"They" don't know nuthin' about anything (or Don't argue with me when it comes to my kids)

I'll get down to brass tacks. We now know that Thomas has a form of speech apraxia. This is where everything makes sense in the brain, but the mouth cannot articulate it. It's referred to as a motor planning problem. Speech is actually a very complicated process that our brain/body carries out.

This came after months and months of waiting, incredible amounts of stress, more waiting, some "you should do this", blah blah blah. It all started when I took him to ChildFind in June 2008. Suggested by his primary care, it is a free screening that the school district does with their professionals (speech, OT, etc.) I figured this was a great place to start as we needed to know why his speech was behind. They rushed through their screening and then told me I wouldn't have any results until September. Now around his 3rd birthday (12/07) is when we began to realize his speech wasn't where it should be, not even close. So this meant even more waiting. September comes and they tell me essentially they have no idea why his speech is delayed. They also made observations from their rushed screening and alluded to me that he was possibly autistic. They wanted to place him in a developmental preschool. So he started going there and I waited to see if being there would help his speech. From Sept to Dec, he barely made any progress. I was frustrated and angry and I felt like I was in the dark with a dying flashlight. I didn't know where to turn or who to ask questions. A storm hit before winter break and he had to miss a week of school. They had told me about the ONE sign they had taught him and a light bulb when off. I thought maybe signing would help. He would get so frustrated because he couldn't communicate his wants and needs to us. I desperately needed something to help him. So for the next two weeks I taught myself and him signs, roughly two a days. He ate it up, he was like a little sponge. All of a sudden, he was saying words he had never said before and his frustration all but disappeared.

January comes and he's supposed to go back. I was feeling torn. Part of me wanted him to have that experience, yet I knew that he wasn't improving while there. I decided to keep him home and continue with the sign language. I tried taking him back in April, but after a week he just didn't want to go anymore. I mean REALLY didn't want to go. So we just continued what we were doing at home. They said "See you next year.." I said "We'll see..."
Meanwhile we were on a waiting list for a developmental pediatrician at Mary Bridge. We got on the list about Jan 09, and finally got word we had an appointment August 09. Now this whole time I would talk to others and field questions about his speech. I got tired of having to tell people he wasn't autistic. People are so quick to assume based off a few observations, and have this need to label children. I would keep my cool while face to face with these people, but privately I would melt into a puddle of tears. Some nights I would lie awake in bed wondering if I was responsible for his speech delay. Did I do something wrong or maybe I had made the wrong choices and what if he never talked right and on and on. I just took it down to one day at a time. I kept a journal to track his speech improvements with me and he made many leaps and bounds, all thanks to one on one and sign language. (side note* they say children with motor planning difficulties have trouble signing...they haven't met Thomas have they :P )

So now its August 09. We get into Mary Bridge and see the developmental ped. I bring my journal and all other documentation to add to what I already sent in the required packet of paper to get this appointment. For the next two hours, I basically recount Thomas' entire life to this point. (Normal pregnancy-check, normal birth-check, every developmental milestone met (except speech) CHECK) He listens to everything we tell him all while observing Thomas. I tell him about the ChildFind and he agrees with my assessment that they thought he was autistic (but legally they can't just come out and say it). I told him I don't like people talking in code or alluding to anything, I just want the facts. He says to me "I have to tell people everyday that something is wrong with their child. I have to tell them if their child is autistic. Thomas is NOT autistic." He officially diagnosed him with an isolated speech delay and gave us a referral for a speech therapist. I had feelings I could not describe welling up inside me. We left his office and went downstairs for some bloodwork. He wanted to test him for Fragile X (which is a genetic disorder, retardation). He didn't think he had it, but wanted the test to prove it was ruled out. I went into the bathroom with Thomas and began to cry. For once they were tears of joy. I just grabbed Thomas and hugged him tightly (stopping when he said OW...lol) and held onto that moment. I just kept saying "I knew it, I KNEW it..."

So now it's Sept 09. The school calls planning for Thomas to come back. They changed his teacher and I end up talking to her for over an hour explaining the last year of events. I agree to come in and update his IEP (individualized education plan) since it had to be done by 9/11. Otherwise they have to start ALL OVER. So we go in and armed with all my knowledge of the last year...I outline exactly what I expect of the school. I am very aware of what their limitations and what they can provide. It was a great meeting and I left feeling much better about Thomas attending school. He has changed so much in the last year and preschool is going to help him in ways I cannot at home.

Before he starts school he meets the speech therapist for the first time. He does great and is able to display his speech for her. She diagnoses him and will be seeing him once a week, in addition to the speech therapy he'll get at school (which by the way, I made sure he got the max). He communicates a lot, he always has. The difference when he talks in a stream he is unintelligible. Words are in there, you just have to listen closely.

So he started school and he LOVES it! I think it has a lot to do with the new teacher. I also had her come over for a home visit so he was more familiar with her before school started. Second day of school he drops my hand takes hers and looks at me and says "BYE!!" This has been the case every day since. He has made the transition from Mom to school all on his own. I tell you, it's been a hell of a ride at times. I already knew I would do anything for my kids, that was a given. But this experience with Thomas made me realize I would move the Earth if I had to. I had to go through mental HELL to get where I am today, but I am stronger and I can pass that on to my kids to make them stronger.

So the next person that says autistic to me...gets a verbal fist to the face. ;)