Tuesday, July 16, 2013

18 things special needs moms shouldn't feel guilty about


1. Not doing all of the exercises the therapists recommend.
Just not possible, even if you did nothing but therapy all day long. Ask your child's therapists to prioritize things for you—if possible, on a conference call. Encourage them to share ideas for making everyday activities therapeutic, from bicycling your child's legs as you change a diaper to making up funny noises on car rides. And then? Do your best and try not to sweat the rest. Loving your child up is plenty therapeutic right there.

2. Accidentally leaving the medication/EpiPen/other critical lifesaving treatment at home. Reminder: You are a mother of the human variety. It happens.

3. Thinking that you "caused" your child's disabilities.
You play and replay in your mind all the suspects from your pregnancy—you ate a piece of luncheon meat, tripped and fell, slept on your back, didn't get a C-section soon enough, freakout etc. Seek reassurance from your doctor, and if your doctor isn't the reassuring type find one who is. Also, get therapy if the guilt feels overwhelming. You have enough to deal with; beating yourself up won't do you or your child any good.

4. Girls night out!
If anyone deserves some fun, it is you.

5. Getting a mani-pedi.
If anyone deserves time to take care of her poor neglected nails, it is also you.

6. Feeling like you put your husband on the back burner.
So you forgot his name the other day. OK, maybe things aren't that bad, but given how consuming a child's special needs can be, some days there may not be a lot left of you. Date nights help. So does scheduling regular weekly times to discuss household and financial matters, so that these things don't consume your date nights. And never underestimate the power of little favors. (Use your imagination.)

7. Feeding your child junk food.
In the wise words of one mom, "No kid is going to die from an occasional Ho-Ho."

8. Losing it with the insurance company supervisor.
True, it's not the manager's fault the insurance company hasn't reimbursed you for claims since the Clinton administration—and it's not your fault that after 27-phone-calls-but-who's-counting, you finally erupt like Mt. Vesuvius. (See: "mother of the human variety.")

9. Having a job.
Like we have a choice about earning income for our families.

10. Giving up on redirecting/reminding your child.
Whether it's your child's persistent banging of knees against the kitchen table or humming, at times you run out of strength to say "Stop!" Go on, flee to another room or let your significant other deal. You can't always be on.

11. Feeling perturbed at family members for not getting it. 
It's genuinely maddening (and deeply upsetting) when they say things like "Oh, she'll grow out of it!" and, worse, "There's nothing wrong with her!"

12. Letting your kid zone out to the TV/iPad.
Sure, you do not want them glued to the screens for hours on end every single day of the week, but if on occasion you need a break or time with your spouse and your child is perfectly content to explore YouTube or watch Doc McStuffins, so be it.

13. Spilling to your friends.
If they are good friends, they'll be there to listen to you angst about your child and give you perspective, just as you are there for them. If nothing else, look at it this way: You are giving them valuable perspective on how much less complicated their own parenthood is in comparison.

14. Writing about your child with special needs.
It can be both amazingly cathartic for you and helpful to others. The limits are yours to set; it helps to consider whether your child will ever be mortified about anything he reads years from now. Or whether he'd sue you.

15. Getting bored during floor play.
It happens. Gasp!

16. Not being able to do much charity and volunteer work.
Having young kids with special needs pretty much takes all you've got to give. Maybe you can't get to the soup kitchen like you used to, but you can still donate goods, money or social media shares.

17. Accepting kindnesses from strangers.
If it's going to make your child more content and your day easier, why feel guilty?

18. Wishing your child didn't have special needs.
If there were a special needs mom who hasn't ever thought this, well, she is definitely no longer with us because she has been elevated to sainthood.

35 comments:

  1. thank you - this is awesome! Kristen

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  2. I think my mom feels guilty about all of the about but especially about "causing" my CP that's why she almost never says no to me she would buy me the moon if she could all to make up for me have CP which is ridiculous because she did nothing to cause my CP.

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    1. You clearly have a wonderful mom, Nisha, because she raised an awesome daughter.

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  3. haha...i like the last one...she has been elevated to sainthood...I am not a special needs mom but I feel i still can relate because even it feels too much to handle my one 2 year old..

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    1. Well, two-year-olds ARE a handful! :)

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  4. Oh my heavens, THANK YOU! Especially number one! I can't count how many times I've laid in bed feeling terrible because I took my son on a walk in his stroller and he's "just sitting there" instead of stretching his legs out or making him army crawl for an extra 15 minutes. Or felt sick because I'm just sure that the whiskey I had before I realized I was pregnant must have caused all of this...

    Best. List. Ever. I'm sharing it, stat.

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  5. I still feel guilty for Sarah's issues. I do blame myself and continue to question what could I have done differently.

    With permission, I'd like to reblog some of these...

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    1. By all means, Stephanie, pick a few and spread the good word.

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  6. Oh no! I felt that twinge of guilt when I read "every day" and "on occasion" and then started mentally calculating how much screen time I have been allowing this summer. What if the screen time is in the car between therapy appts? Is that okay? Or every day while I make lunch and/or dinner after a full day of outside fun?

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    1. OK, which one of us hasn't let her kids watch TV while doing meal prep or zombie out to a DVD during car rides? Some weekends Max wakes up and checks out YouTube clips of Cars 2 for an hour, then he watches a DVD (he's obsessed with the Herbie movies), and then he insists we take it in the car so he watches it too when we're driving around. It's on weekends only, and we limit his TV time otherwise during the week. It's all about balance, right? Also: Billie, you are one of the most awesome moms I know who I've never actually met.

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  7. Thanks for this, Ellen.

    I often blame myself for my son's special needs. I've been made to feel guilty more times than I can count for wishing that he didn't have any sort of special needs. I've never really understood that- why wouldn't I wish my child's life were easier?

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    1. I know, Shell. I know. We moms are just too hard on ourselves as it is, and it's that much worse when others tell us not to feel the things we do.

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  8. I can agree with the saying no part I have given my daughter brandi everything that she wants and now that she is 10 and stronger its harder to deal with, but I vowed to lay done the rules and slowly she is getting it and it seems that I have gained more respect from her just like any normal child. the need rules and bondries with out it well, I guess that means lack of love and respect on both sides and a child who will take the wrong path. which I am doing my best to prevent...God gave me a very special challenge with her and I love it, wouldn't trade her for the world

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    1. You sure are on the right track. If you have a special needs child and you dont stop the pinching, bitting, kicking etc.. early on in their life when they get older and attend school other kids are not going to want to be around them because of the gressive streak they now have. So many people look at our kids who are in wheelchairs and have CP and they automatically think they have a low IQ and dont understand, well my son is not verbal but he understands everything you say to him. He defiantely knows the word NO. He is in high school and is loved by so many of the kids and staff in school. He even was asked to the prom by a " typical student"!

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  9. I really loved this thoughtfully written post. I recently just discovered your blog and blogs in general. It is great to read something I can relate to. My son has a rare skin condition that he was born with which causes him to have a visual difference as well as places him at risk for neurological issues and skin cancer. We are blessed that aside from his skin he is healthy so far. Still, we have a lot on our plate and at times I struggle with things you wrote about. Thank you for writing that.

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    1. You are welcome. No matter what our kids' diagnoses, we all sure have a lot in common.

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  10. Thank you so much for this post! I needed it!

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  11. My boys watch a movie/TV/iPad every day at 4pm for 2 hours while I clean the house and make dinner. It is the only way I can get anything done and I don't feel one ounce of guilt about it :-). Thanks for the great list Ellen!

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  12. Ellen, have you been reading my mind? I'm "guilty" of every single thing on your list!

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    1. No, my ESP has been on the blink since 2009. :)

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  13. This so needed for families of special needs kids. I am just the grandmother but I have felt so many of these things when I am the one providing a short respite for my son and daughter in law. A little more help for Dads please - they are part of the dynamic as well.

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    1. Yes, Dads deserve major props as well, ditto for the grandparents! So, props to you, PJ!

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  14. This may sound odd but I am a mother of a special needs boy and it drives me nuts when people say * Oh, your such a good mom, he is so lucky to have you, you take such good care of him..blahh...blahh,,,blahh. First of all, I would take care of him the same way if he were NOT special needs and secondly, its not that I am such a great mom, I am just a mom doing what moms should do, take good care of their kids. Unfortunatley there are too many moms (and dads) that dont care for these kids like they should so it makes us, in other peoples eyes look great. Bottom line we are just doing what moms are suppose to do.

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    1. Anon, I'm actually putting up a post about that next week. I totally relate; I get that in real life and sometimes here on the blog, too, and it also bothers me. I know people mean well but, just like you said, I'm just caring for my son, who happens to need a little more help than other kids.

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  15. I love honesty of your post Ellen. All true…There are really good points which are shared and felt by many parents. When it is read, it gives the idea that “You are not alone.” Also, it has many beneficial way of looking. I like the idea that you generally mentioned that life is going on with the child, don’t leave your life just be normal and continue what you have. It is reality. As a parent, if you enjoy with your life, you will be energetic to help your child. I really appreciate your advocacy about your child and all these points and your list show that you experienced a lot! I am not a mom yet, but I am an advocate for children with special needs I really feel what you said and I agree that it is really good to face everything related to your son to help him more.
    I am currently an international graduate student in Special Education and I just started to learn more about children with special needs deeply. Your post gives me many good points to think on them. It is really impressive perspective you have and it makes me happy to see that you are on of the mothers who just focus on her child and aware of everything related to the child.
    I have met some families who have a child with disability and they avoid talking about their children. Some of them just want to ignore the disability and go on their lives as –normal- as they can. However, I think that disability is part of normality in their life and avoid from disability is actual burden. Therefore, I have always questioned that why they don’t just talk about anything about their child and share what they think directly with others, so you are really good real example for me doing this.
    I know one family who has a child with Cerebral Palsy, I have been spending time with the child for almost one year voluntarily. The child, Aleyna is my 7 year friend ☺ We talk a lot and I really enjoy listening her. Honestly, I should say that I felt sorry for her when we first met. However, her mother, Esin taught me a lot about parent advocacy. We talked a lot while she was riding Aleyna’s wheel chair. She dedicated her life to Aleyna and she informed me about Aleyna’s limitations and operations. I was surprised that how she was open to talk about Aleyna’s situation and limitations. We read her IEP’s together. Then I just believed that Aleyna has many good things in her and she can really achieve many things. My attitudes changed and I don’t feel sorry for her anymore and I just focused on helping Aleyna in anyway I can.
    Lastly, I would like to say that being an advocate for the child as a parent is really important. It gives message to everybody who meets with the child that I am the mother of that child who has dreams and I am here to help her to reach her actual potential and I am proud of her! Thank you for the great list Ellen :)

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  16. http://faithgift.blogspot.com/2013/07/anticipation.html

    My Blog is faithgift please read and share it is for parents of special need kids and a moms story of the daily stuggles and triumphs that are real and honest

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  17. Getting bored during floor play.
    It happens. Gasp! HA!

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  18. I can just say thank you my baby is 19 months and ìm just starting to adapt to all this.So difficult. I'm from Argentina.Great blog!

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  19. Seriously....thanks for this. I'm just recently finding I feel so guilty for what I don't do with my special needs kids. Totally needed this today. Love your blog!!!

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Thanks for sharing!