LA. email: nks@integrityonline27.com or nks@iol27.com |
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