Wednesday, April 4, 2012

Raising a kid with special needs: On parent delays and development

When you're raising a kid with special needs, you think a whole lot about their development. You wonder about the whens, you try not to dwell too much on the whys, you go nuts celebrating the you-did-its.

You think a lot less about your own progress, as a parent. I mean, who has time?!

But I've been thinking about this a lot for the last few days, as we've finally gotten into the swing of potty training. It wasn't so much a case of whether Max was ready to be toilet-trained—the truth is, he's been ready for awhile. It was more about my being ready; I'm the one who's been delayed.

I needed to commit to potty-training and acknowledge how important it was for Max.

I needed to break out of what had become part of our routine (changing him). Changing diapers is a pain at times, but when you're used to it it can be convenient.

I needed to psych myself up for the work involved.

I needed to just make the time.

I had a definite turning point. Actually, it was a series of them in which I kept realizing Max was getting older and it was time, like when he got a haircut the other week and suddenly he looked like a Big Kid. But the real moment happened in a parking lot (I also got engaged in a parking lot, more on that another time). We were in Philadelphia, and about to head into a museum. Max needed a change, stat (as in, no time to get to a bathroom) and Dave did it in the trunk of our minivan.

We are like the Dr. Seuss of poop—would you change him in a car? Would you change him in a bar? Would you change him in a boat? Would you change him on a coat?

We've done all that, and Max hasn't minded one bit. But that day in the minivan I thought, Max deserves more dignity, if we can make it happen.

And that's when I carved out the weekend to do potty training.

The process was tedious (although I doubt any mom's ever had a blast potty training, even with white wine), but Max made some nice progress. And then? So far, he's stayed dry in school for two days, and peed whenever they've taken him (every two hours). He's going at home, too, when we take him; he still needs to get the hang of telling us he has to go.

In case you didn't see yesterday's update, I got an email from his teacher mid-afternoon. She wrote, "Max is coming home with a purple crown today. He is King of the Potty. He stayed dry all day again. We are so proud of him and he is proud of himself as well." And the school nurse wrote, "Looks like we are on the way to complete success."

I thought about how the nurse has, for the past couple of years, pushed me to be more diligent about training Max. I could have done this a long time ago. But I wasn't ready. And I'm just not going to feel guilty about that (although guilt has crossed my mind). I've got a lot going on in life, like any parent of a kid with special needs. I do my best.

Just like Max, there are things I do on my own time.


  1. You are singing to the choir! I too had to get ready to potty train. My boys too are too big and it needs to be done. We too are in the habit of changing diapers, and it is convenient. I, however, do feel guilty and totally blame myself.

  2. I really love your blog because it teaches me about a world I don't know first hand. I appreciate how candid you are about your experiences with Max and Sabrina and yourself. Last night, in a fit of insomnia, I was wondering if you would ever be interested in a guest post from a mother (say, me) who has different challenges but still gets so much out of your blog. I found you after my family visited some friends with a special needs son, Gus. Gus is 4 and I was NOT prepared for our 11 month old son to be developmentally ahead of Gus. I sought you out so that I would be "educated" and so that I would get that education with heart, and not just with words or diagnoses, etc. Anyway, it's been very valuable to me and I thought I would share. I would be more than happy to my thoughts into a post if you were ever interested in that. Meanwhile, GO MAX and just as importantly, GO MOM!

    Thank you for all that you share.

    Christie Tate (

  3. Ooooh, I SO needed this today. We're right there on the cusp. We've been holding off b/c Nik isn't able to tell us; it's up to us to watch his body language but we don't always get the timing right.

    I see a toileting boot camp in my future. *sigh*

  4. LOVE IT! We've done all those Dr. Seuss places and an airplane bathroom as well, by we I mean my husband. There's so many other, um, issue to deal with muscle control and medication too. Aidan NEEDED to be changed moments before crossing a finish line with runners who were fundraising for him. We're making slow progress but I'll take it.

    Gold Star for Ellen!!

  5. Good point! I love the idea that parents have to do things in their own time, too.

  6. Awesome! I remember the exact moment where I felt like such a dolt was me! I was the one who wasn't ready. Now I just need to move little man from standing up on the toilet to poop to sitting down. And frankly, I'm not ready for that one yet. Gotta allow myself time to enjoy the successes and work on the next thing when we're ALL ready. Good luck with the rest of the process! Don't forget to reward yourself for all the hard work too!

  7. We r here too Ellen. I love the humor you add. I prefer red wine but to each their own. Ha! I have also been guilty of not having Derek completely diaper free. We travel 80 miles and sometimes further for Dr apt, therapies, etc so its been "easier" to keep up diapers. You are so right about the fact our boys deserve the dignity of not being changed in every flat place when the moments strike. We will keep at it and look forward to reading your trials and triumphs!!

  8. Be prepared for poop in places you never thought imagineable:)

  9. I 100% empathize with you on the Mommy guilt. We aren't quite ready for potty training just yet- first we need to tackle the gtube and feeding pump. But similarly, I find it "more convenient" to just "pump" him up with food rather than stay at home and attempt to feed him every 2 hours. It's odd how for special needs children the unusual is sometimes the norm for us parents. I think sometimes the road less traveled is the hardest and some days I just want it to smooth sailing!

  10. Thank you, thank you, thank you! I am completely in the same boat with you on this one! We tried a potty training boot camp weekend over a year ago and then completely caved because it was too difficult for us! We also have always wondered if she is able to feel the urge to go so we've easily put it off. But, like you, it's something we must do for Malayna's sake. It is on our priority list for summer, when things are a little slower and will hopefully make it a tiny bit easier. Unfortunately, our school isn't as good as yours! I give you so much credit for tackling this hurdle and you are my inspiration!! Go Max, and Mommy too!

  11. Keep it up ellen Max needs to be able to be independent

  12. GO Max!! You are so right - it's definitely a committment and sometimes it's harder for us, than it is for our kids.

  13. Major and minor milestones and every teeny step along the way have to be TAUGHT to our special needs kids, and NTs (neuro-typicals) don't get that "we're not working on that right now," whatever "that" is. It took me an entire month to teach Daniel to shower independently, and about 4 months for hubby to teach him to shave by himself. NOTHING HAPPENS UNTIL MOM & DAD DECIDE IT IS GOING TO HAPPEN.

  14. "There are things I do in my own time." - Words of Truth.

    Not just for potty training.

    I am always grateful for how you model compassion, Ellen. Today, you model compassion for yourself. THANK YOU for showing us what self-acceptance looks like!

    You are ready and Max is ready, and progress unfolds. Kind of like a dance. When the timing is off for one of the partners - it's much more of a struggle. When there's mutual timing - it's much more joyful (though not necessarily without mis-steps and the occasional bruise).

    This is true for every step of the parenting journey. How wonderful that you show us how to choose to accept your own sense of timing. That kind of self-acceptance is contagious (for our kids as well as ourselves).

    Yay for you and Max! And thanks for sharing your journey. You encourage us all.

  15. Do you follow the "My Name is Not Bob" blog? He has an April blogging challenge that I have followed for six days now (in a row!) Today's assignment is to comment on a blog that speaks to you...I've been stalking this blog for a long time, but rarely comment.

    SO! Thanks for this! Potty training is a BIG issue in our house. I go back and forth between giving up and laying down the law. All depends on my amount of sleep vs. amount of energy. Usually, sleep wins. I was struck by your comment that Max deserves that dignity. So true!

    My son is 12 and I cannot still be doing this in 12 years :(

    I blog about my son and our adventures with Smith-Magenis Syndrome at (This is the second part of my assignment :)

  16. Sigggghhhhhhhhhh...........

    Sheesh, way to make me feel guilty.

    LOL!! Just kidding. I totally relate. Not about potty training, yet, thank goodness, but mainly about spoon feeding.

    Benjamin (non-verbal, Down syndrome) is almost four and still struggles with self-feeding. We have to monitor how much finger foods we give him at a time b/c he chokes easily (been there, done that, have the heart attack), but I have been dragging my feet on making him feed himself (applesauce, yogurt, oatmeal) with a spoon. He will do it sometimes, but he is my middle child. I simply don't have time for meals to last 45 minutes. But I think he's ready. I'm just not. But I need to be. You're right--it's convenient when it's what you're used to.


Thanks for sharing!

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