As we have traversed this panic-fueled, emotionally-laden path since last January to try and figure out why so many things had taken a turn for the worse with our 11-year-old son, why self-injurious behaviors and some OCD behaviors had taken over his life, why school and home life became so awful for him, our investigations led us from an in-hospital stay for multiple tests, to appointments with specialists and meetings at school, to obsessive postulating theories between my husband and I, to countless discussions with other autism moms, and finally to this particular specialist.
Even the path to see this specialist was fraught with difficulties, as our first appointment that we managed to miraculously get through the diligence of our pediatrician in mid-May got cancelled when the doctor got sick. The follow up appointment came days before our Memorial Day trip to Toronto, and though my husband all-but ordered me to postpone the appointment until after the trip because he couldn’t get off of work to come with me, I was a woman possessed. I had to go.
I took Lil D with my dad (who drove up with my mom at a moment’s notice from Maryland the night before, just so he could drive back to D.C./Maryland to the appointment with me), and went to see the specialist. Many investigative lab tests, research and phone calls later, certain tests came back with red flags. Lil D was put on a course of meds, and we’ve seen some improvement.
And I’m so happy to know, partially, what is wrong, and what we can do about it.
Lil D’s autism has been a challenge, to say the least, for him, for his family, and for the myriad of doctors (medical, biomedical, and otherwise) we’ve consulted with over the years. When the typical biomed lab tests are done, his results come back in the normal range. When we tested for seizures, when we had an MRI, when we looked for dental problems to try and explain why he was beating his head so much, why he seemed to be in pain – everything came back normal.
I’ll let you in on a dirty little secret, and I think some special needs parents will understand: Whenever we have a theory that maybe this is what is medically off or wrong, and we test that theory, I pray that we’ll find something wrong. Of course, I pray for God to do what is best for Lil D. But deep down, there is a part of me that prays to find something wrong.
Because then I’ll know. I’ll know. And then, we can try and treat it.
And when every test comes back clear, my in-laws, my parents, they all send so much thanks to Allah that Lil D is ok. I send thanks too, but I also get upset. If that test is ok, if that lab work comes back normal, then what is it?
Because when I ask, why? And I hear, “its autism,” well them’s fighting words. It’s. Not. Just. Autism.
There’s a lot that is unknown, still, about autism. And behavioral therapy and ABA (applied behavior analysis), and sensory diets, and speech therapy, and assisted communication devices are all part of the road to autism management. But when a parent has a gut instinct that something is wrong, then something is just WRONG. And, there has to be a medical answer. Don’t tell me it’s just autism, or it’s just puberty coming – that’s not the whole picture.
So we traveled our path, and I prayed to find out what was wrong. And that led us this specialist, and some red-flag lab results, and I gave thanks. Thank you, Allah, for finding something for me to fight instead of not knowing what to do for my son. Thank you for teaching me that I need to pray and thank you for knowing that I cannot just pray and do therapies for Lil D — I need to follow a course of medical action.
We’re not out of the woods just yet. Deep down, I know Lil D will never be out of the autism woods. His road is tough, his autism is severe. But we move forward. I wish every parent success in helping their special needs child and figuring out this autism-life balance.
For us, our life is what it is.
And so we head off to our appointment tomorrow. Since it is in the afternoon, we’ve made plans to go to my parent’s home (which is not too far away from where we are going) afterwards, so we can join them to break our fast. That way, we get some family time with my parents. And, when we make the drive home, it’ll be late and hopefully Lil D will sleep in the car, making the trip easier.
It’s Ramadan, the holy month of fasting and worship, when Muslims are taught that our ibadat (worship and prayer) is worth so much more than any other time. An oft-quoted hadith teaches us that God will surely answer the prayers of people who fast, of mothers, and of travelers during their journey.
Tomorrow, I’m hitting the triple whammy. Let us pray.