The stages of grief

I’ve been in the acceptance phase of Little Bear’s diagnosis for a long time now. I spent weeks crying, blasting my self-soothing music, crying, “Why my son? Why my baby?” at absolutely no one. I mourned his differences as if I had lost a child. I did lose a child. But in losing the child I imagined he was, I began to meet, love, and adore the child he is.

This morning we started our homeschool sessions. I think everything went well except for table time. We definitely need to work on table time. His ABA therapist came at ten and he did a wonderful job reading books with her and taking breaks before transitioning back to his assigned activities. She gave me ideas on how to organize his day and get him to do what he needed to do. When she left, I felt very positive about his future. He knew at least two words on every page of the Dr. Seuss ABC book, he named my sister, my mother, and my mother in law and he asked for food every time he wanted it. To me, it was a very successful day.

I filled out his transition papers for preschool. I requested a special needs school with complete knowledge and acceptance that this is what my son needs. It was a good day.

My husband has also gone through stages, but today was not a good day for him. Little Bear was rolling his head back, not answering to his name, and being generally disinterested in anything my husband said or did with him. On Mondays and Wednesdays I teach at night, so I wasn’t there to help get him back on track or figure out why he was derailed at dinner/bedtime.

I came home late from work. I had papers to grade and tests to write and I always work more efficiently from my office or a classroom compared to my home. I came in and my husband was on the couch, classical music playing, feeling very down. He had been reading about ASD and was full of questions, the biggest one being: Why our son? Why our family?

He broke my heart more than once during the conversation, although I didn’t tell him. The first time was when he said he didn’t want to have any more children because of the risk that another one could have ASD. I very much want a third child and Little Bear isn’t confirmed ASD yet. He has ASD-like symptoms, but his neurologist is heavily leaning towards delayed myelination. Since delayed myelination isn’t genetic, I see no reason not to have a third child. I want a third child. I very much want to have a third child in the next year.

As he kept saying what pre-occupies him and what scares him and what his fears about the future were, I tried to remind him repeatedly that our little bear is not a lost cause. Looking at where he should be cognitively, he hits every single milestone except following two-step directions. When looking at what a 3 year old does cognitively, he does everything except turning a doorknob and playing make believe. His delays are purely linguistic and social in nature. I have no doubt Little Bear will eventually mainstream once his language skills take off. How easy school will be for him is another question. My husband doesn’t seem to share those feelings. He fears Little Bear will be in a home and need constant care for life. I just don’t see that happening. His language was at an 11 month level 6 months ago. He tested at 18 months two months ago and he has gained an avalanche of words and phrases since then. He’s potty training on schedule like a neurotypical 2 year old. In other words, he’s making progress.

That wasn’t the moment that broke me, though. I asked him if he’d rather an autistic Little Bear or no Little Bear. The obvious response should be, “Autistic Little Bear.” His response was, “Please don’t ask me that.” My heart broke in that moment. My heart shattered into a thousand pieces because, while I’d love Little Bear to be able to walk through this world as comfortable as possible, the idea of this world moving on without him is a possibility I would never want to consider.

Then came the argument of secrecy. My husband does not like to tell people Little Bear is autistic. I tell people all the time. I really don’t see it as a big deal. I tell family. I tell strangers. I tell anyone that wonders why my 2.5 year old acts like an 18 month old. I think it’s better to be honest and have them treat him with kindness and empathy than have them think we’re awful parents. My husband has not told the vast majority of his family. He says, “I don’t see why they need to know. It’s private.” To me “private” means “embarrassing.” His family is “private” about anything and everything that can cause discomfort. I am not. This is a continual collision point in our marriage and I see it continuing to be so as we move forward with Little Bear’s treatment.

So now we’ve gone from having a venting conversation to not talking because I’m too public about Little Bear’s diagnosis. And that, too, breaks my heart.

Look, Mommy! It’s Little Bear!

We were running around the playground playing monster. Mama Bear being chased by Little Bear and Big Bear, although Little Bear inevitably ended up behind and the chased. Lots of laughs and giggling, but then Little Bear tired of the game and decided to walk around and play alone, as he often does.

Screen Shot 2017-04-08 at 1.05.59 PM“That’s Little Bear!” I thought I heard a voice yelling.

Nah, it must be another Little Bear.

But I heard it again and again. And a mother confirming her daughter’s comments.

There was a little girl on the playground who knew Little Bear from Fancy Child Care Center. I introduced myself as his mother and talked to the child’s mother for ten or fifteen minutes. I apologized for my son’s disinterest in her daughter and let her know that he had ASD. She said she understood, although it was quite apparent from later comments that she didn’t. She revealed to me that her daughter had been one of his biting victims, although, seeing Little Bear’s delays, she didn’t seem especially upset by it. She brushed it off as, “She came home saying, ‘Little Bear was mean to me!’ and I told her that I know she’s been mean, too, and so have her friends.”

I explained about the ear tubes and their effect on his behavior. She asked who his ENT was because her daughter needed them. I gave her his name and information and she said she’d heard wonderful things about him. I told her how the fluid had affected his balance so profoundly as a baby that he didn’t walk until a week after they were placed. They were life-changing for him.

Then came the unsolicited advice and excuses, as it always does in these possible-friends situations. I expanded on his delays and she said she had read that children usually focus on one skill at a time, so maybe he was focussing on his gross motor skills rather than his speaking and social skills. She adjusted the amber bracelet on her daughter’s wrist as she explained this alternative fact mined from Google.

I didn’t want another mother to hate me and my child for his disability, so I, “oh, really?”ed while willing my eyes not to roll. Since I didn’t let them roll, I had to also try to fight back the tears that want to escape when I have to make the mother of a neurotypical child understand that my child is not neurotypical and will almost certainly never be neurotypical.

Her daughter tried to play with Little Bear. He would follow her when she ran, but he didn’t know how to interact with her. He just didn’t know what to do and it breaks my heart all over again.

But… in other news… today he said, “There you go” multiple times in socially appropriate situations. Also, he and his brother did an excellent job of taking turns playing a game on the ipad.