The Stages of Special Needs Grief

Dear Amalah,

I wrote to you several months ago about getting my little boy speech therapy (Dispatches from Speech Delay Island). Thank you and all your commenters for the kindness and encouragement. A lot has happened since then. My son started going to speech therapy twice weekly and, basically, made very little progress for several months. Around his second birthday, in February, his speech therapist suggested having him evaluated for Early Intervention (EI). So, we did. It was awful. He hated the evaluation, I hated watching the evaluation because it forced me to be aware of all the things he wasn’t doing. Before the evaluation, I worried he wouldn’t qualify. After the evaluation… well. Wasn’t that silly. Over fifty percent delays in multiple areas, significant delays in the rest.

So, on top of speech therapy, we started meeting with an EI consultant and his dad takes him to a special needs playgroup weekly. His language has improved somewhat since then – receptive is better, he tries to imitate words when we prompt him to, and there are about ten words he’ll say spontaneously – but it’s slow going. Anyhow, a couple of weeks ago, his EI worker brought up autism, as in, she believes he has it, now that she’s gotten to know him. And, really, I agree. It’s like he got to age one and just stopped in some respects, and even went backwards in others – particularly awareness/enjoyment of other people. I’ve been reading non-stop since then and looking at him more clearly, I think. Not clinging so much to every time he smiles or makes eye contact as proof that he doesn’t have autism, but seeing that in the context of a child who rarely responds to his name, who doesn’t really share joint attention, and who was absolutely miserable at the splash park yesterday when every other single kid his age just KNEW how to play and have fun there.

Anyhow, my question isn’t so much about next steps. He’s already in speech and EI and we’re going to get a referral to occupational therapy (OT). We’ll look at getting an official evaluation and diagnosis when he’s closer to three. The question is more about handling my emotions relative to seeing him around neurotypical kids his age. It’s, well, awful. Family get togethers. Playgrounds. Seeing kids that are much younger than him who are at his level or more advanced, seeing kids his age or a little older who seem to be a whole different species of child. When we’re at home and I’m just playing with and enjoying him, I’m fine, but after an outing that involves other toddlers I’m pretty well a wreck. I can keep it together in the moment, but later on I just feel so very raw and cracked, emotionally, for quite a long time. So, what I need to know is, is this going to get better? Are there things I can do to make it better? I try to focus on what he can do instead of what he can’t, and I love him so much, but it just plain hurts. Scared and sad and shocked all over again. He needs to be around other children his age, and I want that for him. I want to be able to watch him with other children and just be able to accept who he is without hurting so much. I don’t know how to do that, yet.

Thank you,
Trying to Be Okay

This will get better. Easier.

But it will take time. I don’t know how much time, and I don’t know any magical shortcuts or affirmations or book recommendations to speed up the process. Other than to give yourself permission to feel how you feel.

You will absolutely come to accept who he is, in time. But to get to acceptance you’re gonna have to take a little detour through the stages of grief. Because yes, there is a grieving process going on here.

At first, you (or the people around you) probably dabbled in a little denial — just give him some time, kids all develop at their own pace, Einstein didn’t talk until he was three, etc. There may have been some anger along the way as well, at evaluators, at your insurance company, at your friends who all sat there with their typically-developing kids saying stupid things because they just didn’t understand. I even distinctly remember bargaining with the universe — okay, I can do a speech delay, but please no sensory stuff. Okay, sensory is doable, but OMG, please no ADHD or Autism. (Which is exactly the dual diagnosis we ended up with.)

So it sounds like you’re now at the depression stage. Which: good news, acceptance comes next! But: bad news, this stage sucks. I remember it like it was yesterday, exactly how you’re describing it: Any outing that involved other kids was just…AWFUL. So, so awful. I would come home and just straight-up cry. We’d try to do something “fun” and it would end up being a disaster, and I’d wallow in the heat of every comment or side-eye from every child and adult who witnessed my son’s meltdown. Or he would behave just fine, but some kid would be all, “he talks funny,” or some adult would say, “he’s too big to be in a stroller.” Or nobody would say ANYTHING AT ALL, and yet I couldn’t stop sizing up every child on the playground and making note of all the things that my son couldn’t or wouldn’t do yet.

I don’t do that anymore. I don’t particularly remember when I stopped.

It probably happened gradually. I spent more time at his OT’s office, where the waiting room was always a mix of special needs children and their typical siblings. We moved him from a typical preschool to PEP, so playdates and birthday parties tended to be more inclusive and understanding. I met families whose children had much more profound delays and needs than my own, and slowly learned to live outside of my own head and be grateful for all the strides my son was making. My almost rabid need to defend him and “fix” the world for him faded into something calmer and more matter-of-fact. Acceptance. Other kids aren’t like my kid. Some kids are, though. If you mess with him I will smack you down, no doubt, but I’m no longer constantly on high alert and primed for a war.

I still worry about him, in a slightly different way than the way I worry about my other children. I worry each new school year, and junior high and puberty and high school and college and jobs and living arrangements and relationships. But it’s not an open wound anymore, raw and cracked and bleeding. It’s more like a bruise, or a old knee injury from high school. There, but not right on the surface, filling you with pain on a regular basis.

I was talking with a dad recently — we’d just met through mutual friends and he very off-handedly mentioned that his son was on the Spectrum, very high functioning, but still. You know. And I did! Exactly!  We compared notes and therapy histories and IEP experiences for awhile and then he asked, “So do you ever watch kids on the playground and go like, that kid should be evaluated, and so should that one, and probably that one.”

And I had to admit that yeah, I’ve probably done that. I know I’ve shared our story with other parents in hopes that a lightbulb will go off in terms of their own child, who even in my untrained eye seems to be exhibiting a lot of the red flags that led to our diagnoses.

In other words, a far, far cry from looking across a playground and seeing nothing but perfect, easy, neuro-typical kids.

It will get better and easier for you, too. Just give yourself time. Turn down invitations if you have to, don’t force yourself to attend situations where you know you’ll be miserable because you feel obligated to take your son — don’t ever feel guilty for just staying home with him, because it’s where you’re both the happiest together. That is never a bad thing, for any child, even one who needs to work on “social pieces,” or whatever. Write stuff down. Throw stuff. Put the special needs parenting books down every once in awhile and re-read The Hunger Games instead. Watch a movie that makes you cry to get “it” out of your system without having to specifically cry over “it.”

Hopefully, in a few weeks, you’ll look back and realize you feel better than you did when you wrote this letter. Maybe not all the way better, but a little better. And then a few weeks or months after that, more better. Hugs, and best of luck.