Guest Post: Special Needs & Free-Range!

Hi Readers! Here’s a feisty post from Ellen Seidman, a New York mom whose blog is Love That Max. She’s also hoping to win a blogging contest at Parents Connect, so if you like what you read, go vote for her here. (Hey, why not help each other out?) Onward! — Lenore


The other day, I was Twitter-ing with a mom of another kid who has special needs, and she asked me how protective I was of Max. I wrote, “Not very. If his NICU experience didn’t kill him, nothing will.” I think I may have shocked the hell out of her, but it’s true.

My little boy, Max, had a stroke at birth. And, yeah, until he was born, I didn’t know that babies could have strokes at birth either. But he did. And it put him at risk for all kinds of terrifying things. We were told he might never walk, he might never talk, that he could have mental retardation, and that even vision and hearing problems were a possibility, because of the brain damage. He could have cerebral palsy, too. A doctor told us we could sign a Do Not Resuscitate if we chose to.

As depressed as I was during that first year following his birth, I went into overdrive doing whatever I could to help him. My husband and I got him therapy up the wazoo. We fed him fish-oil supplements, to feed his brain. We tried alternative stuff including hyperbaric oxygen treatment, which entailed either myself or my husband and Max lying in some claustrophobia-inducing tube infused with 100 percent pure oxygen, to spark dormant brain cells. My husband and I used to joke that we were all going to be geniuses.

Max progressed on his own timeline but, most importantly, he progressed. He walked at three. He said some words at four. At seven, he still can’t quite talk, but his vocabulary is growing and he has a cool iPad app that speaks for him. He has trouble using his hands, but he manages. He was diagnosed with cerebral palsy but it’s mild and it’s just an f-ing label. Max kicks butt.

As focused as I’ve been on therapy, I’ve been pretty relaxed about potential health hazards in his life. I mean, yes, we babyproofed the house, he wears a bicycle helmet when he rides his little tractor and I don’t let him play in traffic or anything. But when he was a baby, I didn’t care all that much if he, say, ate a dustball. These days, I don’t obsess about him catching colds or other icky stuff from other kids. I don’t freak out if he bangs his head. So what if he has McDonald’s for dinner two nights in a row? At least he is getting calories because man, this kid is skinny (when you have cerebral palsy, your muscles burn calories faster). I just can’t worry about the little things that could go wrong, because I have some really big, bad things to worry about.

I have a child who went through hell at birth. He is doing amazingly well for himself. He has his physical issues, but is basically healthy and not medically fragile. He survived a massive stroke. He is a fighter. Just like his mama. — E.S.


30 Responses

  1. I’ve been reading this blog since it began and every day it convinces me that kids have more talent and ability to deal with their world than any adult could ever imagine.

  2. What a cutie he is!
    My son is a couple months away from being 3 and he doesn’t say anything at all. It’s really easy to let other people (from doctors to neighbors) freak you out when your child isn’t following a typical developmental timeline, especially when there was trauma at birth. This post is a lovely reminder that our kids may be different, but they are still perfect, just like anyone elses child. 😉

  3. I love Ellen’s ability to see her life with her son with perspective. Max has needs and she works her butt off to help him where he struggles. But in the areas that he doesn’t have extra challenges she doesn’t try to be more than he actually needs. I think such and approach helps both her and her son to enjoy life to the, er, Max 🙂

  4. Damn you, for making me cry first thing in the morning! Wonderful post and accurate perspective.

  5. Keep kicking butt, Max!

    Kids who are born with disabilities don’t know they have disabilities, so they stand a great chance of working around them.

    Kids who are born with disabilities learn they have disabilities from adults, and what they do with that information — ignore it and keep chugging along (like Max) or fold up and become helpless — depends on their experiences before adults spilled the beans.

    Max will be just as he is — just great. That’s because of the excellent parenting he’s receiving. Keep up the good work.

  6. Oh man, look at that smile!! Bring on the fear-mongers, that boy’s joy cannot be contained. Thank you for sharing. Great job Max, keep those parents running!!

  7. As a speech therapist that works with brain injury, I love this post!! ❤ Go Max.

  8. Pure. Raw. Awesome.

    Life is its own reward. Go Max!

  9. What an adorable child! That smile is so full of personality. You rock on, Max!

  10. What a cutie!!! I’ve found that parents of special needs kids can be way more laid back than parents of so-called “normal” kids. Why? Because they know things could be a lot worse, and they don’t sweat the small stuff!! Ellen and Max, keep kickin’ ass!!

  11. Go get ’em, Max! And go get ’em, Ellen! How wonderfully refreshing to see the parent of a special needs kid treat him like a KID, instead of a porcelain doll.

  12. I have Asperger, diagnosed when I was well into my 30s.
    Now I “teach” a group of 5 boys 12 y o with asperger basic cooking. At christmas we decided we’d do ginger bread cookies. Being an avid baker myself I sent out for elaborate sprinkles and non-pareils, I brought my craziest cookie cutters and we set to work.
    I supervised some, as the settiing of oven temperature and how long they were due to be baked.
    They had a blast. God knows I had a blast.
    When the parents trickled in suspicions arose. Had they done all this? Themselves? With only ME as supervision, after all, I have Asperger myself. No injuries, no burnt kids, no one sat in a corner crying over the colour of non-pareils. The kitchen was clean.

    Of course, these kids has their problems and you need to know those but you can’t truck down the “special-needs” track all together. Eventually they will live on their own and you need to feed them confidence in what they can do, rather in what they can’t.

  13. I just LOVE this post, Ellen. My daughter has a complex heart defect. She’s had 3 open heart surgeries and is doing great, but there’s no telling if or when her heart may begin to fail. She could live a long, full life or she could need a transplant next year. As a result, I’ve become an in-the-moment parent – partly because thinking of what could lie ahead is terrifying, partly beccause I want to enjoy every minute of my time with her. And I don’t sweat the small stuff – because as long as she’s with us, that’s all that’s important. We could have lost her like many other parents, so we live our life to the fullest and let her be a kid. I’ve already been through hell….there isn’t much that could be worse than having your baby in the PICU with her chest open.

  14. Thank you for this! My daughter Jordan, now 15, had a stroke at 11 weeks after being shaken by a babysitter. Years and years of heart-stopping challenges, but you know what? She never gets sick, she keeps the household schedule (TBI kids and their OCDs, right?) and she just got back from a weeklong camp session at a typical kids’ summer camp. I’m still learning how to back off and I still can’t believe I put her on that bus by herself, and articles like yours are very encouraging. Max is very fortunate to have you.

  15. Thank you so much for this. My seven year old was born with a cyst in his brain where his left frontal lobe should be. He didn’t speak until he was four. I have been trying really hard to let him grow up free-range, despite some family members wanting me to wrap him in bubble wrap. Now that he can speak clearly I have no problem letting him walk to school and even letting him take his little sister to the playground since he can ask for help if he needs it.

    I have always been laid back with him and I think it is because I avoid reading parenting books. Special needs kids are not represented in those books so they are frustrating and pointless to read. It has freed me todecide for myself what to be afraid of–fear mongering authors wanting to sell books can’t tell me what to do. (we also don’t have cable so I don’t watch news channels either.)

  16. I read this post this morning and then took my 9 week old to the park.

    While we were there, a little boy about 4 was rode through on a trike. Yup, trike. And it had one of those tall handles at the back that are for the grown up to push when the little one decides he’s too tired to pedal. Mom was holding it the whole time. But it gets better still – the trike had a raised back seat and a 3-point seatbelt!

    Meanwhile, there was another family there with a 5 year old with Down syndrome barreling around on a big-boy bike with training wheels 2 inches off the ground.

    The scene was just priceless!

  17. Wonderful post. What a cutie he is. 🙂

    Except for being vigilant about no small items she could choke on (my daughter has pika as well as autism) my husband and I try very hard not to be over-protective either. She rides a trike without the three-point seat belt and is allowed to play in the nearby lake — supervised, but without a life jacket. The last thing we want to teach her is that she can’t do things other children can. She CAN, even if it takes her longer and she does things a little bit differently or needs to be taught in steps and stages.

    @Hilary: have your had your son evaluated? It’s possible that he’s just learning to talk on his own time, but if there is something hindering him getting Early Intervention services could make a world of difference in his life.

  18. Max looks and sounds like an awesome kid. And you’re more than awesome, Mom!

  19. Thanks to everyone for the amazing response! I can’t argue, Max is a cutie. And in case you were wondering, he gets his good looks from his mom. He, he. Jen, I smiled at the words “wrap him in bubble wrap.” It drives me nuts when people think Max is some fragile creature.

  20. Boots, my son, has some mild cp, the result of a massive brain bleed at premature birth. His left side doesn’t do what the right side can.
    Your post warmed the very recesses of my heart. I totally get that you love Max enough to let him be Max.

  21. He’s so cute!!! Awesome stuff. Great blog. *thumbs up*

  22. On the other side of free-range, I recently took my baby for a swim at a nearby state park. While we were there, a little guy came up to us, very excited to see the baby. I couldn’t diagnose him, but he clearly was developmentally different. However, he was really sweet and just wanted to hug my 3 month old. His mom came running over to protect us, but I think that she really appreciated it when, instead of pulling the baby away, I helped her son carefully hug him and gently hold his hands. The baby is fine with anyone who smiles and talks to him. It drive me crazy when other people squelch a kid’s attempts to interact with the world because they are afraid of differences and unwilling to take a little time.

  23. Beautiful! Just beautiful, props to you Ellen for doing what you feel is right and props to Max for just being Max!

  24. aw, and he’s so beautiful. that’s lovely. my daughter was born premature and with a birth defect that was repaired through surgery, and now she is 5 and just fine — but there was a period there where we were waiting for other shoes to drop because her particular issue often comes with associated problems, which fortunately haven’t materialized.

    as a preemie though, she still was behind the curve on some developmental things, always coming in at the laaaaaaast minute of the “normal” range. but really, after a rather harrowing start, and a first year worrying about what was going to develop, and then a second year where her road to eating solids was paved with barf (her defect was related to swallowing), who cares if she crawled at 6 months or a year (or in her case, butt-scooted!), or if she walked at a year or at 18 months, or if she talked at 18 months or at two, she got there.

    now she is a Force Of Personality who cannot be contained and MAN is it hard to let go and not pass on my fears. but with every little victory over my own cultural paranoia, we both grow. that’s all you can really do, isn’t it? special needs or not, you just gotta have faith.

  25. You are a great mom! I have a nephew with cerebral palsy and it’s no joke what the mothers of these beautiful children go through. You are a fighter and I applaud you for that.

  26. Definitely don’t sweat the small stuff here. My kid is unbelievably tough–he wouldn’t have survived into his teen years if he was as delicate as he looks, or as fragile as his thick medical files might suggest. I know what might happen–I’ve called 911 and taken the ambulance ride with sirens, I’ve seen him through surgeries and casts and stitches, I really am fully aware that things can go that direction. But being aware of the possibilities and being petrified about them are two different things.

  27. Like!

  28. What a great article! Go, Max!!

    I grew up with a child who, due to genetic issues, still operates at the level of a 3 or 4 year old. I remember the milestones we celebrated with him– language development, better motor skills, etc.

    He now lives in a group home, takes the bus by himself to his day job and back everyday. The doctors had told his parents he’d never be able to walk or speak. He is a testament to the vitality, the spark in each of us. I think with most special needs kids, you see the spark a bit more easily because they work harder at many things than others.

    There was a great article in the Washington Post magazine a couple months back, a mom writing about her autistic 21-yr old son going around on Metro by himself. She wrote a lot about the strength it took her to let go a little and allow him to find his own way.

    Love that big smile, Max!

  29. Beautiful article. I am a nanny/pretend older sister to a girl with CP and other developmental delays, including speech. It always amazes me how nearby parents freak out when I try to let her do things on her own. (We spend a lot of time out and about, at the pool, the park, the library, etc.)

    My goal is to try to ask her to do for herself all the things that I know she can, plus a little extra – she frequently surprises me! Parents at the pool are always a little put off when I stand and ask her to shut off the outside shower herself when she’s done instead of doing it for her, or when I try not to help her up when she’s sitting or lying around. Fortunately, parents of kids with special needs always seem to get it!

  30. Great article! Reminds me of a lot of what I’ve learned and dealt with while raising my son (autism).

    Would it be possible to get the name of the ipad app that was mentioned?

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