Mom of 7year old with PDD   

 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 from 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

    Dear Parent-

    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.

RESPONSE #2

    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 un-involve 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 neurobiofeedback, 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 it 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.

    Best wishes with all you are doing for your son. I used to think that nothing really worked, but in hindsight, we have made tremendous strides. I wish you a miracle.

Warmly, Mary in PA    mary.himmer@juno.com 

RESPONSE #3

    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 Fragile X. 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 http://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 email: nks@integrityonline27.com or nks@iol27.com

RESPONSE #4

    I'm so excited to find this forum!! How comforting to find others who have to find ways to cope and overcome the same obstacles that my family has.

We have a son with dysfunction of sensory integration as well. As I'm sure you know, SI issues cover a lot of ground! Our son is hypersensitive to touch, so his issues are a bit different than your son's. We received tons of wonderful information by going for just ONE visit to an occupational therapist. This cost us a bit, but it was worth it. We may need to go back again sometime in the future, but the OT gave us enough to keep us going for awhile. I was so encouraged by the help she gave us, and how she believed that we were capable of doing these things with our son. She trusted what we said, she treated us as peers, not lesser mortals. Quite refreshing. She worked very well with our son, too. Some professionals are so uptight while working with him that I feel it's a waste of time to have seen them. (Uptight professionals, in my opinion, should not work with children who don't learn or respond in conventional ways. Sorry! That is totally off subject!)

    Do you already work with an occupational therapist? If not, I highly recommend doing so. You would need to find someone who is familiar with sensory integration issues and who often (or exclusively) works with children. We live in Oregon and if you live near here I can share with you the name of the OT that we visited.

    The OT also suggested that we use a weighted blanket. She told me how to make it and suggested using lentils because of their shape and nice weight, and their cheap price vs. other weighted materials or *gulp* buying the expensive vests/blankets through therapy supply places. I found that instead of lentils you can use the stuffing that they use for "Beanie Baby" types of stuffed animals. At Wal-Mart it is $3 or so for a 1 lb bag. (I'm pretty sure it was one pound) The benefit here is that the blanket or vest can now be washed! Yeah!

    Our OT suggested that instead of buying a specially made vest we go to the Salvation Army or a second hand store and find a vest that our son likes, then add pockets for weights, (BB bean bags, or bean bags of any weighted material). The OT said that kids may feel isolated, "stupid" or upset by wearing therapeutic vests - especially with the weighted vests sold for that purpose since they look kind of...I think her word for it was "geeky". They can still get the benefits while wearing something they actually like, so she suggested that route.

Here's the directions for a blanket:

1 Buy one yard of polar fleece and fold it in half

2 Sew two sides, leaving one side open

3 Sew channels so there are "tubes" with the open side forming the mouths of the tubes

4 Pour one quarter to one half cup of weighed stuffing into each "tube", then sew across the channels, forming squares

5 Repeat until the blanket is all "squared" and thus has little weighted pockets all over.

 Hope this is of some help.