Monday, February 16, 2009

Monday Morning Confessional: guilt and kids with special needs

Hope everyone reading this has the day off, it is such a welcome break. We're planning to visit yet another aquarium. Can you have an aquarium addiction? Forget the kids, I think I do.

We had a fun Saturday and Sunday. But, as happens sometimes, come Sunday night I had a nagging feeling that I hadn't done enough for Max. Did I use his Dynavox communication device ENOUGH? Did I play ENOUGH educational games with him and stimulate his brain ENOUGH? Did I get him to use his hands ENOUGH? And even, did I feed him ENOUGH? (He weighs 35 pounds; Sabrina is 45 pounds, per her four-year checkup last week, and the doctor told us to put her on skim milk.).

It's a theme I see running through many blogs about kids with special needs—the guilty feeling that you could always be doing something more for them. Parents in general feel that way these days, I think. It's why we sign the kids up for a kajillion activities. I know four-year-olds taking Japanese (not their parents' native tongue), computer classes, yoga. Sabrina goes to a gym class on Saturdays, and a preschool cooking class and science class during the weekdays. Max gets occupational, speech and physical therapy, at school and at home, along with music therapy. We also take him to a program for kids with special needs on Sunday morning, and I'm looking to find a sport he can play.

I tell myself that I'm doing the best that I can, but sometimes even that seems like not ENOUGH. You know?


  1. Don't blame your self for things you can't control... You sound like your doing enough, and the right thing... Max is certainly not sitting in a wheelchair wasting away. He's a happy smiling little boy, with an outgoing and pro-active mother...

    With an education system that is failing for "normal" kids, and that also fails "special" kids... I think your doing as best any one can do.

    As for a sport? Well... judo! For real... Some great PT too.. Just find the right sensei!!! (Cole says karate) LOL

  2. So true. In mommy school, I'm majoring in guilt. What if I hadn't sat him in front of the tv yesterday? What if I had never introduced candy and cakes to him? What if I stayed at home instead of working? What if we hadn't bought a house but a small flat so I could work half-time? What if we weren't expatriates but lived in a monolingual environment? What if I had married someone with the same culture and language as me? ... but then... I wouldn't have had my son and he wouldn't be who he is.

    It's a never-ending story. I think it's important to find a balance - kids will be happy and wholesome if you are. That means taking time for yourself as a person and not only as a parent.

  3. Boy, can I relate! I also feel very guilty when I see her therapists and expect them to reprimand me for not doing what they told me to work on last week. Thankfully, I think they all understand how crazy our life is, but still. I am worried about feeling guilty about not giving enough time to Isabelle as she gets older since the day is like a circuit of feeding/therapy/activity for Alice. I sometimes want to smack people who say "you really need to take some time for yourself." Yeah, right...

  4. Hey Ellen--No matter what you do, it will NEVER be "enough!" That maternal guilt is present even if your children don't have "special needs" (but then, really, all kids have special needs of some sort, don't they? Some are simply more onerous and intrusive than others, and more of a challenge for the child...).

    Here's the truth of it all--if you are worrying that you haven't done "enough," why, the odds are very good that you're doing MORE than enough--even if you don't think so. In other words, on the spectrum of Magnificent Mommiedom, you're closer to "Mother of the Year" than "Mommie Dearest."

    Look, all you can do is the best you can do. It's doubly hard when your insurance sucks, you can't get the services your children need, and you can't get anyone to give a crap. That's when it gets hard--when you're stuck in that "Too poor to paint/too proud to whitewash" club. Yes, you can afford insurance, only if you go without cable TV and other things that normal families have. Sometimes it's hard not to think it's better to be very poor--the safety net in some places seems firmer and stronger the less you have.

    Anyway, I digress. All you can do is the best you can do. But as far as ENOUGH....the one thing our kids will never get more than enough of is love, love, love--so we've just got to keep that a-coming!

    Hang in there, and banish that guilt--think of it as a dirty diaper, and toss it! You don't need to be carrying THAT around, now, do you?

  5. Yes! I completely understand. I will say not to feel guilty - you are an amazing mom with two amazing kids. Max has come so far because of you. However, I know that no matter what, you're going to feel guilty - that's what we moms do.
    I also wonder if I'm doing enough for Daniel. He gets PT and OT at a really good rehab hospital in Boston. I also work with him at home on a regular basis. He has had constraint induced therapy (we also do it at home as part of his maintenance program) 2 1/2 rounds of intensive suit therapy (he'll have his third full round in April, and a one - week session in June), and I've tried to get him everything I can. But still, I feel like it's not enough. I have literally woken up in the middle of the night with a nagging feeling that Daniel needs more than I'm giving him.
    As for a sport, are there any programs in your area for kids with developmental differences? Would you rather that he be in a mainstream group? I've heard that a lot of kids with CP have great success with martial arts. Soccer might also be good, as it sounds like Max has pretty good use of his legs. Yoga is also another option, and one that Daniel enjoys.
    If you wanted to go another route, maybe he could try drums. It's great exercise for tight muscles and also very good for the brain. We actually got Daniel a little drum set when he was a year old, and he loves playing. We also came across an amazing drummer from Australia who has quad CP and now teaches kids with mobility impairment to play. Of course, the rest of the family will have to invest in some good ear plugs!

  6. thank you sooo much for this post. I can relate 100%. It comes in waves for me; we get in a good routine and then if something throws the routine out .... I start the running list in my head of "have I done enough, what else can we do..what if this what if that... " Then I go through a google resarch phase to find new activities to add to our life to ensure an "enriched" environment.. this happens probably once a month..then we end up getting back on routine and the guilt subsides for a bit. But I think all you have to do is look at your childs face..see there huge smiles and give yourself a big pat on the back..I see in the pictures of Max and Sabrina that they are very happy children..your a great Mom Ellen and it shows..even through the tiny window into your life on blogland. :)

  7. The biggest guilt hurdle I had to get over was wondering if I did something to cause disabilities. Was it that diet coke I drank in the third trimester? The summer I couldn't get enough slurpees? Did I miss taking any of my prenatal vitamins?

    As an adoptee, I had no family medical history. I was healthy enough, but who the heck knew what was lurking in my gene pool. Should I have had genetic testing before having babies?

    Was God punishing me because I was a crappy kid? Did I ever make fun of a disabled peer and if I did was God smacking me upside the head and saying "see how YOU like it!"?

    What I'm trying to say is that the list goes on and on and on if you let it. At some point you have to let go and expend your energy more productively (I'm not talking about you specifically, but in a general sense). Took a lot of work for me to figure that one out. LOL

    You're a good and concientious parent. You're doing the best you can. Nobody will ever be perfect.

    Don't let the guilts grab you. ;-)


  8. I think that you are an incredible mother and am SO impressed by all that you do for your children. They are very blessed to have a mother who is so actively involved in looking for the newest and best things for their development. You definitely have nothing to feel guilty about. Max is an amazing kid, and you have given him every opportunity possible. It's so wonderful to read your blog and learn about all you are doing.

  9. I deal with it all the time--especially now that I'm on bedrest--the days that we are here alone (like today) I feel like I'm teaching him to just lay around and watch TV for entertainment. I keep reminding him of why we can't go outside, go to the store, etc., but a five year old just doesn't care--LET'S PLAY! is what he's thinking!

  10. Yeah I hear you. I never feel like I do enough for Bennett and sometimes the guilt overwhelms me. I've been wanting to try one particular activity all weekend and haven't and now it's Monday night and I feel horrible. It's funny though I never think that about other parents with special needs. I'm always amazed with all the things parents do with their kids - you included! - and NEVER think that they should be doing more. I think we're just so much harder on ourselves. I think the fact that we worry about this so much shows how much we care for our kids and that ultimately we're doing a pretty good job.

  11. I hear you, too. I always experience the guilt at our weekly therapies (OT, PT, Speech) when they ask how we did on our "homework". I can't keep up with all the assignments! I want there to be hours in the day that aren't scheduled to meet a goal, other than the goal of being a kid with a fun childhood! It's a balancing act for sure.

  12. Thank you for the kind words, and the reassurances that so many of us feel that way. I do generally think I'm a good mom! And yes, Christine, my kids are happy, for that I am thankful. I think part of the guilt lies in that stereotypical working mom guilt, which is hyper-intensified when you have a kid with special needs. Felicia, I adore what you said about how the one thing our kids can never get enough of is love. That, my kids get in droves, as I know all of yours do.

    Joanna and Rich, those are good ideas! I am going to look into both judo and soccer (Max has tried soccer, not so in love with it but maybe if it were a more regular activity he'd be into it). I've heard about some programs in my area, and I'm trying to find a good one for Max.

    Hetha, I neglected to mention the homework guilt. Ack!

    Attila (have I ever told you how much I love your name?), the one thing I don't beat myself up about is what caused Max's stroke, because in the end it was determined that it was a lack of oxygen at birth. I am sorry you've wondered if you somehow caused your son's disabilities, I can only imagine what kind of hell that was. I'm glad you pulled through, you have an amazingly strong spirit (and one wicked sense of humor)!

    Barbara and Felicia, I know you are right, the fact that we worry so much says that we are good mothers! I am going to keep that in mind‚ and do my best to keep the guilt from bubbling up. It's not as bad as it used to be.

  13. We had a bit of a fight here about the same thing today. I due to my small stature cannot complete all of Elizabeth's Medek exercises and hubby needs coercion to get it done. All week a nagging in my head was telling me that we had not done enough of her Medek. I digress hubby and I had a blow out where he told me I should relax and wasn't swimming and going to the park enough in a day and Elizabeth should be doing things that other kids her age do. He is right that she should be doing things but the reality is if we don't work on it she will be left behind and unable to keep up. It is such a fine line and it eats at me all the time.

  14. Oh my, you hit the nail right on the head. Guilt is always bearing weight on my shoulders. All the could haves and should haves dones. I used to beat myself up constantly, but I've had enough people to help remind me that I'm only human. I can't possibly do EVERYTHING. Even so, it's still hard to let go of the guilt. We're talking about our kids here. We just want to give them the world, you know?

  15. I failed to mention what a little heart breaker Max is! Good gracy, it's so handsome!

  16. Judas, why can't there be an edit option for comments? The last line meant to read like this: Good gravy, he's so handsome!

  17. Gotta love the guilt. Yes, I feel it all of the time. Like the others who have posted, I wonder if I do the right thing by working outside of the home, I wonder if he wears his brace enough, I wonder if we do not get him out often enough, I wonder if I get him out too often. I could go on and on.

    You are an amazing Mom to Max and you should not feel guilty about what you do.

    I was talking to my Mom one night about how I felt guilt over the fact that our nighttime routine involves watching Baby Einstein while cuddling *gasp.* My Mom said it was better than the soaps that she watched with me until I was 3 years old. I decided that I turned out OK, so a half hour of Baby Einstein while being snuggled was not the end of the world :)

  18. Ellen~ As you may know, that is a subject that I have been blogging about recently. How can I ever measure up to other moms, to myself. How can I ever be the best mom possible under incredible odds... and maybe I should never have become a mother to begin with because I don't feel like I'm doing a good job.

    The reality is that you ARE doing a terrific job. You have your children involved in many things that are stimulated both of them and are appropriate for both of them. In truth, you can't ADD more because too much can have a negative effect - something we have experienced. They get tired and worn out just as we do.

    We all have those nagging thoughts. They'll go away. Then they'll return. 'Tis the nature of the beast!

    (BTW-the link still goes to an old feed. Everyone is having luck with as the link to the site versus the feed. See if that works. THANKS!)

  19. This is so true! That feeling of doing enough/not doing enough. The mommy guilt! I do feel guilty a lot when I'm not doing this or that with Kayla, but there are times I don't want to make everything about therapy or working on this or that...and just letting her do what she wants and be a kid! Now to find the balance!


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...