When you have a young child/ren, you are constantly worried about them. You wonder if they are delayed, if they are sick, if something you are doing will scar them for life. When you become a parent you never stop worrying. On the other side, you are fiercely protective of your child, if anyone actually suggests that something may be “off” about your child, you want to attack them- “what do they know, “what a jerk,” “how dare they…” It is hard to face the fact that something may actually be going on with your child that is more than you can help them with.
That is how I felt anyway, I knew in my mind that my son may be “different,” but I had a really hard time dealing with the idea that he may have ASD. It is such a ridiculous feeling, because you can’t actually help your child until you know what you are dealing with. I held off on really getting him tested until he was 3 years old. I should have gotten him tested when I started to have the nagging feelings that something was in fact “off” with his development around 18 months. Although, Tigger’s pediatrician often told me that she was not concerned and that he was just developing at his own pace, I now feel like I should have still gotten him tested anyway. Now when parents start to tell me that they are concerned about their child’s development, I always tell them to just get their child tested. That is the only way that you will know for sure and once you know, then you can get started with whatever it is that they need to help them.
When the psychologist diagnosed Tigger with ASD, Applied Behavior Analysis (ABA) therapy was the first thing she recommended. I immediately said “I don’t think that will work for my son.” I mistakenly thought that ABA therapy was only for children who were violent or had some major “bad behavior.” My son was just this sweet little guy who needed to learn how to interact with others- he was not violent, he did not tear our house apart- I had all these ignorant ideas about the therapy. Instead I had Tigger assessed for Occupational Therapy and Speech Therapy, which ended in him getting merely six months of OT and not qualifying for Speech. I will side step here and say that this experience floored me. The doctor is telling me my son has a disorder, but he isn’t actually qualifying for treatment. That does not make any sense! Anyway, then I started looking into private businesses that offered social skill training and other social therapies- all of which would be very expensive and not covered by insurance. It was about four whole months before someone explained to me that eye-contact is a “behavior,” reciprocal interaction is a behavior, everything my son needed to learn was a behavior that could be targeted, PLUS ABA therapy was the most widely insurance covered treatment. As I have stated before, Tigger gets 15 hours a week of one on one therapy and the therapist works in his classroom, this means, he is also constantly surrounded by social experts (his typically developing classmates), which I think has strongly supported his progress. They spend three hours every morning in his traditional preschool classroom and work with him to meet very specific goals, including eye contact, turn taking (reciprocal play), social language, and many other goals and once a week they work with him at our home and in the public. I want to sing from the top of high buildings about these awesome ABA therapists. I would also write some verses to that song about the great teachers and administrators in Tigger’s preschool that work with the therapist to make it a best situation, not only for my child, but for all the children in his classroom. As you have read from my earlier posts, not all schools are willing to allow the therapist in the school or work with my child. Of course, it is not always seamless, and we are constantly fine-tuning the relationships as the teachers and therapists figure out how to handle various situations, but I am so thankful that they are all willing to work together in supporting my son progress.
Tigger has had ABA therapy for six months and his progress has been absolutely mind-blowing! Before he started therapy he was afraid to go on play structures at parks when other children were there. Now, just six months later, he walks up to the random children at the park and says “What is your name?” waits for them to answer, repeats their name, and then says “My name is (Tigger)” and sometimes he even says “Do you want to play.” It is still difficult for him to know exactly what to do in reciprocal play, but I can really see him trying. The ironic thing about this new social skill is that most typically developing three-five year olds are not very kind when a new little boy comes up and starts talking to them. They often do not answer him or give him a dirty look. I know that that response is so typical for that age, but it has to be so confusing for Tigger. He will look at me and say “Why don’t they say their name? What is their name?” We have gotten into quite a few awkward situations where Tigger is asking people their names and how old they are, and if they do not answer, he does not give up. He will start yelling at them “Say your name! What is your name?” I have to explain to him that sometimes people are shy and they don’t feel like sharing their name. We were on vacation and while my son and husband were in a pool, Tigger started to ask a woman (she looked to be in her twenties) what her name was and how old she was, and she would not look at him or answer him. He started following her around and yelling “HOW OLD ARE YOU?!” My husband (a little embarrassed) tried to quietly explain that sometimes it is not polite to ask people how old they are. My son did not understand that concept in any way.
As you know, Tigger is terrified of bathroom fans and has issues with going to the bathroom anywhere but our home. I’ve talked about the panic he had at the public school with the bathroom and that has caused him to over-hold his urine for up to 31 hours. Over the six month period of ABA therapy, I am ecstatic to say that he is now sitting on the toilet at school (in a bathroom with no fan- but still a huge deal), he is not voiding at school yet, but that will come. This is such a huge relief, it is something that I didn’t think would happen for a year or more.
At the beginning of the school year, my son was a very quiet boy, who mostly observed and did his own thing. He did not stand up for himself if someone took something from him; he was disconnected from what was going on around him. This behavior was probably quite nice for the teachers. Everyone would talk about how sweet and cute he was, but now with his amazing progress comes typical four year old behaviors (yay!). If you have had a four year old in your life, you know that these typical behaviors are not always desirable behaviors. Now he is testing the boundaries. At clean up time instead of cleaning up he may protest or run away- something that I’m sure he has seen other children do (I know when I was teaching, each day I was dealing with one child or another deciding that cleaning up wasn’t for them). When he sees a child do something that makes another child cry, he might go and do the same thing to that child to see their reaction. Although these are bad choices, they are typical four-year-old bad choices and I am so happy he is making them and learning from them, just like every other child in his class.
We still have a lot of work to do, but I am so excited for it. I feel so lucky to have this incredible team behind my son, and all I want to do is stress the importance of early intervention. So, if you are concerned about your child about anything. Instead of worrying about it and stressing about it, take the leap- get them tested, get educated, and get on with it either way, whether in fact, there is a real issue or not. The cliche is so right- knowledge is power and only when you know what you are dealing with, will you be able to truly help your child or yourself.
