Thursday, September 29, 2016

Autism Diagnosis

It has been a little over two months since I have sat down to blog. I told myself when the twins started preschool I would catch up. They started the first week of September and I am finally taking the time to blog. What has been going on in the past couple of months... so much! College trips, preschool begins, another one in high school, one in middle, lots of soccer, etc.. I plan on using this weekend to catch up on those blog posts but wanted to start back to the blog with more of a personal/family post. This has to do with the entire family but mainly our sweet Matthew.

Our story..
Matthew has always been delayed in his speech. We started speech therapy at 2 1/2. After 6 months of speech every week the therapist thought he was doing great. She recommend us putting him a special class at a local elementary school to help with his socialization. It was tough at first but he adjusted and enjoyed his special time out. Towards the end of the class the teacher suggested I go back to the county for more testing. You know when you have that feeling that something is just not right, I had it for a while now I just needed that little push.
This begins the process of all his testing. We started with having to go to preschool services so they could watch him for two hours. I sat there watching my little Matthew on the other side of the glass. At times I had tears in my eyes as I saw how far behind he was. Other times I wanted to bang on the glass and tell her not to mark him off for that, he knows exactly what he is doing, he is just stubborn! Thankfully he had the sweetest lady to start us off with the testing. She listened to me when I told her my diagnosis was 5th Child Stubborn Twin Syndrome. She said she had never heard of it but would look into it  for me :)
Within a few weeks we heard back that the county would now like to evaluate him. Seriously we had to go to an evaluation to see if we could be evaluated for the next steps. 
It was off to our first official visit to meet our case worker and the team that would be evaluating him over the next 3 months. They all spent sometime with him while I filled out the paperwork. After the visit they all decided that they will now begin the formal process.
Next we were off to the audiologist to make sure it was not his ears. (He failed that test during the initial evaluation). I told them I was not worried, this kid hears everything. As soon as my coffee pot is on he is down the stairs. Sure enough after an hour of testing they gave him the all clear.
Next visit-the psychologist. We spent 2 hours with another sweet lady. She was also a mother and a grandmother. It was nice to have someone who had a lot of experience! Towards the end of the visit she expressed with me her concerns and said she would be at the next visit with Matthew to go over them with the other case workers.
Last visit with Matthew in attendance. Another long visit. More people watching Matthew. Lots of writing on clipboards. Lots of hmmm, ohhh, ok well lets try this.....not a fun process at all. It is so tough sitting there watching your child being evaluated over and over again.
6 weeks later we had our meeting to get the results. We received a 12 page report with their findings then went in to sit down and go over all of it. The psychologist had already spoken to us about the possibility of autism. I went in thinking high functioning, mild, 5th child twin stubbornness. It was hard to read the words on the paper when it says Matthew-moderate autism or level 2. I look at this sweet boy of mine, it is still just a simple speech delay. It is a twin thing. It is because he is a boy. It is because his sister does all the talking for him. It is....autism. When you first look at Matthew you would not know it. He is very social. He has great eye contact. He has no problem going up to give someone a high five, fist bump, or hug. When we took the twins to their 4 year old check up and told the doctor that he was being tested for autism he was surprised. 45 minutes later he said he could see why and he would be there for the support we need.
Their recommendation. Initially at the appointment they wanted to pull him from preschool and place him in a special school. After speaking with all 4 case workers about my concerns and wishes we decided to keep him in preschool with Abby. He is actually walking into the school now without having to be pulled off my leg. We know the therapist who works at that preschool and she has requested to take Matthews case for us.
How did we know...Matthew has always had little issues. I would tell the therapists I have 5 kids something is just not right. He is very set in his way. He does not handle change well. His speech is still way behind. He is very repetitive in what he says. He has a good vocabulary but a lot of what he says is what he has heard us say. He is very stubborn, more then your strong-willed child. We had to stop going to certain places. Chick-fil-a playgrounds were too much for him to handle. We started doing the drive thru and then would run over to Krispy Kreme as his treat. We turned down invitations to friends houses because we knew it would be hard with him and we did not want to mess up his schedule.  We rarely went to events as a family. If the boys have something one of us will stay home with the twins. We don't want to take away from the boys having a good time. We want to keep things as normal as possible for them.
Speaking of the boys...they are amazing!! They are so good with him and take turns helping out. They have been so patient when we are in the car waiting for a meltdown to end. They are also very helpful in helping me get him buckled when he gets his superpreschool(my new word) strength and I can not get him buckled in. They will listen to him repeat things over and over again. The other day on the way home from church Matthew mentioned 54 times No More Church. That is always fun to hear.
Now what...we hope to begin therapy this week or next. He will be in therapy three times a week while he is in preschool. He will be able to work with 2 different therapist. My goal is to keep him with Abby. The case worker believes we will be able to move him from moderate to mild with therapy. He is a good learner, it is more the social and communication part we will focus on.
How are we.. it was a tough day last week listening to everything. At that point only a few family members and friends knew what testing we were doing.  It is hard when you ask your child basic questions and they can't answer (like a normal 4 year old). He can not tell me what he did in preschool. He does not understand the concept of bringing a special toy to school to show his classmates. Abby usually picks it for him then will stand with him to tell the class. His classmates can not understand him, he speaks clearly with us but at times he is back to babble. He has not spoken many words to his teachers and he has been there 10 days. Those are the moments that make this hard. Then we have the other moments--Matthew does have his passion. Soccer, more specific the Champions League! This kid knows all the teams. He likes to read his European Soccer Book before bed where he tells me what each jersey is. He will watch a game and mimic the players moves. He is in love with soccer. Eric is still trying to teach him he can not have Liverpool and Man U as his favorite teams, he must choose one.

Then there is his dancing. If you are ever standing around us you will notice my kid breaks out into his dancing. He loves to dance to the music in his head or the music around. The other day at church we were in fellowship hall for donut Sunday and he was dancing away like he was the only kid in the room. High School soccer season is the best for this kid--Music while they warm up, soccer, music at halftime, then more soccer! Yes! This is his happy place. This is where he has the biggest smile. This is what makes the tough moments ok, how can in not be when you see this smile!!!

Since his diagnosis I have had some great advice on things that will help. We are trying a new diet. He will have his therapy. I have also had random people ask are you sure? What if they are wrong? I don't think he has autism. He has eye contact so he can't be autistic? My kid was like that and he is just fine, it is normal. He is a late developer. He will grow out of it.  Oh boy, as if this is not overwhelming enough. I just smile and say we have had 6 social workers, therapists, or doctors...so I think we are going to go with their diagnosis. No his appearance on the outside will not show your classic case for extreme autism. Because he is not extreme. He is on the spectrum, it is a large spectrum. For now we are going to work with him and his therapist, we will get him reevaluated in 2 years. For now we are going to enjoy this sweet smile and sweet boy! My Matthew!