Finally Diagnosed/Still Concerned

Hi, I haven't posted anything in awhile. My son was finally evaluated in October 2008. He was diagnosed with 47xyy syndrome, sensory processing disorder, unusual sensitivities, and an unusual history of pica. We saw a Geneticist this week, to get more information about this syndrome which isn't much.

Some websites describe this syndrome as if it is no big deal. Others talked about immaturity, delayed speech, delayed language skills, behavior problems, weakness, poor fine motor coordination, developmental delays, and learning disabilities. There is also information saying that at one time 47xyy syndrome was linked to aggression, and criminal behavior. Even though the geneticist reassured me that studies have found that not to be true, the information is still out there.

I'm still struggling with the school district to test my son. He is in Independent Study through the school district. I was told that for them to test him, he had to be enrolled in a regular class (I recently found out that is not true), which I was totally against because he had not been tested yet.

The Geneticist wants to do more blood work to look deeper in his chromosomes, to see if there might be anything else. During his evaluation, I mentioned him possibly being autistic, or having an autism spectrum disorder. Because he interacted well with the doctor, he did not meet the criteria for an autism spectrum disorder.

When I take my son out in public, he cries when anyone talks or looks at him. Sometimes he will try and hold a conversation but the more questions they asks the more frustrated he becomes. Being a single mother (who is dealing with Panic Attacks/Agoraphobia and possibly SPD, I'm starting to feel overwhelmed with everything.

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Jul 21, 2010
by: frustrated granny

My grandson was diagnosed by default with xyy age 4 1/2, he is now nearly 8. We received virtually no information except I suspect the same 1 page age yourself.

We have found that he suffers from all the problems that you have mentioned, but it is his lack of social interaction with anyone he is not familiar with that has been the most frustrating and has led to major problems especially in school. He attends mainstream school but gets full enhanced provision., he craves friendship but is unable to make friends or sustain them for any length of time.

He is also very immature for his age, but we have found over the last year that his body is changing, he seems to be prematurely starting to go through puberty, when we questioned the doctor about this his answer was YES that is possible, why do they not warn families that this could possibly happen? My grandson can also be very aggressive at times for no apparent reason, or on the other scale he can burst into tears for the slightest wee thing.

This syndrome is very much underplayed, and misunderstood. We have felt that we have a constant battle on our hands on lots of different levels.

Please fight to get your son tested for ASD, if you have any suspicions, or your gut feeling is that their is more to him than has been diagnosed, after all your the one who knows him best.

We have been going through the autism diagnosis procedure for 1 yr. now and are getting the ADOS test done early next month but it will be September before the results are available, even then they have warned us there may be no definite diagnosis, then it will be back to the drawing board again.

My daughter is also a single parent with another younger child and finds it very difficult some days, I worry about her, as well as the kids. Keep smiling and keep on fighting for you and your son.

Mar 22, 2009
Finally diagnosed
by: Carolyn

I am a Special needs teacher and I work in the public school. I have a classroom that has been classified in my school district as a functional academic classroom. Most of the students I deal with are border line Mentally Retarded and most of them have some type of sensory issues. One or two I even believe have some type of autism.

My advice concerning the testing of your son and the school district is to not let it go. Continue to look into it and especially beware of your rights and your son's rights. If you don't agree with something then look into some more and don't hesitate to ask questions. If your school district is anything like mine they do not do much to educate parents concerning their rights.

Most of the time they will allow parents to be ignorant so that they do not have to spend the money on further testing or offer the services the child really needs. I am not saying all school districts do this but mine does. Even after you have your son tested and they agree to provide services, follow up on what they are doing.

Hold them accountable and don't hesitate to say something if you see they are not holding to their agreement or if you get that far your son's IEP.

Mar 21, 2009
I understand...
by: char113

I just want to tell you that you are not alone. Please just remember to take time to take deep breaths and appreciate your child for who he is. My son was just diagnosed with SID. He is five and scheduled to start kindergarten in the fall.

He is now receiving OT. It's only been 3 weeks and I already am seeing some improvements. Please just know that you are your child advocate. Get some books to tell you how to deal with your childs issues. The book I recommend is the Out of Sync child it is AWESOME. Good luck and know that you are not alone.

Mar 21, 2009
ASD and adult interactions
by: Ericka Morgan

I just wanted to respond to part of your post. You mentioned that your son didn't meet the criteria for an autism spectrum disorder because he interacted well with the doctor? Maybe you should get a second opinion! I say this because my son was just dx with Aspergers, and the point I made to the doctor is that my son interacts fine with adults HE LIKES-but he does not ever want to interact with other kids! So there are kids on the autism spectrum, like my son, who might readily interact with a doctor. That doesn't mean there is no autism.

I would look into Autism spectrum disorders, and possibly go back to your doctor with more information. And you might want to take some time to examine how your child interacts with other children-that can be the key factor! hope that helps, Ericka

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