Question (long)

iVillage Member
Registered: 09-22-2005
Question (long)
3
Fri, 09-24-2010 - 2:33am

Hi all,
I am new to this, but my DS recently started kindergarten this year and we are having some problems.

DS was in 4-K last year and at the tale end of the year his teacher gave me some information on tactile dysfunction and said that the school psychologist had been in the room observing another child and noticed DS exhibiting some of the signs. I read the info and did some extra research and I can definitely see some of this in my DS. I've always suspected there was more going on with him but when brought up at his yearly check up I was always told he is a perfectly normal little boy. I should have listened to my gut.

On to summer school, I really wanted him to have the social interaction because he struggles so much in this area. He is extremely bright, but he just doesn't understand how to function in a group. The teach complained about him to me everyday. I just didn't know what to do. He doesn't hold his pencil properly, he won't stop pretending he is an animal (he will actually growl at the other kids when he is upset), I didn't know what to do. He would receive consequences in school and the teacher would tell us we needed to talk to him and give him additional consequences at home. How will consequences at home make him raise his hand in class? How will consequences at home make him use words at school instead of growling when he gets upset?? Needless to say DS didn't finish the summer school program. It was not to his benefit, this teacher did not want to try to understand my son and she did not want to talk to me about what was going on in the class other than to tell me all the things he was doing wrong.

I was dreading the beginning of the school year. All I could think about was how he was going to hate it, how I was going to receive phone calls telling me how difficult he was. But, his teacher has been a breathe of fresh air. I actually talked to her about the issues we have had in the past with DS, what happened with 4-K and summer school and I told her what to expect. The second week of school DS started to show more predominant signs of the things I had read about and would become agitated much more quickly than normal and the day I had decided to talk to his teacher about it she actually beat me to the punch. DS's teacher actually has a background working with special needs and autistic children. She put the school psychologist in contact with me and I am currently waiting on the paperwork for me to sign (there was some miscommunication) so they can start testing my DS to find out exactly what is going on with him. Some of the things they are thinking are possibly Educational Autism, tactile dysfunction or Asperger's Syndrome.

On one hand I am so relieved that someone finally saw what I was seeing. A beautiful, loving, incredibly smart little boy who was struggling to function in everyday life. But on the other hand I am scared of what the psychologist and therapists will find.

So far his teacher has been amazing, she has already made some changes in her classroom for him, she is trying to meet his educational needs as well as help him function in the room with all the other children. He started kindergarten already reading, writing and doing basic math.

Anyway, if you got this far, thank you for reading all that. :)

I guess I am here because I am just wondering what the testing process was like for your children as well as for you as parents. I've read the info and understand what I am reading, but each person has a different experience and the information I've read cannot give me the individual's perspective. KWIM?

So, anything you can share with me that you think may be helpful is greatly appreciated.

Thanks so much!
Tiffany
DS 6
DD 4

iVillage Member
Registered: 06-25-2005
Sat, 09-25-2010 - 12:56am

My kids were older (8 & 12yo) when they were diagnosed with Asperger's Syndrome (AS). I'd had many questions for the pediatricians over the years that were dismissed. Each symptom, addressed individually wasn't concerning. It wasn't until a pediatrician finally looked at the comprehensive list of symptoms that they realized there were some developmental delays.

Even tho' I was the one pushing the doctor to help me figure out what was "wrong" with my kids, I was surprised when the pediatrician first floated the phrase "developmental delays." That had never occurred to me since my kids were so smart academically. Almost as soon as I started reading about developmental delays and AS, I knew we were on the right path for getting a diagnosis.

When we got formal testing (by a team of doctors at our local Children's Hospital's neuropsych dept) done, I was not at all surprised by the diagnosis. It was such a relief to PROVE that I wasn't crazy for believing my kids had legitimate food issues and coordination issues, sensory issues, etc., that it wasn't just bad parenting! Even tho' it was a relief to get a formal diagnosis, it was also one of my hardest days to realize this was REAL.

My favorite quote from the doctors was that "it's less important what diagnosis you receive but that the diagnosis you get matches the symptoms you see in your child." I also appreciated having people point out that getting a label for your child doesn't mean your child is any different than they were before the diagnosis. It just means that you now know what you're dealing with, so you can provide better supports for your child. Avoiding getting a diagnosis doesn't change the symptoms and just makes your and your child's life more challenging than it needs to be.

I thought that getting the formal diagnosis was helpful since my kids were getting older and finding more challenges in school. Getting even small accommodations made a big difference in my kids' school performance.

You're very right about good teachers making a big difference. We've been blessed to have mostly very understanding and good teachers who liked my kids. School is hard enough when the teachers are supportive of you, that I can't imagine how much more painful when the teachers are not.

iVillage Member
Registered: 09-22-2005
Fri, 09-24-2010 - 3:09pm

Hi sfc,

Your reply made me laugh, cry and hungry. I'll now be making some chicken for dinner. ;)

Thank you for taking the time to share your story with me. I think it is crazy what you went through to get your son what he needed. And it truly made me thankful for Ian's teacher and the minimal problems we've had so far in comparison. I can't even imagine what it was like for you and your son to go through all of that. It makes me happy to hear that there can be a good outcome after all of that.

I am hoping that by doing the research and talking to others that have 'been there done that' I can enter this process well informed and be a strong advocate for my son. I just want what is best for him, as does any parent. :)

My DH is very apprehensive about all of this though. He is being supportive but he is afraid that they are going to try and push meds and our son will wind up a zombie. I understand why he feels this way. He was diagnosed with ADD when he was my sons age and his mother pushed the pills, but I think they misdiagnosed him. His childhood was terrible. But he is determined to be a better parent than what his sperm and egg donors were and so far I can't complain at all.

As for the rest of the family, I always got the 'he's just an active boy that needs more social interaction' schpeel... But, now that the teacher has said something validating my concerns everyone is all ears and has opinions about what is wrong and what needs to be done. Soooo annoying.. lol

Thanks again for sharing with me! :)

Tiffany

iVillage Member
Registered: 09-03-2010
Fri, 09-24-2010 - 1:54pm

Let me start off by saying HUGS because I know how it is.