SID/Language Delays

[Iguanavere]

So I think the day is inevitable that we are going to get some kind of dx that our son has auditory/visual integrations problems, SID and language delays.

I've had a really trying time parenting my son. For the most part I find him to be easy - so if he does have any of these problems, they are mild.

But he is also really hard to handle at times and exhibits some really strange behaviors.

For example: If we try to talk to him about his behavior, redirect him or anything reprimanding, he tries to change the subject, says "it's ok" or just glazes over and goes to his happy place. It's like talking to a wall.

He has started to fall down intentionally or bump into the wall. He then falls down and announces "i fall down."

He speaks in a very rudimentary way, even though he is 3. He can't talk about things that he has done, is doing or wants to do.

He can't seem to "see" things, even if he's standing right in front of them.

I constantly get comments about how he is a "hand full" and pity looks from strangers.

He has started some strange arm movements like he is trying to swim. He loves to jump.

He will only eat white food and fruit. A Very picky eater and didn't start eating until he was 20 months.

We have a language evaluation in 2 weeks. I hope it goes well. We feel like we have been at the end of the rope for a while now and it's been really frustrating because none of the "gentle discipline" has really helped in making things works.

Your child has to have a decent receptive language in order to understand what you are saying.

I'm concerned about "labeling" my son. He really does seem normal. It's been suggested to me that I'm just not strict enough with him and that I should spank him.

Part of me just thinks that he is an active 3 year old boy - and that these labels are just for people who don't know what a real 3 year old boy looks like. But we are faced daily with strangeness - things that just don't feel right to me. He completely ignores my requests and I am not that arbitrary.

Anyway - am planning on homeschooling, but I really need some guidence - I'm just not sure how to feel....

I guess I feel a little failed - like I failed and people around me failed.

have you all shared your child's dx with family? I just don't think I want to....

[khrisday]

Well, if it makes you feel any better- the "strange behavior" that you mention, all sounds perfectly normal for a chidl with the problems that you know your child has.
The falling down is a sensory issue- he's looking for some deep pressure. Try a deep tissue massage, bouncing on a trampoline, piling pillows on him, wrapping him up in a blanket or towel, etc.
I did share our diagnosis with family. I wanted them to realize that my son has neurological problems that affect his development rather than them just thinking that he was the victim of poor parenting. I also wanted them to understand the huge amounts of stress that our family was undergoing. Many people do choose not to tell, though. That is a personal choice.

[geekmom]

My suggestion is to get him evaluated and evaluated and evaluated until there is a result that makes sense to you and feels right. I find that parents really do know their kids and they do know if there's something "off". Although you say he seems "typical" you are also feeling very much like there is something a bit "off". Your instincts are right I'm sure. It is a pain to get kids "labeled", but if you use the label to really help address his needs then it's just helpful. Do it while he's young. If you can figure out what's going on and help him learn how to deal with it then you can avoid having his school mates know about it as he gets older. Please don't wait any longer. 3 is already old for some issues. when the child is young very few people have to know the name of the issue and also the children aren't affected self-esteemwise, they jsut figure it's them. Do as much as you can as fast as possible. Find a developmental pediatrician. Also, make a guess that he's got some food related issues if it took him that long to start eating and is very picky. You may have just some issues that a drastic change in diet could address. Do some reserach on the internet about his symptoms and keep asking questions.

[jdross]

My ds was just diagnosed about a month ago. We are just starting to tell people and I find it a great relief. The really sad thing is that my dh was also diagnosed with adult aspergers, which make sense in a way considering the issues ds has. My dh has been less inclined to share his diagnosis - out of shame- but again I find it a great relief-it puts in to context the stress this little family has. Friends seem more understanding than family-in the family it shatters the myth that everything has been OK.

As for the normal vs abnormal, my current mantra is go with your gut.

[Iguanavere]

geekmom - what kind of drastic changes are thinking as far as diet is concerned?

We are on an allergy elimination diet right now, no eggs, dairy, nuts, strawberries or tomatoes.

Almost all of his rashes are gone, but his palate of foods that he will eat is pretty slim. mostly fruit, greenbeans sauteed in olive oil and soy sauce, white rice with soy sauce and wheat bread.

He loves french fries and chips. Those are my fall back foods when I'm feeling desperate.

Have any of you seen improvements with occupational therepy or music therepy?

Was language delays an issue for you? Ours seems to be receptive language issues or visual/auditory issues.

[geekmom]

Elimination diet makes sense. I've seen these language and SID types of things respond to gfcf (gluten free, casein free) diets. It's good that you're already open to dietary changes. Look up such things on the Internet and see if it helps your son after awhile.

[khrisday]

occupational therapy is a *must* for kids with sensory integration issues, it helped both of mine. Read The Out of Sync Child.

[Iguanavere]

I'll look into the Gluten Free stuff - I have in the past and I'm open to doing it , but I need to get my life stress free (or less stressful) before I tackle that.

I have a question about the evaluation - we are having a full language evaluation. Is the evaluator going to be able to pick out issues that may have more to do with SID? Do I have to take my son to someone else to either dx SID or rule it out?

I'm also feeling confused because it seems like DS is talking fine and then things seems strange with him. On the one hand I wonder if a speech evaluation is what he needs? Does this make sense?

Also, after feeling really confused and sad about all this, I discovered an analogy that I really liked and made me feel better.

I am going to think of DS the same way I would a breech birth - just a variation of normal, but which needs to be managed in a different way. ;)

[khrisday]

www.gfcfdiet.com has really good information

A good speech pathologist will be able to notice some sensory issues, but they can't diagnose or advise you on it. He *needs* to see an occupational therapist about sneosry issues. You also may want to pursue a thorough evaluation from a developmenat ped, a psychologist or a neurologist.

[wemberly]

An SLP looks at both speech AND language, so although your ds may be speaking at an appropriate developmental level, he may not be using language appropriately. A well-trained SLP will be able to note this.
OT to aid with the SID diagnosis is a must. In the meantime, read everything you can get your hands on. Definitely the Out-of-Sync Child, but I'd look closely at "is this your child?" by Rapp, and "children with starving brains" by Mc Candless. There is also a highly useful SID/DSI yahoo group. It is a wealth of information about therapies, websites, new books, biomedical interventions, etc . We recently moved from Chicago to Philadelphia, and the SID group has been my primary source for information about new doctors, therapists, etc. Good Luck mama!

Paige

[flminivanmama]

My ds has SID and sounds much like you described... I find things get better (though not the responses like you described) if I am consistent in providing lots of deep pressure and other sensory stimulation... pushing a ball into a toy, sit and spin, rolling on the bed with pillows, deep hugs, swimming, vibrating toothbrush, sour drinks - like lemonade mixed with cranberry juice, hard to chew foods - like a bagel....