I want to go in fully prepared to advocate for DS1. I live in a very rural area, the nearest Developmental pedi is at a Children's Hospital 7 hours away. She is flying into my area for a week to see a very select few kids for a speciality clinic, and we are one of the few. We have one hour with her and then hour with her and his "team" to discuss. It will be myself, his old EI SLP, possibly his private SLP, and then a LCSW, who was sent out to my house to do a "psych" screening on him. She played with him for an hour and then told me that we could rule out autism because "he is too social". The pedi is new, has never done this clinic before, so one here knows what to expect from her.
DS1 is 3 as of this spring, and does qualify for services through the school district. I asked them not to attend because I have issues with some of the theories the therapists have about him. And hence the reason his old EI SLP is attending because she "gets him", she saw what I see daily with him. In therapy and during other evals, he is a model child, very few people see his behaviors. When I go through checklists for Asperger's, I can basically check every single one EXCEPT that he is highly social. In controlled, contained environments, like during therapies or evals, he WILL be an entirely different kid. I take him home and then he will line up his cars for hours, pace in circles until his feet bleed, and refuse to eat or drink for days all while not speaking.
So tips, advice, suggestions are gladly welcome. I put together a 1.5 page bulletin point, very easy to glance over, list of my concerns with him. Oh and video of him pacing and going "mute" where he will only shake his head instead of using words. I also want to go in with arguments against ruling out anything just because he does not eval well and loves adults.
Rachelle, mommy to 8 year old boys!
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Oh yes, definitely other issues. Significant speech issues (he comprehends, but expressive is delayed and he has echolalia) he does not understand nonverbal communication other then shaking head yes or no. Can't "read" others, zero interaction with peers unless to be aggressive, content to be alone for hours, very repetitive behaviors, obsession with all things car related, abnormally long attention span, on and on. Everyone so far just ignores all that and focuses on the fact that he does make eye contact and smiles at them and just tells me that is his personality and the only issue is his speech.
It sounds like he does fine with adults, but that there are issues in his social development with his peers.
Until very recently, Asperger's wasn't dx'ed until later because all of the traits of Asperger's can occur in completely normal toddlers and preschoolers. The real difference comes when children don't outgrow these traits.
How does your child do a list for PDD-NOS?
Is your child in preschool or will he start preschool soon? The observations of the teacher could be very helpful in figuring out what is going on.
In addition to speech, has your child been formal dx'ed with sensory integration issues?
What are you hoping to gain by a more encompassing diagnosis at this time? Although I'm a huge fan of getting kids therapy and help when they are young, I don't think the exact label is uber important. You'd be surprised how many kids get re-labeled as they get older. Would it really make a difference if he were labeled with Aspergers now, or if that was delayed until he was 10? For him, would it make a difference in what services he was provided?
What is the schools districts theory for your son's delays? What do you feel they are missing when they see him?
but everything has pros and cons
I started off wanting to know what else if something else is going on besides his speech. I bumped him up to 8 hours a week all the fall/winter/spring with minimal improvement, progress yes, but very slow. He has been in speech therapy since 19 months of age.
No preschool yet, will start in the fall. I should look at a list for PPD-NOS, I haven't. No dxing of any issues have been done. He did attend a speech program at a center that caters to SPD and nothing was said about him.
The school district thinks he has anxiety issues, that explains his pacing, his periods of muteness, etc... You would have to know my DS1 to realize that the kid has NOTHING close to anxiety. He has no fear, no issues with separation. Heck, I could guarantee that I could leave him home all day tomorrow alone and he would not care, I could send him home with the next person that walked by and he wouldn't care. My DD1 does have an anxiety disorder as does my DH, both take meds and the second the school district heard that, they jumped to conclusions.
I truly do not care what his dx is, Aspergers, PPD-NOS, or just a quirky kid with a speech delay. I just need to know what else I can be doing to help him, because what ever I am doing right now, is not working. He gets (and only during the school year) one hour of speech a week and one hour of early childhood ed through the school district, I pay out of pocket for another 1.5 hours of private speech a week now. We had been doing another 6 hours a week of group speech therapy through that center but it is closed now. The school district will not offer us anything more right now, a dx might change that. He is supposed to go to a regular preschool this fall that does not take unpotty trained children (he is not potty trained) and is not fenced when he has a history of bolting or wandering because there is nothing else for him currently as "just a speech delayed child". Something needs to change, he needs to eat, he needs to not pace until his feet are bloody. I know a dx will not stop that but living in this very rural, isolated area, it might open up some more doors for us. And if there is no dx, and this really is just his personality, well, then I tried and I guess I'll have to figure out what to do then.
I used to believe the same thing about my son and anxiety, down to him not caring if I sent him home with a stranger; then when we did the hospital eval when he was 6yo 11mo we found that things that didn't look like anxiety to us, were manifestations of anxiety--such as when ds would "freeze up" and refuse to move/communicate.
My ds has always made eye contact, but it was fleeting; he looked in your eyes, then looked away, then looked in your eyes again (repeat). Also, Aspgerger's doesn't mean that a person is not social but that they have difficulty with appropriate social interaction (social reciprocity and pragmatics); so providers shouldn't cite this as an excuse not to diagnose. This difficulty can be more evident with peers while interaction with adults is often more "normal."
So, your goal of a diagnosis at this point is to access services the school says he doesn't qualify for.
I would bring this up before the end of the appointment, particularly if it isn't going well for you. Point to your bullet list and say "look, this is not normal behavior. Without a diagnosis and a recommendation for (x,y,z) services, the school in my very rural, isolated area will continue to deny he has any problems at all."
The state is required to provide FAPE (Free And Appropriate Education). If his issues (even if is anxiety) prevent him from getting FAPE then they need to provide those services that make FAPE possible.
The only way to determine if a disability exists with a child is through comprehensive evaluation.
The school can't evaluate just by casual observation, they need to use actual evaluations (developmental scales) which you are entitled to have a copy of. "From Emotions to Advocacy" has a sample letter for requesting your child's complete educational records.
My case is very similar to yours. The checklist for Aspergers - all are 2's and 3's except for the social part. He is *very* social, but doesn't know how to interact properly.
DS has just been diagnosed with Aspergers in the past month or so. It was so hard to get others to see what was going on because he is a totally different kid when we take him out. A few weeks ago, we went for an appointment (he was having a bad day) and the doctors finally saw him acting the way he does at home all the time.
I am so new in this myself that I don't have much info for you, but I wanted to say I think you're doing great by your son to keep seeking, even though it gets frustrating.
Im hoping you get the help you need in his upcoming appointment!
Oh - and one thing that really helped me was getting a video together of how he acts at home and showing it to the doctor!
Wife to - Mama to DS 6/08 and DS 9/11