I started writing this post yesterday after we got home and made many phone calls, but at that point I was too upset from some of the reactions that we got from our appointment and also because I had been up since 4am and had spent the day in a doctors office and going thru testing with a little boy who had also been up since 4am!
I had to laugh that we were in the same building a year later then when this whole journey started & walked right by the office of the first neurologist who told me that the reason Aiden stopped talking, was having seizures & what we now know are ticks was because he had his tinka in his mouth! It took a lot to keep walking when we passed her in the hall and not say to her …. Because of you, he lost a whole year of speech and occupational therapy because you didn’t take the time to listen to what was going on! I didn’t though, I just kept on walking by. I am sure I had a “I told you so” look across my face as she passed though.
We checked into the developmental clinic and were brought back to this huge office with a couch, tons of sensory toys and a room that seemed like it was made for us. Aiden was able to play & do his own thing. They even had little nooks and stuff cut out in the wall for him to climb in and hide in if things got too overwhelming. AMAZING. First we met with the speech therapist, and she was beyond amazing! I loved her, Adam loved her, but most importantly Aiden loved her and responded really well to her. Within the 90 minutes she was in our room she had taught him new signs and he was using his new signs to communicate with her and us. If you know of our frustration with our speech therapist now, you will know why I am really going to be having a talk with her next time she is here. Someone who didn’t know him made more progress in 90 minutes then she has in the past 4 months. I am one unhappy momma! He was able to blow bubbles for the first time yesterday, because she was able to teach him how to put his lips together and blow. It seemed like such a cool thing, but it made it easier for him to also make speech sounds! DUH! So she asked us a lot of questions, observed Aiden & then had a meeting with the pediatric resident who was with us the whole time and the DC’s occupational therapist who has not met him yet and also with the doctor who had not met him yet. They discussed everything we had talked about and also every report from every doctors appointment, every test result, every everything Aiden had in his file. They all came into our room to talk with the three of us & to observe Aiden some more. I will save you the play by play of everything and all of the additional questions we were asked :).
Long conversation short, Aiden has a formal diagnosis of autism spectrum disorder aka autism. We were not surprised at all, his neurologist has already given us that diagnosis but we had to have him formally tested. The doctor asked us how we would feel if we received a diagnosis of autism and of course this was my response “we would be more then fine, we only want to know how to help Aiden, not a label” but Adam made me cry and showed me again how amazing of a dad he is when he responded with “he will still be one of the best things that ever happened to me and nothing could ever change the love I have for my son and how proud I am to call him my son” makes me tear up even now. He was taken back that we were not at all effected or struggling with his diagnosis. He is our son, nothing will ever change that. Period.
We met with one of the top autism specialists in the state and he told me “I am amazed at how much work you have done with him and the progress and changes you have been able to implement on your own“. We have decreased OT down from 3 times a month to once a month, because for the past 6 months I have been doing everything and not needed help or support. Don’t even get me started on speech … Every week all she is doing is playing peek a boo blocks and puzzles. Even though in our evaluation I said we needed to increase the number of signs he knows to increase easier communication with us. I have been the one who does that, not the speech therapist. Not the one who has said to me “do you have a speech degree” when I said things need to change!
When leaving the hospital yesterday, Adam and I both felt like a million pounds had been lifted. We had answers, we knew how to help Aiden. Not to mention having his formal diagnosis opened so many doors for Aiden. We are on the waiting list for ABA therapy, he will now not to have to go through the entire evaluation process for early childhood now (huge relief!) and now the insurance company can’t deny his therapy because he didn’t have a formal diagnosis.
Adam and I both thought that today could not have gone better, but then we got home and I had a phone call from Aiden’s early childhood teacher filled her in on the day and how everything went she was glad we had answers and said “Great! We will get his IEP done very soon and will now be able to get some great goals set for him for this year”. She then told me she had just talked to our birth-3 coordinator someone I already have an issue with because she always wants to request Aiden’s medical records because she doesn’t think or agree with what is going on – like she doesn’t think he has food allergies or such severe environmental allergies, but even more then that she has never thought he had autism. Her reason … “He is making too much progress too quickly“. No joke! I wanted to scream when she said that! Then when I told her how yesterday went her response was “I am shocked that they would diagnose him with autism. I can’t believe it. Are you sure they got a clear picture of Aiden and who he is“. The was the final straw. I am done with birth-3. She is a social worker. A form filler outer. She is not one of the top autism specialist in the state. She is not his pediatric neurologist who also have him an autism diagnosis. She is not his primary pediatrician who also have him a diagnosis of autism. UGH!!
At the end of the day he is still my sweet baby boy, we just now have a final answer and many opportunities ahead of us. I couldn’t be more excited to see what the future has in store for my baby boy.