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The Stages of Special Needs Grief

The Stages of Special Needs Grief

By Amalah

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.

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Ally
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Ally

My almost 7 year old son was diagnosed with ODD and ADHD this year. Part of me still grieves. I’ve talked to a counselor and that has really helped. I needed to deal with my feelings in a place where I could be honest and not feel judged. I still worry about him in a way I don’t worry about my other kids. I’m always nervous about what is going to set him off. He gets angry very quickly and is still learning about dealing with that appropriately. I hope you can find a good friend who is in a… Read more »

Jaida
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Jaida

I have a son who is 7.5 and has Down syndrome, a daughter who is 5 and a son who is 1. The younger two have typical chromosomes. What Amalah said is spot on. It will get better, but it will take time. The other thing I wanted to add is that the more you are around other kids, if you have more children of your own, etc, you will start to realize that there is no such thing as a “normal” kid. ALL kids have challenges. They may not be as all-encompassing as you are facing at times, but… Read more »

S
Guest
S

Check out the resources from American speech language hearing association. They also run trainings that can be very helpful. There are parents of special needs children who are also speech pathologists ots. Their insight is invaluable. Finding adult friends and kids to play with who accept your family just the way they are is also key. We also realized situations that work and don’t work. The cold noisy splash pad doesn’t. Quiet playground at certain times does. Ignore the comments no one but certain other parents has any concept of your new life. My son has complex medical needs and… Read more »

Tara
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Tara

Oh gosh, I remember this so clearly. It WILL get better, I promise. I’m sure the timeline is different for everyone but just as a data point: S started preschool at 2.9. A month in, his teachers raised some concerns over his speech and how he was interacting with other kids. They recommended a speech evaluation, which we did, thinking he was totally fine – we really had no concerns. He tested within the lower-normal range for receptive and expressive but the speech pathologist was concerned with his pragmatic language and mentioned autism. A month later, we had the full… Read more »

S
Guest
S

I’m right there with you and am eating up the advice. We’ve been in EI for a while longer though, so I can say that the percent delays stop stinging quite so much after a few more developmental tests. The 100% social delays don’t feel good, though. I agree that seeing the waiting room kids is big, it’s good knowing that there are places you can be where another parent is not going to judge you when you walk in with a meltdown-in-progress and practically toss your kid at their OT. The parent who sees you is going to smile… Read more »

Nicole
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Nicole

This. A million times this. Every parent with an atypical child has this experience. Find others who are on this journey. The small group of parents of special needs kids that I am in has helped normalize all these options and thoughts.

Elli
Guest
Elli

My husband is congenitally blind. It’s kind of oranges to limes compared to Autism, being very different types of disability. But you know, there are similarities in the grief my in-laws felt and your own. Although I have once or twice glimpsed the old remembered anguish in my mother-in-law (she felt guilty for catching Rubella and eventually had to see a psychiatrist), they’ve all gotten to acceptance a long time ago and he has given them quite a bit to be proud of. One thing that helps many of the visually impaired people I know is a sense that their… Read more »

S
Guest
S

I think the previous commenter’s description of disability viewed as nuisance is an interesting thought. I’m not the letter writer, but am facing a similar situation. What feels different from visual impairment (and I haven’t dealt with visual impairment so I could be saying something totally wrong and hope I don’t make some offensive blunder) is that autism is just so darned unpredictable. While I can bet there are novel difficulties every day for blind people, I imagine the disability-related concerns all feel similar and have similar solutions. Oh gosh, I feel like I’m probably totally wrong. But it at… Read more »

s
Guest
s

Even with children with autism there are patterns of behavior. Improved communication skills also help, even with aac augmentative and alternative communication because children can tell you more of their wants and needs and use less behaviors. Working with bcbas board certified behavior analysts help to figure out how to increase positive behaviors and decrease less desirable behaviors like non stop screaming. This can make all the difference in everyone’s quality of life. It gets better, it takes time and a lot of work. Take life in small chunks. Lots of parents have had ugly behavior moments with any child..… Read more »

Meagan
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Meagan

My ASD son is almost seven, and the sewer grate comment had me laughing out loud.

Myriam
Guest
Myriam

You know what, we all do it. Even me, with my 2 neuro-typical kids, we all compare and worry. Not to the extent you describe, but I know that was a little worried that my 3 yo wasnt interested in puzzle, because her friend was already doing 24 pieces by himself. And then I got over myself, and my “I’m not a good parent” complex. So, I’m not saying we are facing the same issue. It’s not “important” right now what you kid can or cannot do, it’s that you’re doing it together, with him, as a team. Grieve, live… Read more »

JenVegas
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JenVegas

THIS “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.” My kid is neuro-typical but we have a lot of friends who are on the spectrum and even have a couple of friends who suffer from rare, fatal diseases. I have never ever judged any of my mom friends for keeping their kids at home, or opting to spend time with their child… Read more »

Danielle
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Danielle

YES! Also, at not-even-three, your son *doesn’t* really have to spend that much time with kids his own age. Even neurotypical kids his age don’t really do cooperative play yet. We didn’t start bringing our son, who has high-functioning classic autism, to birthday parties until he was about 4.5. Now, at 5.5 and starting kindergarten, he’s interested in learning how to make friends and we do more playgrounds and stuff, but there’s no need to torture yourselves before your son has gotten to that point in his therapy.

Emily
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Emily

I agree. It takes time. We’ve been on the Special Needs Evaluation Rollercoaster for four years now (now 8 years old and in 2nd grade), beginning with an Expressive Language Delay and this summer culminating with a Level 1 ASD diagnosis. I’ve been through everything you described, and have reached the point like Amy, where it just *is*. Honestly, I had worked myself into an absolute STATE before his big evaluation but once it was done all I felt was relief. It took a lot of wine and a lot of tears and a lot of time to reach that… Read more »

Courtinfl
Guest
Courtinfl

All of this!! I get it!! What helped me was finding our “tribe”. Parents who either were in the same boat or were understanding/non-judging. Things are so much better now. Granted, the mama bear instinct is still trigger happy…I’m working on it (kind of).

Mary
Guest
Mary

My daughter didn’t speak much at all until 22 months. Even then, she would sign but rarely speak in front of others. My 2 closest friends have kids (1 is a year older and 1 is 6 months younger). They both blew my child out of the water verbally and although I tried to not be jealous, I was. Why my kid? Right after she turned 2 she started speaking – and very well. However, I think I learned a lot from my experience and hope to be compassionate for others going through that. My youngest sibling is autistic so… Read more »

Cary
Guest
Cary

Also, feel free to turn down some intervention when you need to. Your job is to love him and learn about him, not to always feel this need to “fix” him. It’s still hard when children and adults give my 4 year old daughter that look. She has cerebral palsy, is non-verbal, and unable to walk. It shocks we in a way, because when I look at those blonde ringlets and gorgeous blue eyes, all I see is absolute perfection. She is the light of our lives. She is pure joy and tenacity, and I could not for a second… Read more »

Suzanne
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Suzanne

As the other commenters said, the grief you feel is normal. It may help you to see a family counselor too, it helped us deal with our feelings, but also to have strategies to deal with issues. And when we did deal with a problem, and were told “you handled that well,” it really helped our confidence to handle the next time.