Forever Grief

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“But the gift of acceptance was still elusive. Some days, even weeks, I would walk around thinking I had made it and then something would happen. [A relative], just four months younger, would sing me a song, and I would be leveled, blindsided by the grief that seemed to lie dormant and then resurfaced when I least expected it.”

It’s hard to know where to start with this review. Forever Boy is about being the mother of an autistic child. The author writes early in the book, “Finding others who understand is life-changing.” She’s right. Her Facebook page was recommended to me a few months after my son’s diagnosis and I couldn’t even hazard a guess at how many times I’ve cried reading her posts. While all of our stories are different, there are a lot of common elements in how a parent processes this difference. I’ve felt doubly different, being neurodivergent myself, understanding my son in a less common way, but feeling too different than other autism moms who say things that unintentionally become personally insulting to me. Kate is the exception.

“I became his person and he became mine.

“But in time I learned not to let these people limit my child’s future. Professionals are here to help us and often they do. But they don’t have a crystal ball or the ability to predict a child’s future. Regardless of whether they end up being right or wrong, the one thing we can’t let them do is destroy our hope.”

Like Kate, my son has apraxia and started talking after he got an Assistive Tech iPad. The inability to communicate seems ten times worse for autistic kids who process the world differently than NTs. Until they can tell us their basic needs, we have to guess. And the supposed experts don’t know much. It’s frustrating being neurodiverse and having to deal with medical professionals who act like authorities they aren’t. I’ve had my own diagnosis man-splained to me (and he got it wrong—shocker) by a doctor who should have known better. I’ve been told sensory processing disorder is a “theory” in response to me telling a self-described expert that I have it. And when my son got his diagnosis, I asked which therapies (e.g., music, play, speech) were shown to be the most effective in research and was told that those making the diagnosis couldn’t possibly have read all the literature to know that. I’m lucky to have an economist friend who reviewed the literature for me. Turns out it’s remarkably easy to make a recommendation, even if that rec is a subject of massive contention in the autism community. What’s difficult is determining why autism has become incredibly common and yet there’s still no great system for determining what sorts of supports any individual needs. It’s frustrating that we don’t get to hear more #actuallyautistic voices and instead have to listen to NT people basically guessing.

“If I were to describe Cooper’s toddler years with one word, it would be lonely, a word that I didn’t know before having a baby could be associated with motherhood.

“And opening up and being honest about our day-to-day struggles and my heartache didn’t come easily to me. So I had pulled away from most people. My friendships were suffering. I sugarcoated the challenges with family. I wanted to believe if I just kept going, and kept doing more for Cooper, that one day, he would get better. But it wasn’t happening. Autism had woven its way into every aspect of my life and had consumed me.”

It’s still lonely, five years in. Your best friends may not know what to say and say nothing/ghost you. You feel ashamed or in my case ready to put anyone who says anything shitty about your kid on blast.

“The world is such a cruel place to anyone who is different. And there is nothing I could do to change that.

“Grief. It comes out of nowhere. I don’t think it ever goes away. It couldn’t possibly. But grief is love. Grief is help. Grief is acceptance. And I will carry the weight of grief with me forever.”

It’s hard not to question why. Why the eff didn’t anyone notice this earlier? Why are there so many hoops to access early intervention and later supports. Why does it become another full-time job to navigate this system? And the worry: Did I do something wrong? Did I cause this?

“I was a smart, strong, devoted, capable person and I could make this better. I had the power to make this better. And now that we had a diagnosis, it should be easy. Someone, I wasn’t sure who exactly, will tell me what to do. Like a prescription of sorts. Cooper wasn’t the first autistic kid diagnosed, nor would he be the last. I would just help him. Simple as that. By my calculations, he could be fine by kindergarten. That was the goal I set for myself.

“I realized in that moment it takes a strong person to have a child in special education. There are no bells and no whistles. This was his first year in kindergarten and I wanted to celebrate it, but it felt like the public education system was telling me it wasn’t going to be special. It was going to be sad and dark. But the special education families, our stuff is always during the workday. Every meeting for an individualized education program or IEP, every conference, they are always during the week at a time that is difficult for any working parent.

“Stepping off the path that every other child follows is crushing, and one of the hardest steps you’ll ever take as a special-needs parent.”

There are some heartbreaking stories in this memoir about Cooper being left alone in a classroom while all the other kindergarteners are off at a Christmas party, put in the audience while the rest of the kids sang in a holiday carol-type situation and punished by taking away his recess. My son was in a special autism preK one year and he and his classmates were able to perform in the holiday program. My son couldn’t speak nor sing but participated by ripping the Santa hat off the classmate in front of him dozens of times. The kid next to him tried to elope off the stage. The teacher deserves every last award. By that point, I was able to laugh about it. My husband laughed his head off when he saw the video.

“As we walked out, the chatter of five year old voices leveled me. I cried the whole drive home again. It wasn’t supposed to be like this. This was supposed to be such a fun day.

“Over the years I’ve talked about the linear nature of childhood development. Babies, infants, and toddlers typically learn skills and hit milestones on a prescribed timeline. It’s so predictable that you can buy books or subscribe to emails that will tell you what your child should be doing at any given time, give or take a few months. Most parents just have to follow that plan that the system lays out for them. But for Cooper and kids like him, there is no clear development plan.

“When you have a child with special needs, you have to pick and choose what’s worth fighting for and focus your energies on that. Because if you try to fight everything, you will get burned out.”

It’s hard to understand whether the focus on milestones really does jack s*%t. Seems like there is funding for putting up posters and freaking out parents, but no extra funding for support services for all the kids who need it. We paid out of pocket for a lot of services that would’ve taken at least a year to get through the bureaucracy. And we apparently live in a “good” state for disability. It is hard to think about all the kids who could communicate with an iPad if only they had the opportunity to have one at school.

“Self-care. It’s a buzzword that makes most special-needs parents cringe. We don’t have time for extras in our world. Once I counted Cooper had on average seven additional appointments a week on top of school and being a kid. Think of a combination of speech therapy, occupational therapy, play therapy, feeding therapy, medical appointments, and appointments with his social worker. I also had another son to care for, and a house to manage, and a job to work. Self-care was not a priority.

“I thought about autism. His autism. No one told me it would all be so challenging, that every day would feel like climbing a mountain. They also didn’t tell me it would be so emotional. That seeing other children his age speaking and playing would almost drop me to my knees. It felt as if the world had long passed us by and forgotten about my beautiful boy.

“My six-year-old son had severe, nonverbal autism. It’s the kind of autism that no one talks about. The kind that isolates families. The kind that doesn’t sleep. The kind that forces a person to fight for every possible service and basic right. The kind that is completely and utterly depleting. The kind that feels hopeless at times.”

My son’s autism is different than Cooper’s, not severe but not mild. Functioning labels are not only horrifying but simplified so much that they are useless. Please, if your friend tells you her kid has autism, please don’t ask if he’s high-functioning. Please don’t buy into this false idea that autism is screaming meltdowns or Rain Man. Please.

“Take the help. Your life is difficult and it’s OK to acknowledge that it is hard. Take respite, take the offer from a friend to make dinner. Take financial help. There are no metals given out at the end of this life for the person who suffered the most.

“Always try one more thing.

“Celebrate everything. Every small, tiny, huge-to-you victory.

“Speak your truth.

“Choose joy.”

The advice at the end was a nice bonus. She’s been through some things. Can’t think of another book on autism that mentions the literal sweat. This book was so hard and made me cry so much. But I’m glad I read it. You can’t hold your grief in forever. Sometimes that is the hardest thing. Those awful days where you feel all alone. Questioning how you will make it through. Hating that everyone calls you strong. Friends and family may fail you. Things look bleak. You feel your feelings and then you go give your kid a hug. And start all over again.

**I received a review copy of this book from Bookish First. (I also pre-ordered it months ago so I will have two copies on April 5.)**