There have been a few days in my life that have changed my world.
The day I chose my university.
The day I met Lucas.
The day I got married.
The day I miscarried my first pregnancy.
The day I had Mathias.
The day that I first heard the words “Smith Lemli Opitz Syndrome” and wrote them down on a junk piece of paper, not thinking anything of it because the neurologists told me they had never met any children with it before and the chances that Mathias had it were 1 in 60,000.
The day that Mathias got a g-tube.
The day that these words were uttered: “your son is on the Autism spectrum.”
I’ve been meaning to write this post for quite some time, but I have a hard time expressing the feelings I had in this moment, which was already 9 months ago.
Our stay at the National Institute of Health was…traumatic. It was hard, for all three of us (Livia was a baby and was blissfully unaware of anything going on), for different reasons. This was the first time Lucas really experienced firsthand what Mathias has to go through. Mathias was subjected to multiple tests, which included a skin graft and a blood draw that took several days because they aren’t used to baby veins, and our stay concluded with his g-tube exploding the ONE time we didn’t have a spare button because our medical supply company had a mix-up and couldn’t get the spare to us until the day after we left for Maryland. It was awful.
For me, it was difficult because of the ASD (Autism Spectrum Disorder) diagnosis. Honestly. It was just ANOTHER thing that Mathias had to try to overcome, another thing making it more difficult for me to teach him, another thing that made me feel like my son could/would never have a “normal” life. Nothing changed about Mathias – but in the moment he received the diagnosis, my last hopes crumbled. It was another thing that proved just how much his genetic disorder controlled him, another thing that reminded me that even if he is on the “mild” end of the SLOS spectrum, that he does not function the way that I do. I wanted, desperately, for Mathias to be able to be mainstreamed in school. To not need a lot of therapy, to not need too much special ed. I knew that it was unlikely and that the odds were stacked against us, but I still had hope that maybe, maybe he could just be “normal” enough to get by.
As a mother, there are things that make you suffer in a depth that you can’t truly comprehend until you are in that position. I know, from my own experiences in school, that kids are mean. Kids are hurtful. And kids that are atypical – kids that are medically complex, have genetic disorders or are on the autism spectrum – have it harder than anyone else. So not only was I worried about Mathias from an education perspective, but from a social one as well. The thought of someone being mean to my baby, and him not understanding why, broke my heart. I didn’t want – I still don’t want – him to ever feel that he is less than anyone else. And I know that part of his suffering in life is going to be just this. He is not like everyone else. All I can do is try to teach him that that’s okay, and that he is perfect and loved by his family and God just the way he is.
However, the silver lining to an ASD diagnosis is therapy. As terrible as the government and health care systems can be, they understand the word “autism” as “this child needs your full support.” Do you know what Smith Lemli Opitz Syndrome means to them? Nothing. It’s gibberish. No one knows anything about it and that means things take forever to happen. But say the word “autism” and things start moving.
The biggest help for Mathias, they told me at NIH, would be ABA therapy. ABA (Applied Behavior Analysis) therapy is a “learning theory which utilizes a team approach to provide services adapted to meet the specific needs of a child and their family.” What this means is that these therapists meet your child, evaluate their strengths and weaknesses, and make goals to help improve different areas of “function,” i.e communication, social engagement + play skills, self-care skills (such as eating, potty training, dressing themselves) and their interfering behaviors (how they respond inappropriately in a situation, such as whining, face-grabbing or mouthing).
ABA therapists come to your home and work with your child in their home setting, and teach you ways to work on things with your child when the therapists aren’t around. It’s an intensive program – each session consists of a three hour block, and the minimum is usually 12 hours per week. We are starting with 9 hours because our ABA company does not have enough staff until the New Year, and will work our way up to 20 hours. This is in addition to the other therapies Mathias receives on a weekly basis: speech therapy (three hours), feeding therapy (one hour), occupational therapy (two hours) and art therapy (one hour). Currently we are already at sixteen hours of therapy – we will probably get up to twenty five by February. But this is what Mathias needs to be pushed to learn and adapt and communicate, and we wouldn’t receive this without an ASD diagnosis.