Point of desperation...

(Atlanta, GA, USA)

My son is almost five. Seems like a good start, right?

When he was a baby, before he'd even had his first feeding, he managed to pull off his diaper. Couldn't sleep after we left the hospital unless he was being held or rocked. Even back then, couldn't seem to keep his eyes in one place.

Toddling, he did most things 'right on schedule'... Except talk. Took me ages to get him to say anything, and I can laugh a bit about his first true word being 'cracker', which at the time was just about the only thing he'd eat. Hid my shoes so I would have to stay home. Learned how to change channels on the TV, and how to read a clock by himself- I NEVER taught him those things!

The past year or so though, some odd things are piecing together. In public bathrooms, and sometimes at home, he won't flush because he says the toilet is too loud and scares/hurts him. Even when he does, he'll push the lever and run screaming with his hands over his ears. He's become even more of a picky eater, and gags (accidentally or on purpose, I'm not sure) if made to eat something he doesn't want/like. He can't sit still, which earlier on had most of my family convinced it was ADHD. He hides from the vacuum or any other loud noise, yet can't stand being quiet himself. He'll complain he's hungry, and then that he's full after 2 bites of food. He has to have his stuffed animals in bed or he doesn't feel safe enough to sleep. He has a set list of tv shows he likes to watch every day (educational, or I'd enforce a time limit), but if anybody says a word to him and interrupts that routine, it turns into a full scale battle. When he throws a tantrum, any attempt at keeping him in one spot is met violently. He behaves horribly on weekends when my fiance is home from work, and evenings as well, but is *usually* fine when it's just the two of us. He bites his nails and chews his fingers. He has trouble with zippers. He won't touch bare feet to grass or he full-out panics... The list goes on.

I'm nearly in tears right now, because I printed a checklist out from this site, and there are so many signs he shows of SPD that I'm not sure I could deny it if I tried.

In fact, I realize now I've shown some signs of it my whole life as well, but never badly enough to make it an issue.

And the worst part, I have no insurance. I have health problems, I can't go out and work a 'normal' job, and I can't get put on my fiance's insurance for a few more months. And I CAN'T STAND IT. The fights that happen over dinner and when bedtime is and what's allowed and what's not, and I don't know what to do. How can we live with this when we have no resources for help?

Please, what do I need to know? What can I do? Therapy isn't an option, we simply can't afford it right now. What routine, what stimuli, what

words, what actions? I don't have anyone else to ask and nowhere else to turn, you all are my last hope.

The SPD Help Line Answers…

Eeeewww… no insurance and a limited income. Hmmm… that could definitely be a problem. The first thing I would do is apply for Medicaid (or whatever your state run insurance for lower income people is)! Not having insurance could be a big problem in so many ways. Are you getting married in a few month’s? Is that how he will get on your fiance’s insurance?

Until you can get on some type of insurance and/or afford some therapy (which he REALLY needs… you know that)…

First, I would see if there are any services through the school system you can get. Is he having problems at school? See if you can get any evaluations through the school, not necessarily for SPD, per se, but for any academic or social issues he may be having that might be interfering at school. If you can start there, it would be free and might get the ball rolling on some helpful therapies or assessments… until you can get some insurance.

Second, I would try to budget your money to at least get the initial SPD assessment. Insurance may not even pay for that… so start saving somewhere to pay for this. It could be as much as $800 for a thorough SIPT Evaluation. If you have to stop going out for dinner or buy cheaper no name brand products or spend less on a variety of products or bills, do so. Everyone can cut something out for the sake of getting your child the things he needs. Save, save, save in any way you can. It will be well worth it!!

Third, make sure you read the following articles, as they will give you some ideas of things to do in the meantime…

Sensory Diet

Using SI Theory To Help Solve Problems At Home

Using SI Theory To Help Solve Problems At School

Heavy Work Activities

Treatment Activities

Financial Help For Sensory Products

Also, get your hands on The Out Of Sync Child and The Out Of Sync Child Has Fun, as well as Raising A Sensory Smart Child. You will have a better understanding of what is going on and ideas to help him from these books for sure.

Lastly, join the online support group SID-DSI_AllAboutKids to talk to over 1,000 other parents of SPD kids. Surely there will be many who can make some specific suggestions for you!

For now… bottom line… a good sensory diet with a lot of proprioceptive activities, the online support group, and make sure to get him the evaluation and official treatment by an OT as soon as possible… you will get so much further with professional help!! That may be the only answer for him. So, please help get him there, any way you can. Meanwhile, see what evaluations could be initiated through the school system if he is having problems at school too.

Anyone else have any ideas for mom? Please let her know. Anyone been in this position before and have any ideas on how to get some professional help and/or OT services??

I hope this helps some.

Take good care.
Michele Mitchell

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Apr 02, 2008
Wonderful Web Site
by: Maraiah

I just found this wonderful site called yellow pages for kids. It lists all resources for children with disorders. All you have to do is enter your state and it comes up with all sorts of listings. The web site is www.yellowpagesforkids.com

Check it out and see if anything on there will be helpful to you.

Best wishes,
Maraiah DeCol
Sandy, Utah

Mar 03, 2008
You poor thing!
by: Anonymous

I agree with Michele that it's a bummer that you may have a hard time getting your son in therapy, at least for a while. My son is almost 4, he's been in therapy for about 6 months, and he is such a testimony to its effectiveness.

What I can tell you though, is some of the things I changed about MY parenting during this process. For one thing, I became much more predictable. I am naturally a very spontaneous person. Something pops into my head, and I'm ready to go. That sort of thing is HORRIBLE for AJ though. So I've tried to be very consistent. Every morning and every night, we do practically the same thing. I think even the fact that I say exactly the same prayer every night is comforting to him.

What I've also found is that you can put an element of routine into non-routine events as well. When we're going to do something out of the ordinary, or even just going to the store before we go home after school, I verbally prepare the heck out of him. I tell him over and over what we are going to do, and what rewards might be in it for him if he behaves, and then I ask him over and over what we're about to do. I've noticed now that he likes to repeat a few times in order the next few things we're going to do - even when it's routine stuff.

Now say we're at the store and he starts to melt down. I use a calm voice and remind him of the conversation we already had. "Remember in the car I said we were going to the store?" "Yeah" "And what did I tell you you would get if you behaved the whole time?" "A piece of candy" "That's right. Now do you want a piece of candy, or do you want to go to time-out?" "Candy" And that's that usually.

I've found with him that giving him options ALWAYS also gives him a better sense of control. The other trick is that when he's having the melt down - I have to get him to focus on me before I can reason with him. I used to try to talk to him and it would make it worse. Now I'll just calmly say "look at me" over and over until he stops crying enough to look at me and listen.

I know it's tough and it's probably harder for you because he's older. The fact that he's verbal will help a lot with the coming process though. Mine was not verbal when this all began and it became MUCH easier once he could communicate. Good Luck!

Mar 02, 2008
Insurance in Georgia
by: Joy

Hello ,
My name is Joy. I too Live in Georgia. I am raising my 5y/o grandson whom was recently Diagnosed with ADHD combined type, Developmental Coordination Disorder, Expressive Language Disorder, as well As Sensory Processing Disorder. I had Him tested at the Marcus Institute there in Atlanta.

Don't give up hope just yet as I have a phone number and name of someone that can shed some light on your insurance needs... The lady's name is Sasha Green the number is 404-463-8368. This lady is head of Peachcare for kids. You really need to call her she's a wonderfully helpful lady and she can steer you in the direction you need to get your little boy what he needs. Give her a call.

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