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The Stages of Special Needs Grief

Aug01

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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.

About the author

Amalah

http://www.amalah.com
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 amyadvice@gmail.com.

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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18 Responses to “The Stages of Special Needs Grief”

  1. Ally Aug 01 at 12:52 pm Reply Reply

    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 similar situation to you. Having people you can be honest with is vital. 

  2. Jaida Aug 01 at 12:54 pm Reply Reply

    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 they are there. Easy toddlers may be awful, rebellious teenagers. Early talkers may have a hard time with math, or trouble making friends. Your son will excel in things other kids struggle with. Early childhood development is so focused on visible milestones, but things really branch out as the kids get older. 

    I loved what Amalah said about waiting rooms with children with special needs and their typical siblings. I feel so incredibly at home, now, with groups of children with special needs and I would NEVER have been able to say that before I had my son. Additionally, my two younger children are being exposed to differences early and often and show a level of compassion and acceptance (well, ok, the baby is a bit young still) that I don’t think many children develop at this age.

    Hang in there, be kind to yourself, take one day at a time and enjoy your son however you can best. 

  3. S Aug 01 at 5:26 pm Reply Reply

    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 our life has a lot of medical appointments. We have met a lot of great parents along the way. Good luck and retread the posts as many times as you need. It will get better, but reach out to communities that can help you. There are tons of parents going through what you are going through. Find your local chapter of autism support group or other group that you fit with. Asha conferences have tons of people who work with or live with people with autism etc. they have many resources and the latest treatments.
    S

  4. Tara Aug 01 at 5:40 pm Reply Reply

    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 evaluation done (just before his third birthday) and they came back with a PDD-NOS diagnosis, recommending speech, OT, ABA, and social skills group therapies. I was totally shocked. Then I started reading everything I could get my hands on while we set up the various therapies (it felt like ages before everything was up and running, even though looking back, it was only a few months) and I started to admit, yes, that did sound an awful lot like S. Then I was where you were for… awhile. Maybe 6 months? A little more? He is now 4.5 and I honestly can’t remember the last time I felt raw and hurt after an outing like you described. Now, he just is the kid who he is. It helped that we’ve seen so much progress with the therapies. The future seemed so unknown at first, you know? And it still is, the way it is for every kid, but I can see him progressing in every area even though new struggles pop up. And I know he’s going to be just fine. (And it also helped that S’s younger brother is now 2, typically developing and oh so difficult in totally different ways. For awhile, it made me feel jealous and angry and sad when people would complain about their normal toddler problems because ours felt so much harder, you know? And now I realize that every kid, typically developing or special needs, is hard and easy in a million different ways.)

    So. Big hugs. It gets better, I promise. You’ll find your groove, your little one will make progress and grow and develop and things won’t feel as raw and hard as they do right now. I’m not sure much helps besides time (and maybe reading Amy’s archives to see how amazing a kid Noah has grown to be!)

  5. S Aug 01 at 9:50 pm Reply Reply

    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 at you. Maybe even say, “He reminds me of my son at that age,” correctly guessing your kid’s age, even though they are far from looking or acting that age. Other people out there get it! Which is why I’d like to suggest, if you can, go to the EI playgroup when you can. You’ll see kids who you’ll get to know and enjoy, who will scream at different things than your own kid. And the kids will be different but you’ll get to be the parent who gets it, too. 

  6. Nicole Aug 01 at 10:49 pm Reply Reply

    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.

  7. Elli Aug 02 at 6:57 pm Reply Reply

    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 disability is more nuisance than disability. They find it’s a useful attitude for them to navigate a world made for us sighteds, makes them feel better and reminds them to look for the work-around when they hit a metaphorical or literal stumbling block. I wonder if it would be useful for a high level autistic person?

  8. S Aug 02 at 8:46 pm Reply Reply

    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 least feels like the solutions are usually to ask for help, feel your way around, try an old route that you know well, etc. With autism, the solutions aren’t as clear because the problems aren’t clear. A parent in the early years at least might never be able to guess which scenarios are going to cause meltdowns or how they can be resolved. It’s the uncertainty and unpredictability that’s so exhausting. I want to say, I don’t think that makes a harder/easier comparison for the kids or parents, it’s just my feelings on why a parent of a very young autistic kid might not be ready to view autism as merely a nuisance. It doesn’t feel like there’s one skill set to improve upon daily (like using a cane, listening for traffic, asking for help). It feels like … Like I have no idea what to do to help my kid. But really, I’m guessing that’s all parents.

  9. s Aug 03 at 1:47 am Reply Reply

    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.. Think of funny things in your head.’ Hello public library we are now the noisiest patrons here. ‘   ‘Enjoy your birthday cake for us, we only eat crunchy things, keeps it easy for menu planning.’  
    ‘We know every sewer grate in our county, public works can rely on us for an inventory.’ Etc. laugh with a friend when needed. 

    • Meagan Aug 04 at 11:05 am Reply Reply

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

  10. Myriam Aug 04 at 11:34 am Reply Reply

    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 and lean… Oh my, that sounds so cheesy… You’re a good mom, and your son will be your “pressiusss snowflake” no matter what! ;-)

  11. JenVegas Aug 05 at 12:22 pm Reply Reply

    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 on their own terms. Or even just…avoiding me if they are having a rough time dealing with it all at the moment. I’m sorry that you are grieving. But, your kid is probably super awesome in his own way and in time you will be able to figure out how to deal with your emotions, and then you’ll have new ones to deal with and I hope those are more…hopeful.

    • Danielle Aug 18 at 2:18 pm Reply Reply

      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.

  12. Emily Aug 06 at 11:22 am Reply Reply

    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 point. But I did, and you will too. And your son will always still be YOUR SON, no matter what labels he carries.

  13. Courtinfl Aug 06 at 11:43 am Reply Reply

    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).

  14. Mary Aug 07 at 12:59 am Reply Reply

    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 I am very familiar with that world and dealing with others who may give a side glance or whatever but it doesn’t bother me. He is my brother, and that’s how he is. But it is crazy how hard it is when it’s your own child and how much a mother can feel responsible and like you should be able to “fix” this.

  15. Cary Aug 09 at 3:59 am Reply Reply

    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 imagine or want her any other way. I think in a way, I am now more drawn to children with special needs. I want to give them the attention they deserve, they remind me of my sweet girl, and I also know how hard they work. You will come out of this a better person, because you will meet amazing people and understand a part of this world that others are oblivious to. Hugs and best of luck

  16. Suzanne Aug 11 at 12:52 pm Reply Reply

    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.

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