I would just like a diagnosis. - Mothering Forums

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#1 of 8 Old 01-17-2008, 08:33 PM - Thread Starter
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How many times over the years have I posted here? I have no idea. I go back and forth between, my son (4.5 years) is typical but just has an unusual personality, to, he has special needs and will need support to succeed in school. At the moment I am leaning toward special needs. Here is what is going on, with some background first:

*Poor eye contact at birth, dx'ed w/ strabismus, which cleared up but eye contact never got much better, almost never self initiated, never sustained

*Fussy baby, difficult to console, for no apparent reason. Liked to be held facing out, not cuddly.

*Relatively early talker but more labeling of objects rather than engaging in conversation; now has typical expressive language but doesn't appear to always hear me when I speak, I think he has poor auditory processing, definitely cannot follow multi-step directions; rarely complies on the first request to put on coat, for example; lisping is a sign of stress or lack of sleep

*Little emotional control; cries at the drop of a hat despite a nice, stable home life; gets upset over very very small things, especially if something is not, in his words, "correct" or if things do not go as planned in his mind

*Plays great one-on-one but gets overwhelmed in a group

*Needs a security object or he "crumbles" in public (usually holds a small character figurine in each hand)

*Struggles with loud sounds (hated the bowling alley, covers ears in public restrooms, wants to know what every sound is)

*Many seemingly irrational fears (being alone in any room of the house, especially afraid of his room, terrified of wind to the point of panic)

*Affectionate only on his terms--don't dare try to hug or kiss him without permission!

*Poor impulse control--hit me on the head with a (toy) baseball bat today but didn't seem to be being malicious, just seemed to do it completely and utterly without any thought

*We have been to Child Find but his only delay was fine motor (6th percentile) and mild receptive language (40th percentile--not enough to qualify for services)

*His ped thinks it is either an anxiety disorder or auditory processing disorder or possibly he somewhere on the autism spectrum. He admitted he is not qualified to make the dx and is sending us to a fantastic developmental ped/neurologist.

You're reading this thinking, of course he has special needs. But honestly, no one would know all this stuff unless you knew him really really well, or unless you knew a lot about autism spectrum disorders or anxiety disorders or ADHD. I really have no idea where he belongs in all the alphabet soup.

We are trying to decide about putting him in pre K vs K next year. His current preschool has a great pre K program. It is half day with 12 kids and 2 teachers. The curriculum is similar to K but it is more sheltered for kids who are immature or struggling socially. I think it would be the ideal place for him, esp. since our K is full day. He would literally drown in there. I guess my mind is made up--I just need to take the steps to make it official. One problem is that we have permanently discontinued vaxes and I'm not sure if the church preschool will accept our religious exemption. It is accredited by the state of Virginia if that makes a difference--I'm almost scared to ask.

I wish we had a dx so I could get some books and start reading. I want to know how to best respond to his tantrums and fears, and to learn to help him cope with the stresses of daily life. Any advice or thoughts are appreciated. Thanks
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#2 of 8 Old 01-17-2008, 09:45 PM
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He sounds much like my dd, who is not yet diagnosed, but I am sure has SPD. Even people close to her have said that they don't really notice all the things I see. But I think people just think she's a little quirky and don't notice that she doesn't look them in the eye and they don't know that she stares at them out of the corner of her eyes and such. There's a symptom checklist at www.sensory-processing-disorder.com and lost of great info as well. The only book I have read is The Out of Sync Child Has Fun. It has helped a great deal in my household. Is Child Find through your local school district? I'm still prety new to all this, but I've been told that the P.S has to help them according the federal law about free and appropriate education. About vaxes, I also claim a religious exemption at our church and it is not in the general church doctrine (the Bible). There is a scripture, which is escaping me at the moment, which says that to go against your conscience is sin. I told them vaxing my children would be a sin for me because it goes against my conscience and that's my religious exemption.

Jessica, mama to Emma, 7, Mattie, 5.5 and Lilly, 3 and someone new this Halloween-ish.

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#3 of 8 Old 01-17-2008, 10:14 PM
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I would agree with your pediatrician that he could be on the spectrum and have anxiety issues, which seem to go hand-in-hand. From what you've described, he also might have sensory issues, which occurs in a lot of kids on the spectrum. I myself am all of these things, and I have a lot in common with your son; I'm very sensitive, and I was a lot more sensitive when I was little; I have trouble in loud, crowded places; I wasn't very affectionate with my parents; and I had/have a lot of irrational fears. If he is diagnosed as being on the autism spectrum, he would most likely receive a diagnosis of Asperger Syndrome as opposed to classic autism.
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#4 of 8 Old 01-17-2008, 10:15 PM - Thread Starter
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Thanks Jessica. Yes, Child Find is through the local school district. Before age 3, it is called Early Intervention. I think it is the same in every state but I am not sure.

It is comforting to know you got an exemption through your church. I believe that God would not want me to knowingly cause harm to my children, and I believe that vaccines can cause harm (of course diseases can too, but I have to go with what I believe is the least risky option) but I guess that's a discussion for another board.

Anyway, I looked at the SPD link but honestly, that does not sound like my ds. On the surface it does (sensitive to noises, wind, needs to hold onto something) but on the checklist, he had almost none of the items. He isn't always on the move, he has always been a great sleeper and has never had eating problems, he never complains about clothing or temperature. He does fine in restaurants and malls, or anyplace that is familiar and he knows exactly what to expect (i.e. in the mall he knows he can sit in the stroller and hold his toy and he feels safe--yes he still needs a stroller because he will walk into people without ever seeing them and he refuses to hold my hand, always has except when I make him do it in the street).

But that's the problem--he doesn't quite fit any diagnosis. And I'm not even sure why I'm so fixated on getting one. I guess I just want an explanation for all of the things I don't understand about him. And I know that I may never exactly get it. As long as he is happy, that's all that really matters.
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#5 of 8 Old 01-17-2008, 10:59 PM
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I'm in the same boat except I'm waiting for an appointment with a neurologist. Only another 4-5months to go : My DS is obviously SPD with a lack of expressive communication. My close friends see him and other than he doesn't talk much they can't see anything 'wrong' with him. At least they are really supportive and do their best to talk to him without overwhelming him.

The SPD checklist is hard. The first time I skimmed the book The out of sync child nothing seemed like DS. Then I actually bought it and read it. My DS is 100% a sensory seeker. The thing with SPD is that some kids are not consistent. They are defensive in some areas and seekers in others. :
It's enough to boggle the mind! You might want to read up on it a bit more. If you think his behavior is getting in his way then you might want to go ahead and go through child find. If for nothing else than your own piece of mind.
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#6 of 8 Old 01-17-2008, 11:57 PM
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I think a good step would be an appointment with a developmental pediatrician or a good pediatric neuro-psychologist. After that evaluation you'll have more information about what the possible dx are.

That being said, even with a diagnosis it's going to mean very little in some ways. My son is PDD-NOS (a category of autism) and he's unlike 9 out of 10 other kids with PDD-NOS. They're not kidding about the "spectrum" part of the label. Every kid really is different. Ds fits many of the autism behaviors to a tee, but then in some categories he's very unlike the "classic" description. Still, according to the evaluation scale he's severely autistic.

There are a few books that keep getting mentioned here, and there are lots of good discussions about kids with SPD and AS. If you hang out more I think you'll pick up a lot of information that will help all the puzzle pieces make more sense.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#7 of 8 Old 01-18-2008, 12:05 AM
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Your son sounds a bit like my three year old. He was diagnosed with pdd-nos recently. His issues aren't seen by most outside people. The spectrum is very wide.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#8 of 8 Old 01-18-2008, 12:53 AM
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He sounds a lot like Ivy, who is undiagnosed right now at 4.5 years old... but EI suspects autism spectrum.

treehugger.gifAutistic pagan mama with five kiddos on the spectrum, learning through living life. autismribbon.gif  computergeek2.gif

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