Anyone familiar with Sensory or Asperger's?

[ruthie5573]

Hi, I have 3 children and my DH and I are at a loss how to handle our 3 year old son. He is very bright and affectionate, but he is very socially and emotionally immature. We suspect sensory issues and in reading about Asperger's, we feel like there is something going on along those lines. We have gone through Early Intervention to see if he qualified for OT and he did not show enough developmental delays to qualify. Since then we are working on getting a referral to an OT who specializes in Sensory Integration Dysfunction. I guess I just don't know what else to do...can he be diagnosed with anything at this young age? If so, who would we see? I don't even know where we'd go besides OT. I guess a psychologist scares me. He is a precious child, but very challenging...he can't calm down when he gets upset, he's very obsessive, can't transition well, and is overly aggressive...I feel like I spend my whole day walking on eggshells and trying to figure out what he wants because he does not tell me what's wrong when he gets upset...he just freaks out and it turns into a long meltdown that ends with him usually throwing up because he gets so upset. It's very frustrating and we want to know where we go from here to figure out what's going on with him!? Thank you!

[Laurie4b]

An occupational therapist is a very good first stop. For one thing, no matter what he's diagnosed, OT is typically one of the main providers of *treatment*. Sensory integration issues underlie many other diagnoses, such as Asperger's, ADHD, etc. If you treat the sensory integration stuff, it takes a huge "chunk" out of the problem. At age 3, his neurological system is still very plastic and the effects of OT can be permanent.

In addition to OT, I'd suggest a developmental pediatrician.

[kRenee]

Definitely get to an OT - one who knows how to treat SPD. And good for you for seeking help early. Get the OT started and then you can seek an official diagnosis.

[purplecow7]

When my just turned 4 year old started hitting and having real difficult time in pre-school. I started to do a ton of research on Sensory Processing Disorder. The issue is my son is very smart and very very out going - a real charmer. This hid his issues. I read the book the Out of Sync Child. This is a great book and a great place to start. I then read a whole bunch of books on SPI and web sites. I found an OT and had him tested and I went to a few OT sessions and we created a sensory diet. I got most of my ideas from the Out of Sync child at play. Each child is so different so what works for one will not work for all. But the book explains the different sense and what you can do to help the child learn to adjust.

What I do now is keep track of what I do with him and what works and what doesn't. It is all trial and error. What I have found is my son needs what is called heavy work. We started with push-ups and pushing tables and carrying a 3lb ball up and down stairs. What I have found is he cheats and uses more of his legs then his upper body so what really works is I tide a jump rope around my banaster and he sits in a box and pulls himself toward the banaster. He also pulls his twin sister around and sometimes his older brother and sister pull him. Or they play tug a war. He also jumps on the trampoline, takes soccer (we have seen a huge improvement he now kicks the ball in the group) He also does tae kwon do - he is on the slow path as he has trouble following the patterns - part of his SPD. But from the OT testing we learned that his core body strength is very weak. Thus when some one pushes him - normal classroom stuff he feels like he is falling down stairs. Or if someone touches him he feels like they are hitting him. If I can keep him "full" with sensory information then the normal touching in line does not feel like hitting. The Tae Kown Do really helps with building core strength. OT also recommend yoga for children. Building his core will make him feel stronger and not so influenced by the small touches.

I also learned that the heavy work at night does not work, it keeps him up. So instead I roll him in a blanket and give him the heavy pressure by hugging him. We also play hot dog and I put him inbetween two bean bags and squish him. This helps calm him and helps in sleep. I also found that ball pits are too much for him. If you really start to watch your child you will see that they are all ready doing things that work for them. Like my son used to hold himself up on the table or he would get between the bean bags hims or he would get inbetween the wall and our couch and pushes his legs agains the wall and his back to the couch. Or he would jump up and down on the sofa and fall down a lot - he was seeking stimulus to help make him feel "full".

It takes time to figure out what works and what doesn't and then like any child once you figure it out they grow and change and you have to start again. But with that said, we have found that doing the heavy work in the morning and he will now ask for a break or if a teacher sees him start to spin up - they will take him out of the classroom and have him push chairs around or carry paper around - it makes a huge difference and then he can return to the classroom.

In the past 5 months we have seen a huge improvement. He has mostly stopped hitting. Our goal is to give him coping skills to handle how his mind and body works. We still have a long way to go, but as I parent I feel like we are finally able to help him feel better about himself.

Let me know if you have any questions. Most people around us thought we were crazy they kept saying he is fine and just a normal active 4 year old boy. But my dh and I knew that something was just a little off. We are so glad that I read this book and got the OT eval.

[Cadam]

As quickly as possible get the book "the out-of-sync child". The chances are good you won't be able to put it down. That's number one.

next, - take care of you. It is very very very very hard to be the parent of a child with SPD, ASD or any special need really. It takes a tremendous toll on the family and especially the primary care giver. Take a bath, go for coffee after the kids are in bed, strap him in a stroller and go for a walk. I like going to target. I stick dd (ya the nearly 7yo!) into a cart, buy her a bag of popcorn and a drink for a dollar and wander around looking at cute purses and baby clothes.

Third is the OT and it sounds like you are pursuing that. I would also recommend a Developmental Pediatrician. In my area there is a 4-6 month wait to get in. They are the generalists of the specialists. They know enough about the range of special needs to dx and /or send you on to the right specialist. They also know about treatments and disorders that your regular Ped may never have heard of.

Take time outs when you need them and watch for the things that help your ds calm down. The out-of-sync child will help you spot some of those.

[ruthie5573]

Thank you so much! This is a dumb question, but how do you find a developmental pediatrician--is that someone I would get my regular ped to refer me to? I'm looking in my phone book and don't see it listed as a category under Pediatrics.

I have read "The Out of Sync Child" and that is what got us started on this path several months ago. We actually had an appt set up with an OT a few months ago and we ended up canceling because our son "seemed" better once we started the sensory diet at home. The past 2 weeks we've all been sick, so our routine has been totally off. Once we started a normal routine again, our 3 year old has totally shut down!!! And we've realized we need help! I think the inconsistency in his behavior confuses us--we think he's better, but I think we're realizing the times he is functioning better are the times when he's had a ton of sensory stimulus. He needs a lot of deep pressure--he walks heavy, loves jumping off the couch and falling on pillows, hiding behind pillows, etc. So, it makes sense when he comes up and head butts me or hits me...I think I'm becoming more sympathetic and trying to add things at home. But, we realize we need more help--especially since we're homeschooling and we don't have the school system evaluating him and giving us their opinion. Thanks so much for the advice!

[purplecow7]

I found my OT from asking other parents. I had to pay for the initial evaluation. I live in VA and it was $400 for two hours of testing and a write up. I found this to be worth the money. A few things on it I did not agree with, partly because I think my ds "talked" his way out of doing things that made his score lower. He is my charmer and it is how he compensates for his SPD - so I think it effected the results, but not by that much.

The OT services were $110 for 50 minutes. We did it for about two months. I did not find it worth the money so we stopped and I am doing the activities at home. We will see how this goes. My son SPD is very mild. So mild in fact that my Peds did not think he had any issues, nor did his teachers (minus the hitting) or my family, or my neighbors. It was only my dh and I gut that we felt there was something off about him and the hitting at school that made us get him tested. My son loved going, but I felt everytime I went it was like I was a new patient with the OT we would start new ideas but not carry them over to the next session and no follow-up on what we tried last week. Like we were about 5 session in and we had a very bad week and the OT said - "Oh didn't I tell you that he will have times of regression as his brain is re-learnig things" I was like No - that information would have helpful at session 2.

Right now I keep a log of what we are doing and how he does with it. How is day went and what I do with him when and what seems to be working. It is alot of work, but cheaper then the $110 a week. Also if we go back to the OT I will have some documentation for the professional to look at to help develop a better sensory diet for him.

[Kathy in MD]

Hi, I have 3 children and my DH and I are at a loss how to handle our 3 year old son. He is very bright and affectionate, but he is very socially and emotionally immature. We suspect sensory issues and in reading about Asperger's, we feel like there is something going on along those lines. We have gone through Early Intervention to see if he qualified for OT and he did not show enough developmental delays to qualify. Since then we are working on getting a referral to an OT who specializes in Sensory Integration Dysfunction. I guess I just don't know what else to do...can he be diagnosed with anything at this young age? If so, who would we see? I don't even know where we'd go besides OT. I guess a psychologist scares me. He is a precious child, but very challenging...he can't calm down when he gets upset, he's very obsessive, can't transition well, and is overly aggressive...I feel like I spend my whole day walking on eggshells and trying to figure out what he wants because he does not tell me what's wrong when he gets upset...he just freaks out and it turns into a long meltdown that ends with him usually throwing up because he gets so upset. It's very frustrating and we want to know where we go from here to figure out what's going on with him!? Thank you!

In severe cases, infants and babies can be diagnosed with SPD. Three is a great time to start OT. The secret, as with all treatments is to find a good OT experienced in SPD that works well with your dc. Make sure that your OT is trained in SPD and possibly even certified in it. There are many OT specialties and sometimes OT's will moonlight in another area. If you go to a large clinic, insist on meeting and having input with the actual OT that will work with your chlld. You should ask that your OT teaches you the warning signs of an incipient meltdown and how to stop it. Also she needs to teach you how to stop a melt down in progress. There are other things she'll teach you, including setting up a sensory diet, and probably the brushing and compression routine.

Some of your ds's problems may be a food sensitivity to dairy or wheat. From your need to walk on eggshells it sounds like he may have impulse control problems. You can search on my name and dairy on how to test for dairy problems. Unfortunately I don't know how to test for wheat.

Your best bet for finding a dev ped is by calling your local hospital of children's hospitall for a complete listing of the dev ped within a 4-6 hour dirve. Don't worry, after the initial consult, you should be able to do a lot of work over the phone. Mine, who I think the world of, worked with alternative medicine as well as conventional. She later became a DAN doctor, so by looking for DAN (defeat autism now) doctors, you may be able to find a good dev ped that looks at diet and other essoteric things. Note, I just had a converstion with a dietition who had never heard of the milk protein cassein (SP) having an effect on diet. She didn't by it until I told her about the testing and several blind counter tests I did with my ds. She may be a bit more receptive to it now.

[ruthie5573]

Thanks Kathy! We just got in to see an OT on Thursday. She specializes in SPD and gave me some wonderful resources and techniques to work with ds. She noticed some specific things about him that were really helpful and we're going to try therapy at home a few weeks and then go back to see her again. I think I'm going to start keeping a log of things with ds because it seems we go through some rough patches with him and if I had it written down it might give me some clues as to what sets him off. I feel like I'm chasing 3 kids all day and hardly have a chance to really pay attention to details!

That is interesting about dairy allergies...my ds constantly craves milk and we attribute it to his GI issues (still working on a diagnosis of all that)...could it be a dairy allergy when he craves something he's allergic to? Thanks for the info on finding a dev ped. We have an appt with an ENT next week to address some physical things like his enlarged tonsils, so we're kind of doing one step at a time to try to rule out different things. His little personality is so challenging!

[Kathy in MD]

I was lucky, I had only the one child so I could focus on him more easily. If at all possible, find someone else to watch your other two dc so you can observe the therapy sessions, if the clinic has the room for you. That's how I learned so much about SPD. That and we had a great OT who was as interested in teaching the parents as treating the children.

Sometimes people do crave what they're allergic to, however my ds said he didn't want to drink milk anymore around the age of 4 or 5. I insisted it was good for him and made him keep drinking it. I don't think he's trusted me ever since ;)

The ENT may also be able to solve some of your ds's problems, if his sleep is disrupted.