Max at 22 months, with a friend
"Marley will be a year next week," Crystal recently wrote to me. Her little girl has Rhizomelic Chondrodysplasia Punctata (RDCP), and has been through multiple surgeries. Crystal gave me permission to share part of her letter, because I thought a lot of you would relate:
"It seems like it's getting harder and harder to not compare her to other kids her age. I guess when she was younger it was easier to not compare because there is such a vast difference between what is developmentally normal and what might be just a little delayed. Not crawling at 7 months is not nearly the same as not crawling.... She is making huge progress and within her diagnosis she is doing amazing. But yet that ugly comparison monster still raises its head from time to time. There seems to be such a fine line between just being grateful that she is as capable as she is and yet still wanting her to meet those 'typical' benchmarks.... So when did the comparing stop, or at least get less pronounced?"
Then I got an e-mail from another mom who had just been with her twin boys, both of whom have cerebral palsy, at an indoor playground. They're two years old. One is able to walk, the other is still crawling. "I got very emotional as I watched all of these kids, some of whom were much younger than my boys, running around the playground, climbing up the stairs and going down the slides all by themselves," she wrote. "I found myself in a state of sadness the rest of the week and I am having trouble getting out of it."
The comparing thing can be pure torture. When Max was an infant, and Dave and I were freaked out by his muscle tightness and a possible diagnosis of cerebral palsy, we'd often check out other kids' hands. "See? That baby's hands aren't open all the way," Dave would say, and I'd feel a little reassured, a little more hopeful. If that typical baby's hands were slightly fisted, maybe it was OK that Max's were, too. As Max got older, the comparing got worse. I'd dread going to playgrounds, parks, zoos or anyplace where there were a lot of little kids. I still remember the spate of first birthday parties and choking back tears as I watched kids crawling, sticking things into their mouth, babbling and doing their baby things as Max sat in my lap, content yet immobile and silent.
Not one other mom I knew back then had a kid with special needs.
The comparing was at its most intense up until Max was three. That was partly because those years are such a tremendous period of development for kids, and the gap between them and Max kept widening and widening. I also lacked acceptance that Max was on a different timeline than other kids were. "The most important thing is that he keeps progressing," our neurologist would tell us. I'd hear the words, but my heart didn't. Because back then, I felt the same as Crystal: progress in whatever increments was important, though I yearned for him to keep up with other kids.
Max hadn't yet grown into his personality. He was always a happy-bubbly kid, but in the early years he was clingy and not yet able to communicate his wants or needs. He was unformed, which meant that it was easy to keep imagining—so desperately imagining—that maybe he'd be like all those other kids at the party.
There wasn't a day or time period when the comparing died down. Obviously, one thing that helped is Max's progress, which both thrilled and reassured us. Still, I had to find ways to deal with my anxieties about the delays. So I'd bail on birthday parties if I wasn't up to them, and came up with things that helped me take more pride in Max, like doing photo shoots with him or asking therapists to make lists of Max's gains and improvements. It may seem horrible that I had to find ways to take pride in my child, but they helped to quell the raging disappointment and anxiety.
As Max got older, I developed, too. If we were at a playground, instead of despairing that he wasn't able to climb the monkey bars or go up the slide, I'd think, "Damn if he isn't going to enjoy himself too!" and I'd help him up or down or any which way around. Focusing on helping your child to the best of abilities is good for both of you.
Making playdates with other kids who have special needs has been comforting to me, too. When Max was little-little, I was lax about that (and in denial). I'd only hang with my friends on weekends and their typically-developing kids. Hel-lo, comparing. Pairing Max up with kids like him was fun for him and cathartic for me—I could trade notes with other parents who really got what I was going through.
The passage of time, Max's progress, helping me help myself: they all enabled me to quit comparing Max to other kids.
Max is who he is—not who he isn't.
At times, I still get pangs when he hangs out with other kids, especially if one's been mean to him, but not very often. Max has come a long way and I have, too.
I know you will do the same.
With Sarah Kate (who has CP), it was a gradual thing. The worst years were ages 1-4 (she is 8 now). It got better when she started school, in part because she had a super-awesome teacher who really cultivated a family-like atmosphere in her classroom. Today, she's like a Rock Star around town - everyone knows her! - and I just don't worry about it anymore. With Nathan (who has Down syndrome), things are different because he hasn't missed any milestones yet (he is 10 months). I know that day will come, and then we'll see how I fair.ReplyDelete
Thank you for writing this post. This is something that I have been struggling with for the past 2 years myself. Comparing my youngest to my two older children, with friends kids, with the kids at work. Waiting and wondering. Trying to convince myself that I am seeing things that aren't really there or don't really matter, as everyone else was telling me I was. Finely in October she got the MRI results confirming that she does in fact have brain damage, which is causing her motor and speech issues. Her new neurologist feels that "she will struggle with some things threw-out her life, but is doing amazingly well". For what ever that is worth...so more waiting and wondering what it will all mean to her. But no more obsessing, I have to save my strength.ReplyDelete
I don't have too much trouble with the comparisons of Hannah with her day care class as they are not too far off just given the natural range of possible behavior in a group of 12 (and, Hannah is much cuter) but my issue is comparing her to her older sister, who didn't necessarily walk or crawl early, and was so very small that she didn't get in normal car seats and boosters, etc. but that girl can and always could really express herself. When she was Hannah's age she had full on conversations with sentences that included clauses and big words and she was even using logic on me. She could sing Twinkle Twinkle Little Star and the alphabet song. Hannah once had a four word sentence like "I no eat it" but mostly we get two words. I think at almost two and a half she is not far off the normal but she is off the norm of me and people like me, for example my daughter. She can count 1-5 cold but with blurry articulation. Claire could speak in paragraphs. I struggle with this one quite a lot.ReplyDelete
Thanks for posting this! I was really struggling with similar feelings last week and it is good to read that other people work through the same stuff, AND that it eventually gets better!ReplyDelete
My Olivia is almost 10 and I hardly ever compare. I used to all the time and be extremely upset about it. Occasionally I do but it's much easier to snap yourself out of it! It gets better. It really does!ReplyDelete
I realized rather quickly that comparions were totally useless. There's just no comparing, and that's that. If your kids are unique, well, they're unique!ReplyDelete
Samuel is 17 years old and has a cognitive of a 6mo old. So as the spread widen through the years, it became ridiculous to compare. Yet, still every once and awhile the comparison monster rears his ugly head.ReplyDelete
We were at services and the youth group was leading the service. They were doing a beautiful job. It was an amazing services, until--my daughter said, "you know if Samuel were normal (where is her first person language), he would be up there doing the service"
Or at my book club where I tell the awfulness of finding adult programming and residential care and then my "friends" turn the conversation to visiting colleges.
So for the most part Samuel is who he is, a beautiful young man with a great smile, who give unconditional love. But every once in awhile it still makes me sad
It's funny, when I see my Max around typical kids I don't think I compare much anymore.ReplyDelete
On the other hand, when I pick him up at school and see some of other kids in the same autism program he is, it seems they are more verbal than he is and more interested in interaction.
One little boy in particular is very chatty & tries to show me around in a way Max never has.
I know I haven't really met all the other kids, and I don't really know what their challenges are. Plus, Max is also smallest kid I have seen in his class. So who knows here he will be in a few years?
This is an important piece and I'm sure resonates with all of your readers.ReplyDelete
How can I NOT compare? People compare typical twins, and now it's compounded. Now, I find I compare with other kids "like Cici," but after 2 years, have stopped a lot because the brain is a funny thing, it doesn't work the same in any two people.ReplyDelete
Ashley is more charming than many kids his age.
He is quicker to make friends too.
Most adults melt when they meet him.
He is more patient than other kids (and me!) and is very caring.
Many people have come over to us to tell us how gorgeous he is.
No other 5 year old inspires me daily. No other 5 year old makes me as proud to be a father and to treasure what I have, rather than what I have not got.
Yes, I compare.
I have a son who is 4 and has Down syndrome. I went through a period, much like you describe, through the Early Intervention years where I would compare him to other kids, my friends' kids especially and feel bad sometimes. We moved through it though, and I basically learned to accept and cherish his progress.ReplyDelete
Lately, however, I find myself comparing his abilities with those of other children specifically with Down syndrome. If there is another child his age with Ds who has better speech pronunciation - or whatever - I feel insecure about it. I think it has more to do with the constant struggle not to feel as if I should always being doing more with/for him. More of a comparison of what I perceive to be parental achievement than of actual ability.
part of the reason the comparing thing is so hard is because we as parents greive what could of been. when we see childern playing who do not share our challenges. we are reminded of what could have been for our child. how easy and carefree his life might have been if he only walked on time or spoke. plus when you work for years to meet one milestone somtimes it makes me sad to know other kids meet these with ease and with out fuss. i want to shout at those parents be thankful. and thats exactly how i stop myself from comparing. i think of all those kids who have to work even harder then mine and i just remain thankful. thankful he has not leveled off, thankful that the wheelchair is not nessary, thankful hat he seeems to be growing, thankful that i am still standing with any amount if energy at the end of the day. it helps to to remind myself the joy of accomplishment is directly related to the amount of work need to meet the goal. so the harder we work the more stasfied i feel when it all pays off. one thing i prey for every night is hope. i just want to be able to hope the next milstone will be meet by the goals dateReplyDelete
Like you, we pass on a lot of things that makes us feel "squishy." That's my word for it.ReplyDelete
I'm like some here who have a harder time with kids with the same diagnosis. Charlie is stubborn and does his own thing and sometimes I go crazy waiting for him to do things on MY timeline.
My 2 yr old son has DS & like Jaida, I often find myself comparing him not only to typical kids, but to other kids with DS as well. I wish that I was above that, but I guess that I have some of my own "milestones" to meet too.ReplyDelete
remember think about what disabled kids can do alone and with help. Thats a lotReplyDelete
oh and Ellen
yes u can use this quote in a blog post I made it up myslef
OK, Dave, that is one of the all-time best things anyone has ever said here. I am reposting it over the weekend in another post. Bravo.ReplyDelete
Advocacy Agency, you're so right, I did a lot more comparing when Max was young because I was still in the extreme grieving stage.
Katy, Jenny and Jaida, for me, the comparing was more intense in terms of comparing Max to typically-developing kids. When I met kids with cp who were doing pretty well, it gave me a lot of hope.
I did a lot of comparing with M, who has an autism diagnosis, until he started at a special school for kids on the spectrum. It's been really comforting to see that he fits in there. The moms and I observe in the hallway for a bit when class first starts and just before it ends, and we take turn pointing out what we see each other's kids doing well. It's so nice because I know it's honest celebrating, rather than people trying to insist (whether out of misplaced kindness or denial) that my son can do what their kids do.ReplyDelete
I do still sometimes forgo activities where I know a lot of other kids his age will be, but overall it's been amazing what a difference having a community of moms who have kids going through the same thing has done for my overall outlook.
omg, max is the cutest!! adore all the curls!ReplyDelete
Love this post and the comments. Both of my kids have special needs. I'm "2 for 2", I guess. Yesterday I spent time alone with the 2 typically developing children of a friend. They are the same ages of my kids. I couldn't help compare and think how "easy" it was being with them compared to my own kids. And how "easy" it must be for their parents to raise them. Then again, I get the indescribable highs of my children's achievements- and that is something other parents *don't* always experience. Our kids have to work that much harder. So when *we* get to celebrate those highs, it is truly amazing.ReplyDelete
I'm sorry, I got totally distracted by the adorableness of tiny little Max. I'm telling you, he has a twin on my special needs soccer team.ReplyDelete
I FINALLY read an old issue of Good Housekeeping and read your "Come Play". Loved your attitude and approach. Many people do seem so awkward when approaching special needs kids. Heck, my son is happy and although he may not achieve goals some parents set for their kids he is happy and afterall what more can you ask for your child? I also blog about special needs (autism) along with my friend in a mix of material. Love your site!ReplyDelete
I LOVE reading your blogs, they are such an inspiration to us moms who have similar stories! Much love to you. Laura www.tayandbri.blogspot.comReplyDelete