Getting a Diagnosis, Then What?

I started by reading a little bit about autism, and I realized there is a LOT of information out there about treatments, theories about what causes it, diets that are supposed to help. The problem was that a lot of the information contradicted itself, so I really had no idea what to do. I read that it's very difficult to get a child diagnosed because doctors don't want to "label" young children. I finally decided to contact the speech evaluator that came out to see us when he was 14 months old. I told her that there had not been any improvement in his language; but that I suspected he might have autism (it was really difficult to say that out loud.). Fortunately, for us, she was the right person to call. She set up a referral for us to see a psychologist and have Braden evaluated. She said we would also have to have his hearing tested to be sure that his speech issues weren't hearing related, because he covered his ears a lot. We set up the hearing test first and because he couldn't talk, we had to take him to the hospital for a test to be done while he was sedated. I was terrified of him going under anesthesia. We took him for the test and they told us his hearing was fine. I already knew his hearing was more than fine because he could hear me putting on a movie from the other side of the house and he would come running; he just wouldn't answer to his name and ignored just about everything we said to him. With the hearing test out of the way, it was time to meet with the psychologist. Jeremy and I were both scared that they would tell us he had autism (even though we knew he did, it's still hard to get that diagnosis). We were equally scared that they would say that he didn't have autism but something else was wrong. We took him to the center and met with two psychologists and they basically asked us a billion questions about Braden while they observed him playing. At the end of the meeting, the doctor turned to us and said "he definitely has autism".

Your Child has Autism. Now What?

So now we knew. We just didn't know what to do next. What was the best treatment for him? We were told that every child with autism is different and no two kids would have the same symptoms, which makes treating autism pretty difficult. The psychologist recommended we apply for help from the state department of disabilities. If we qualified, we would get quite a bit of help that would be paid for by the state (We had no idea at the time what a blessing that was, because they don't have those programs everywhere.). We were told that he qualified for the early intervention program and he could get started on that right away. What a relief! To know we could be doing something for him! They said that we would qualify for speech therapy in or out of the home and they would assign an "early interventionist" to come to our home once a week to work with Braden on learning how to talk, play with toys appropriately and overall developmental goals. I thought "Great! Let's get started!" Then I found out that there was a waiting list for speech therapists and we would just have to wait. Finding a speech therapist was going to be our most difficult task. So, as I started telling people about Braden's condition, boy did I get a LOT of advice! People told me to put him on a special diet that eliminates gluten and dairy proteins from the diet. People kept telling me to advocate for Braden and be the "squeaky wheel". People told me that it was because we vaccinated him that he was like this. I didn't believe that for a second. I heard a lot about the theory that the MMR vaccination that babies get when they are 18 months old causes autism. First of all, now that I knew what the signs were, I realized that Braden was showing signs of autism from as early as 5 months old; long before getting those vaccinations—I just didn't believe that line. The more I learned about autism, the more I actually got frustrated every time I heard that theory and almost every time I would tell someone that Braden had autism, their next question would be about vaccinations. It just didn't fit with the current studies that were out. There was basically only one study done that showed the vaccinations were linked to autism. Now, it comes out that the doctor who did that study, completely falsified his research! What kind of idiot would do that!? There are families out there now who won't vaccinate their kids because of this man's lies. I can understand why the parents of children with autism need something to blame because your life gets turned upside down and you just want to know WHY?! The truth is, they haven't found the cause yet. They may NEVER find it. God sent this child to your home (just the way they are) for a reason, probably a lot of reasons. Those innocent little spirits are perfect just the way they are, even if their body isn't perfect. You as a parent are meant to learn from them—IT DOES NOT MATTER WHY—you just have to take the diagnosis and worry more about how to help your child reach their optimum potential in this lifetime, because in the next, you will get to see them in their gloriously perfect state. On those days that you're frustrated (there will be a lot of them) and you just don't understand, you have to remember that.

After many frustrating experiences with flaky speech therapists, I thought I might have better luck just taking him to a center for therapy than having someone come to the house. We ended up finding him an occupational therapist and a speech therapist through the same center. The occupational therapist actually didn't even know much about autism, so it was a bit frustrating working with someone who didn’t really understand Braden at all. Eventually she just gave up and transferred us to a different occupational therapist that was certified in sensory disorders. What a difference it made! She was so great and Braden's sessions became so much more effective! So, we had someone coming to the house once a week, and Braden going to speech and occupational therapy once a week—It was a start.

I continued doing my research and found that ABA (Applied Behavioral Analysis) had shown the most promising results across the board for autism treatment. The problem? ABA is extremely expensive and if you do have the money for it, to get the most out of it, it has to be at least 30 hours a week. We didn't have the money for that, so we kept up with what we had. It took a while, but Braden seemed to be making some progress. His first word was "ball". It was amazing to me how much work went into getting that one word out of him. It was so much work just to teach him ONE thing. I thought, "will it be this hard forever?"

We tried several different ways of getting Braden to communicate his needs because many of his tantrums were because he was frustrated with not being able to tell us what he wanted. We started using pictures of some of his favorite things; Sippy cup, toys, movies, food, and we threw in diapers so he could tell us if he needed to be changed. We taught him to grab the picture of what he wanted and things seemed to get better for him and for us. It was so nice to feel like we were moving forward, even though it was at a snail's pace. I would look at other kids his age and there was such an obvious difference in the developmental levels, it just made me sad sometimes. I wondered if he would ever learn to really talk, or be like other kids his age.

Braden was about 2 years old and we decided to apply for a program called "long term care" through the department of disabilities. It was a long process and involved a lot of paperwork, more evaluations and if he qualified, we would receive even more services, like habilitation and respite care. There was also a program called the "hab-m hab-b" program that would allow us to do some ABA therapy with someone who had a bachelor's or master's degree in ABA. I prayed so hard that he would qualify because I was told by many people that getting long term care was a long shot for someone Braden's age. Amazingly, he qualified! We immediately started looking for a habilitator to come to the home and work with Braden. What is a habilitator you ask? These people are supposed to help him learn how to take care of himself and do day to day things and work on any goals we had for him. We qualified for up to 30 hours a week. I started interviewing people and hired two different girls to come. One of them ended up being a disaster and we let her go after two weeks because Braden just hated her! I got sick of hearing him cry for the entire three hours she was there each day. The other girl was so great with him we decided to just increase her time with him and only have the one girl coming. It was one of the BEST decisions I have ever made! She was wonderful with him and I can't tell you how much I miss having her help.

We began our Hab-m program with an organization called SARRC (Southwest Autism Research and Resource Center). I had taken a couple of free classes with them when we first found out that Braden was autistic, and they were awesome! Our behavioral analyst came out to the house once or twice a week to work with me and to work with our habilitator and teach us how to work with Braden. This was exactly what I was looking for! I wanted someone who would teach ME so I could help Braden myself when these services might not be available to us (which now they aren't). She was amazing and we started seeing huge improvements in Braden's language. The basic concept that we used to get Braden to talk was to figure out what he wanted, and then get control of whatever it was and model the word for him and wait for him to say it before he could get what he wanted. There were many tantrums at first because he was used to us just giving things to him. But he learned quickly that we weren't going to give in so he actually started using words!! It was amazing to see him learning to talk! So we learned a whole new way to interact with Braden. It was so great because I had never been able to figure out how to get him to interact with me. As a mother that hurt the most; feeling like my own son didn't want to be with me or play with me. Even though I understood in my mind that his mind was in its own world (one that didn't really include me) it still stung my heart every time he I would try to play with him and he would either get upset or walk away from me. There were (and still are) times like that for me, because a mother's heart never changes, no matter what I learn. I love my sweet Braden, and I'm grateful he was sent to us; I'm even more grateful for the blessings of services and the "long shots" that we qualified for, because without them, I have no doubt that Braden wouldn't be as high functioning as he is today.     

 

 

This is one of my all-time favorite pictures of Braden (taken by Jeremy). You can see straight through those innocent eyes and right to his sweet soul.