Just need advice please!!
Hello I am a mom of an awesome little 10 year old little boy! I really could use some advice. I am feeling like I am at a dead end! Our son was diagnosed at the age of 4 with Autism. We always knew that there was something not right from birth. Before we even knew about Autism I made it my mission to figure out what was wrong and spend every hour of ever day to help him and fight for him. We started therapy with him at the age of 3 and also speech therapy. Without a confirmed diagnoses and with advice from family members we went ahead and started him in school, pre-k at the age of 4. He still wasn't even potty trained we just threw some undies on him sent him with a bunch of extra clothes and prayed for the best! About a month after going to school his teacher called me and said that he had formed a very close bond with the teacher assistant and she wasn't able to do anything with any of the other kids for helping him and she needed him to just come for half a days. We agreed pretty much knowing it was coming. Shortly after that the school got him an appointment for a doctor who had diagnosed him with mild Autism but at the time did not diagnose him with any specific type of Autism. We always felt like it didn't matter what specific type of Autism it was as long as he could get the help that he needed, which now I kick myself everyday for that decision and not pursuing the diagnosing further. He has been in special ed now since kindergarten and has been getting the help he needs and has been great until now! The beginning of this year the school brought in some psychologist to reevaluate him. After evaluation these people decided that they didn't feel like he had Autism they felt like he was OCD!! It felt like someone was patting me on the back saying good job getting him to where he is at right now and at the same time punching me in the stomach!! I honestly have no idea where in the world they came up with OCD! It makes me mad for the fact that they have not a clue what I have been through with him to get him in the state that he is at right now. Your talking about a child who didn't say a word till he was 3, never communicated with anyone, never looked at anyone, never played with kids even his own brother and sister, didn't walk till he was 2, didn't potty train till he was 6, couldn't brush his teeth or wear a pair of jeans. They want to tell me that I never got to see my son look me in the eyes and tell me "mom I love you" till he was 5 because of OCD!!
What do I do? I feel like I have been fighting his whole life and I have no more fight in me. Now after years of therapy and teaching to get him to be able to leave a normal life how do I get the right diagnosis? How do I fight this? Because now they tell me because of the OCD diagnosis when he gets to his grade level in school he can no longer be in special ed!! They have been trying for 3 years to intergate him into atleast one regular class and he has never been able to do it.
What do I do??
whilst im not a medical person just a person with a 27 year old autistic daughter i think u need to ask each medical person who u see about the connection betwn autism and ocd
and make sure u get copies of all they say to support your case of autism and dont be fobbed off u are the best advocate for your child
make school produce the evidence that has lead to this conclusion and ask about the qualifications of the person who assessed him and yes print things off to show them
the seizures could just be a temp thing or a body change sso dont worry too much until u get an acurate diagnoses from the scan then u can ask the questions u need to
dont forget to breath and take five mins to remind yourself that u are doing a great job and should be proud of all u have accomplished for your child and yourself
make sure if u need one u have an advocate for u as well someone who has seen the progress the long time it takes to do things and see if u can see any signs that could be ocd traits
take care and be kind
I do not know where you live, but my son was officially diagnosed in a specialty autism testing site in Rochester Medical Center in NY. It took a while to get the appointment. The testing was thorough and worth it. It lasted two half days. Then I got all the services I needed for him.
There may be a specialty center in your area. But not many regular docs or therapists know how to diagnose.
You did a great job being a MOM and still are. People will see that. It's good you had a handle on this early. I did not know until my step son was seven that he had Autism. I had met him when he was five and soon after that he started talking.
I could see how they could get a wrong diagnosis of OCD for my son because he gets on one topic and ruminates over it, talking of nothing else. Unlike the autistic children that rock, he had "very complex" repetitive behaviors and still does. Like removing tires from his toy trucks. Now it is reading. Of course this is good one. My son is 19 now.
Hope this helps. Keep in touch.