Monday, November 1, 2010

That gotta-do-more-more-more-for-my-child feeling

So, today I told you guys why I was driven to go all out on the car wash I made for Max. But after I read the "You're a great mom!" comments here and on Facebook, I realized I'd left out one thing:

This costume was brought to you by guilt. The guilt that I don't do enough for Max.

Let me just say, I know I am a good mom—or, on many days, a good-enough mom. But then there's the fact that I work. And that Max has a fair number of challenges he needs help overcoming. And that there are many therapeutic things I could be doing for him, adaptive activities I could be exploring for him, computer apps and programs I could be looking into for him, stuff I could be programming into his iPad and Proloquo2Go for him. And that there is a whole lot of stuff I don't get to in a week, even though I still manage to blog. And that often, I just desperately want to relax and enjoy Max and not think about anything but the fact that he is a sweet, fun-loving, supercute kid who gives me lots and lots of kisses.

I want weekends off from special needs.

I've quit feeling bad for not doing every single thing therapists recommend. I know that a lot of benefits come through just playing with Max. Max is going to be eight next month (!!!), and he's made incredible progress, especially this past year. But still, I wonder...

What else can I do for him????????????

How much can I help???????????

I spent a lot of time making that Halloween costume because I knew there would be a payoff: Max's happiness. The car wash was something concrete, a feat I could for sure pull of with my imagination and my hands (not to mention a boatload of duct tape).

All that other stuff: No do-this-then-this-and-the-result-will-be-that payoff.

I am proud of that costume.

I am beyond happy Max loved it.

I'm still working on the satisfaction of knowing I'm doing the best I can.


  1. When I saw the title of the post I thought "oh no". I sure know THAT feeling.

  2. I feel like you often read my mind with your posts. Today, I had one of those days of "maybe I'm not doing enough. I need to WORK with her more." Sometimes, when the progress is slow (which is often), I'm haunted by that notion that I AM not doing enough (also a working mom and I can drive myself crazy googling therapies, ideas, etc). And you say it perfectly . . . sometimes, I want to just be "mom," not advocate, not therapist, and I just want to play. I too wish we could have the weekends off from SN. But, watching Max, knowing that the progress is still happening -- non-stop is oh so comforting, so thank you for sharing his (and your) journey.

  3. I know how you feel, but you really have to give yourself a break because otherwise you will burn out. Even if your kid has special needs, you can't completely sacrifice all of Mommy's needs 24-7. Plus Max needs time to relax and be a kid himself without constantly being pushed to achieve some goal.

    Therapists mean well but often they don't have a clue as to the impact of their suggestions on the well-being of the family as a whole. I've had to tell therapists "thanks but no thanks" when it came to yet another class or intervention, simply because I didn't think the cost in time and exhaustion was worth the potential benefit.

    You are a great mom and you shouldn't feel guilty for taking time for yourself. You deserve it!

  4. We all deal with that guilt. We have to get over it because we're only human and can't do it all!

  5. i was just talking to my mom (herself the parent of 3 kids with various special powers) about the guilt today. i know the books say we should spend 25 hours a week doing therapeutic activities with our son. i know there is more i could be doing. parent directed play, child directed play, verbal exercises the therapist has suggested, etc. but i take my son to therapists 5 days a week and when we're home i just want to relax for a bit and let him run around and take advantage of any cuddles he feels like giving. it's hard to find the balance sometimes.

    1. Wow you sure dont know that it should be a upper NOT lowercase I. For a typically developing adult, your appalling lack of grammar is shocking.

  6. Oh yes! Totally relate! School has come as a challenge to me - Mikey comes home tired and we're tired so we don't do much. I sometimes don't even get round to his homework. I'm 'doing' less than I ever was with him. BUT, his school is amazing and like a full day of therapy. Hard to not feel guilty that I'm leaving it to someone else...

  7. Look, you can feel like crap or not. I think you should choose "not." You need to work, not just for the money, but for the sanity that interacting with other adults provides. You also don't need to be push-push-pushing with relentless education and frantically turning every event/occasion into a teachable moment 24/7. Kids don't like that, in fact, they hate it--they aren't robots, they like to just "be" too. Everyone needs some downtime.

    I dump a ton of necessary crap (appointments, childcare) on my parents--do I feel guilty? Sometimes. But I also know they like being needed, as in REALLY needed, not "fake/sometimes" needed. So it all works out. I get over it.

    You do what you gotta do. That includes playing, stopping and smelling the roses, and just ... being. The time goes by fast enough without ticking off the moments of guilt. Jettison that guilt and just enjoy your kids.

  8. Ellen, I think that all of we moms to kids with "special powers" struggle with the guilt thing. I only work 2 days a week. Three days a week, my son has therapy appointments & music class. On the other days, sometimes I feel up to researching about DS. Some days I try to follow all of the OT/PT/ST/MD's recommendations to a tee. Some days I feel like I'm trying my best. But then then there are the days when I JUST DON'T WANT TO. I admit it. Sometimes I just want to play with my kid without thinking about if the activity is promoting a "pincer grap" or some other fine motor skill. Sometimes I want to hand my kid a cup without thinking about if whether or not he is retracting his tongue or having proper lip closure. Sometimes, I just want to sit on the computer & read blogs & not do anything else at all. And those are the days when I feel guilty. When I feel like, if I was working harder, than Josh would be talking or walking by now. Sigh. Hoping that one day I will learn to accept my own limitaions.

  9. As all the others have said, as moms we feel we have to do it all. But as my son's Yoda-like PT has told me many times, I am first and foremost Joshua's mommy. I'm not his therapist, I don't have to be his therapist...I have to be his mom. Our kids, in this respect, are just like every other kid in the world. They want to feel loved and respected and that they are safe with us. They don't want to feel pushed into working all the time (and we know just how much harder our kids work than other kids!). Mom's of typically developing kids don't go over grammar and math and science when their kids aren't in school...we don't need to do PT/OT/Speech when our kids are snuggled up next to us. Let the guilt has no place in your world. :)

    On a totally seperate note, my husband and I watch videos of Max and simply hope that our son looks like that at 8! Max has the same charming smile and flirtatious nature that our son, Joshua, does. I'm so glad I found your blog...I relate to everything you post and it usually makes my day.

    Keep up the good work...Max is awesome.

    1. Sorry but your idea that moms of typically developing kids don't go over grammar and math and science when their kids aren't in school is wrong. I'm sorry to burst your bubble but Asian moms do make their kids do science, maths etc even when they are out of school.

      While white moms do it to a lesser degree as they have their priorities straight, some do. Really sorry to break your fantasy but that is the reality.

  10. You can't do EVERYTHING. You'll have therapy burn out, and so will Max. That's worse then feeling guilty.

  11. ALL moms feel this way whether you have a child with special needs or not. I'm sure you've felt the guilt of not being able to split your time evenly between Sabrina and Max, given Max's needs. So, really all mom's do the best they can, and really, that's all you need to worry about.

    And to be honest, I'm of the mind that all kids on some level know this. And that their mom is her own person too and will come to appreciate that she has a life outside their childhood orbit when they get older. I know I do.

  12. After reading all the comments, I just have to say...ditto! You are an amazing mom. And wife. And writer. And everything else. Let that be enough. The guilt is not worth the time you give it.

  13. Ellen, I can say from experience that even if you were a SAHM and spent every moment of the day with Max, you would still feel like you weren't doing enough for him.
    You DO do a lot for your little guy. Every time I see a video of him, I am blown away. He walks so beautifully for a little guy who had bilateral strokes, he's communicating more and more, and most importantly, he's a very happy kid with a bright smile. At the end of the day, that is all due to your hard work.

  14. I guess the feeling never ends...

  15. I am a physical therapist and I have been reading your blog for some time. I have so many parents who don't feel like they are doing enough and I say "you never will". You are the mommy first and everything else second. The mommy gets to cuddle and do things just because and all of that.

    I have printed a few of your blog posts just to help remind myself how much what I say can make a parent feel bad or guilty. Certainly never my intention.

    On a more personal note, I have kids without special powers and I still feel like I don't do enough. Not enough playing or enrichment or cuddling or anything! Some days it just feels like I am in a hamster wheel doing the same thing every day. So keep on loving that Max :)

  16. I agree with Sarah. We can not do everything. I used to try to do everything.

    When Cj was nine months he got EI until he was 3 (SP, OT and PT 3x week). Everyday, the second he got up I would also do therapy with him until he went to bed! The only break I got was when EI was at my home. Then Ryan was born and when he was 6 months (Cj 22 months) we went to Canada 4x's a year to learn ABR. I did 5 hours of manual exercises every day on Cj until he was 5 1/2. I also did some SP, OT and PT when he got home from school on top of ABR (he started SN school at 3).

    I got out of control trying to fix him and I got burnt out! As I watched Ryan develop normaly I slowed down. I looked at Cj 6 and said I LOVE you more than the world and you are HAPPY! I am not going to try to fix you anymore as I have accepted you as you are.

    I know ABR has helped alot and I am glad I did this. But you are right, kids love to play and thats how they learn. His progress is slow but it's there. Now it is time to play more.

    A communication device is my only goal right now, not a million other things.

  17. Ellen, I am a single woman who has no kids, never mind kids with special needs so I have no room to talk, but honestly, I feel that you're doing a great job as Max's mom and you shouldn't feel that you're lacking in any way. Remember that you are only human and can only physically do so much! You need to have some down time for yourself as well. And above all, it doesn't appear to me that Max is lacking for love, which is the most important thing for ANY child!

  18. First of all I love your blog and now that I've read this post I love it and you even more. I also love all the responses. It is so wonderful to know I am not alone in how I feel. What a wonderful little community!

    Nikki, I think it is wonderful that you are thinking about what you say and how it can affect a parent. I think therapists can make our guilt worse sometimes so you being aware of this is fantastic! I wish all therapists were!

  19. You nailed it with today's topic. I go through manic therapy/treatment phases then relaxed phases.

    Special thanks to the commenter who wrote this: "I'm not his therapist, I don't have to be his therapist...I have to be his mom." That is wonderful.

  20. I always think I need to do MORE MORE MORE for my Little Bird. In fact, I often think I need to do as much as I possibly can RIGHT NOW. It's like I feel like if I don't do it NOW, I'll run out of time.

    I'm mostly talking about therapy. I try to fit as much therapy into her life and our world as possible. She literally has at least one therapy every day of the week. Somedays she has three. I know. It's kinda nuts. She's an over-scheduled kid. She really is.

    Right now she's on fire. Seriously amazing. Every therapist is blown away and thrilled. I am more blown away and more thrilled!!

    However, last week LB's Occupational Therapist (one of three) said, "it's gotta be because of your vacation." Whoa. We were away for a week. Away from therapies for a whole week... and she started thriving.

    Needless to say, I'm wondering if less is...more.
    There's definitely a blog post in here for me on this topic!!

  21. I am at the point with my 16-yr-old that I no longer spend every waking moment running from PT to OT to Speech to Hippotherapy to play group to swimming, etc. etc. He gets PT/OT/Speech in school, and I leave it at that. I am a PT myself, so I take care of the odd ends that the school doesn't pick up. I have seen families with special kids who spend every evening, every weekend, every family vacation and every cent of their money chasing new therapies, new doctors, new meds, etc. And to be brutally honest, I'm not sure that these kids are really all that much better for it. When do these kids ever get the chance to just be a kid? I keep Beau involved in Boy Scouts. That is his therapy. He gets to hang out with boys his own age and just be one of the guys. When I take Beau in for his follow-up appts, the doctors always look at me like I'm such a loser because I don't have Beau in PT/OT/Speech outside of school. I just want him to have the highest quality of life possible for him, and I don't think that spending his life in a 24/7 therapy appointment will get him there. Yes, I could do more for him. But sometimes the best thing you can do for your kids, regardless of their ability, is to just be the mom and just let them be kids.

  22. I was out all day and just came home to find this amazingly reassuring collection of comments. Yes, I need to give myself more permission to let go and just let Max be a kid. Yes, Hilary, you are so right: I have to be his MOM, not his therapist.

    Nikki and the other physical therapist who commented here, it is really interesting hearing your take.

    And Felicia, so bluntly and brilliantly put as always: "You can feel like crap or not. I think you should choose 'not.'" I think you need your own talk show!

  23. I think you're in the more Zen place. Really. I'm not completely convinced that making yourself crazy for some incremental gain is really the way to go.

  24. All any of us can do is our best...and to do that we have to be at our best ourselves!! If we didn't do things to keep ourselves healthy, sane and happy - how could we possibly do any of that for our kids?? We all wonder what more we could be doing (even for our "normally" developing children) but for now, our best will have to suffice!

  25. You took the words right out of my mouth.

  26. Thank you Ellen. Thank you for being open and honest. While I too find comfort in others supportive comments on this post - I mostly find comfort in knowing that you and others have the same thoughts some days. I feel less alone.
    Obviously, I wish none of us had to go through these feelings and thoughts - but since we are -your blog has made me feel much more supported - no matter the hour, or situation.
    Thank you!


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