Thursday, May 26, 2016

My Special Needs Kiddo: Why? Because You're a Hero (Part 3)

P's story is being told in a series. This is the third installment in the series. If you missed the first installment of the series, please click here. If you missed the second installment, please click here.

When my son was born, my husband and I were tickled that our little bundle of joy had suckled the back of his left hand so much that he had given himself a chapped hickey.

When I would nurse him, he would feed, but would want to pacify for extended periods of time, leaving me no time to produce more milk. I resorted to joining my local Le Leche League for support and advice. Through that organization, I was pointed toward taking the supplement Fenugreek, which helps to increase milk production. (The Fenugreek did a wonderful job of making me smell like maple syrup and pancakes, so I started wearing Vanilla Musk in sarcastic way. It only made sense.) I was never quite able to produce the milk my baby needed, even after joining a support group, taking a supplement, and using a breast pump. 

Contrary to the advice given by some, I made my first big decision as a mother one exhausting morning and warmed up a bottle of formula that came home with us when I was discharged from the hospital. He fed, and he fed well, which led to his first extended nap. We learned very quickly that  helping him sleep would be a constant challenge. It would take hours to get him to sleep by lightly patting his butt or walking him endlessly in his stroller, only to have him wake-up an hour later. This led to his pediatrician recommending Melatonin to help him rest.

As he grew, I took mental notes of particular things - like the fact that his speech was behind, which led to a surgery to remove his adenoid and put tubes into his ears thinking ear infections were the issue. This lessened his ear infections, which, at the time, were constant, but his speech was still always behind a bit. We also noticed he was sensitive to loud sounds, was upset quite often, and had difficulty making friends. He also learned to walk later than most children. At the suggestion of the director of the daycare he attended, we had someone come in and observe him, which resulted in them working with him on his weaknesses. There was significant improvement, but there was still a lot of concern. When we attended his preschool graduation, he seemed awkward and didn't take part much in the singing and dancing of the play he was in.

Before he started kindergarten, we had him professionally tested. I brought him with a friend for what would be an all-day evaluation with a pediatric psychologist. At the end of the day, I sat with only my child and the examiner and was explained that the diagnosis was very much cut and dry. In layman's terms, my son was on the mild end of the Autism spectrum. If the the term Asberger's were still in use medically, he would fall into that category; however, the DSMV had been re-editioned and did not include Asberger's as a diagnosis. My son also has ADHD and anxiety. She then told me he has difficulty with sensory issues that would require occupational therapy. The good news was, he was exceptionally bright.

I was numb, and, at the same time, felt overwhelmed. I did my best to accept it all and hold a brave face with my little boy sitting just feet from me playing in a corner. I called his dad and, when he arrived to get us, explained it all to him to the best of my ability. Over the years, my little guy has seen therapists and taken medication (which helps). We were against jumping into medication too quickly as he was only five. We tried special diets, different forms of discipline, chamomile tea, and any other options we could find. In the end, he ended up needing the medication, which has best served his needs.

It's admittedly been a very long road, but I admire my little man for never giving up and having an unwavering determination. There are times that he struggles, as any of us do, but his dad and I do our best to help him along the way. He is able so he does attend regular classes, although he has a 504 Plan that I had put in place, mostly so he could carry his taggy ring, but also for other supports to help along with that. I prefer to shield him as little as possible and give him a typical childhood because he will have to adapt to the world. The world will never quite bend to him and the same expectations legally and socially apply to us all. He's no exception. He sees his therapist and psychiatrist regularly and takes medication for the ADHD symptoms he has.

For the longest time, I blamed myself that I had in some way caused him this affliction. Maybe it was the depression or the Prozac. Maybe it was the medication I was was on when I took the pregnancy test. Was there anything I could have done more or better? Now that I am caring for someone who lives with Autism, I've become hyper-aware of the "awareness ads" on television and radio more so than before. Every time I hear of an article on what may cause autism, I take interest. 

But here's the the conclusion I'm slowly drawing. There's an article every week that says, if you don't eat this or do that more during pregnancy, then you may have contributed to the probability of having a child with autism. There have been so many articles and studies that it leads me to believe that the only way to not have a child with autism is to, well…not have a child. I've learned to stop playing the blame game in which I always seem to be the loser, and, I'll admit, some days I struggle with that. But when I look at my son and see the beautiful world into which he only allows a precious few people, behind his locked door he keeps to his creative world, I wouldn't change a single thing. And, in those moments, I realize he is exactly as he is meant to be or he would have been different, and I'm okay with that.

If you care for a child that requires special considerations, then consider this…you're as much your child's hero as they are yours. You will always be your child's greatest advocate. The days are long, yes, but the love is so much more immense than that which you may find more easily. My silver lining outlines a primary colored rainbow. And every mother on Earth that feels like they're fucking it all up really is one of the best because you can tell her standards are high for herself as a parent. Even so, we all fuck up something. Everybody gets one pass. Mine was spraying Febreeze on my son's butt before I passed him to a babysitter when I was in a rush. Through all this, I was horribly depressed because I made the poor decision to stop all medications in order to nurse. Over time, and with a new psychiatrist and therapist, I was able to regain myself, but I fought hard for my son to be sure he got what he needed in the interest of his development. I'm better these days, and I admit, it took time.

Never hesitate to reach out. Seek resources. They're everywhere. Support is vital and forgiveness of oneself for what you aren't at fault for is far greater. You were chosen for this child for a reason. Hugs to you all because we could all use one sometimes.

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