Saturday, May 11, 2013

Mother's Day, mom fails and boxtops - Oh My!

Ahhhhh... Mother's Day that one day a year that is set aside to force our children to tell us how much they love us and how awesome we are! The more beautiful, creative, impressive the message the better! Those spectacular expressions from the children that let you know how much their mom deserves pampered, a day off, a make over, pictures, jewelry, a vacation etc... those are the messages we want to see on Mother's Day, right?  Riiiiiiight.   I mean that's what we see in the media,  those are the stories that make the TV, newspaper and magazines, those are the ones that win contests, kids that express how incredible their mom is.

I could do that.  I could easily write a blog, enter a contest, submit a newspaper or magazine article on how awesome my mom is.  Because she is and she is deserving of it (seriously, she survived raising ME  - that alone makes her deserving and awesome) but also, because I can.  I can use my words both verbally and written.  I can express my thoughts and feelings, usually with ease. 

My mom and I, July 2012
Not everyone can though.  So what about those moms?  The moms of children who can't talk well or at all?  The moms of children who can't write out their feelings?  Are they less deserving of pampering, a day off, a make over, pictures, jewelry, etc...because their children can't express their thoughts?

I've watched many of these contests evolve in the 14 years I've been a mom, mostly in the 10 years that I've been part of the Fragile X world and really noticed how exclusive these contests typically are.

I have seen incredible, heartfelt and truthful nominations beautifully written by husbands, siblings and friends on behalf a child with special needs submitted to contests about how incredible the mother is ... and I've read the rejection/disqualification letters from contest organizers supporting their rules that the nominations have to come from the child themselves to qualify not someone speaking for the child and guessing their feelings.

While I'm happy to see this is changing and many contests offer the option of anyone nominating a mom, there are still those who are set that if it's not from the child, it doesn't count.  Those are typically the ones with the biggest, most elaborate prizes.  A package deal for mom with a make over, photo shoot, flowers, dinner out, massage, pedicure, manicure, jewelry, and mini getaway vacation.  The best prizes, right?

I know what it's like to be on both sides of the abilities of children.  I have a son who couldn't tell me at all until he was 10 1/2 that he loved me unless he was prompted and repeating my words. At 14, he can't tell you why his mom is awesome or why he loves me.  I also have a daughter who is 10 who can, and always has been able to, express herself both verbally and in writing.  She, too, has Fragile X and wouldn't do well put on the spot but would still be capable of providing a lovely, from the heart, answer. (that would also include how when she gets sick and misses something important it's my fault for jinxing her.. which I do just by speaking!)

My babies :-)
While I think every mom doubts herself and the job she is doing raising her children from time to time, the moms of children with special needs tend to doubt themselves even more.  Maybe it's because many of our children can't tell us how awesome we are.  Maybe it's because we have so many life impacting decisions to make.  Maybe it's because we spend so much time having to fight for therapies, services, insurance and to be a part of something that we are left questioning why these fights still occur. I mean, if we are right... why is it such a fight?  All things that make us doubt our parenting.

Then there are the "little things" that make us feel like we fail.  Like boxtops. The only reason Allison has box tops to send to school is because my mom saves them for her. Yes, it would only take 3 seconds for me to tear the box apart to get it off, those very 3 seconds I am also typically doing at least 8 other things.  Could I add one more and rip the damn thing off?  Yes.  Do I? Not usually.  Do I feel like the worst, most failure of a mom ever - especially when on recycling day I see the recycling guy take the time to tear them off as he checks what is dumped into the truck?  Oh, very much so.

I don't have the most organized house (and by that I mean not at all organized, except for maybe Parker's closet where I feel the need to organize his shirts by color on those rare occasions that the shirts actually get hung up), I am not the greatest housekeeper, I never get pictures into photo albums (although I do have boxes, SD cards and external hard drives full of them), I've never made a scrapbook of their lives, I'm typically running late, most days I'm lucky if I can squeeze in time for a shower, I let my children eat in front of the TV, I have a limited menu of foods I can cook, sometimes I mow over the dog poop in the yard because I don't have time (or am not in the mood) to pick it up, I cry through even the best IEP meetings, I don't always have the answers... I really could go on with this list for quite awhile, but I think you get it... I have reasons to feel like I am failing my children, did I mention I don't cut out the damn box tops?!!?!

I can also tell you why I am a good mom, so can my family and friends.  Perfect? No.  Good. Yes.  But, I won't and neither will Parker... because he can't.

He also can't tell me not to feel like I sometimes fail.  He can't say that I don't have to have the laundry done or a shower or be decked out in pretty clothes with my hair and make up done for him to be proud of and love me.  He can't say that the things that make me feel like I fail, don't matter.  Not verbally.  But his eyes, even though they can't always look at me, do. They tell me he loves me, unconditionally, regardless.  And that, that is what matters.

This Mother's day I want to give special recognition to every special needs parent who has a non verbal or limitedly verbal child, or child who can't put their words into a powerful message, a child who can't enter a contest to tell you how awesome you are.  And yes, awesome you are!

Special needs moms live different lives.  We often live in two different worlds.  The special needs world and the outside world.  We do our best to fit in amongst our typical family and friends, in our local communities to find our place and feel like we belong, even at the grocery store.  We do our best to help guide each other through the trials and challenges of the special needs communities, too.  Sometimes, we try to live in both of those worlds at the same time and bring them together.

We have a greater appreciation for the real "little things", celebrating the "Inchstones" (thanks Paula and Melissa for that!) as much as the "milestones".  We know what it's like to see our children not do things by the charts, making those first steps taken, words (even if only understood by us), signs, or attempts at communication - no matter how late they come much more treasured, appreciated and celebrated.  The things like seeing our kids dress themselves, make it through the night without an accident, attempt to fix their own bowl of cereal, or spend 15 minutes trying to translate their actions into what it is they are trying to tell us more important than the 3 seconds it would take to rip the box top off .

We often know Special Education law better than the school districts, how to correctly code therapies so the insurance will cover them better than the people on the other end of phone, how to hide our emotions that our children feed off of so our children can have better days, how to smile and face the world when inside we are scared of what that world holds for our children.  We know how to fight and when to concede.  We know the top specialists, programs, therapies... the most recent research, the current legislation that needs passed, how to advocate...

We also know how to survive taking a 14 year old into the women's public bathroom when he needs to poo because you can't walk into the men's room to wipe his bottom or how to stand anxiously outside the men's room door waiting, watching every man who walks in and out and praying they aren't someone evil making a 2 minute independent trip for our son's to pee feel like 2 hours.  We know how to survive a meltdown in the grocery store, not just helping our children through but also educating the people who comment, stare and criticize us and our children.  We know how it feels for parents of typical children, family or well intentioned friends who have no idea what it's like to raise a special needs child tell us how we are doing it wrong and ways to do it better.  We know how it feels to have our children excluded, made fun of and mocked.  We know heartache, pain and fear.

We are the best bottom wipers, catch puke in your handers, smile instead of telling off peoplers, fight for what's righters that ever graced the earth.  We stronger than we ever dreamed possible.  We are hopeful.  We are proud.  We are... amazing.

We know by the hugs, the kisses, the flapping, the gaze of the eye, the smiles that we are loved by our children.  We know by the successes, we know by the simple fact that we survived another day that we have done the right thing, even when the right thing is learning from a mistake.

While the moms I know of special needs would love and deserve an awesome prize package of the "best" prizes (with a make over, photo shoot, flowers, dinner out, massage, pedicure, manicure, jewelry, and mini getaway vacation...etc) what they'd really love this Mother's day is to hear their child's voice, to have a successful trip out of the house with their child without a meltdown or disproving stare, a dinner together without anyone throwing up, maybe even a cure.

Truthfully, the best "prizes" in life are ones you can't win but the ones that call you "Mom", "Grandma" or "Aunt" in whatever way they can.

We are, just like our friends of typical children, amazing moms.  Please, don't ever doubt that just because you feel like you are failing or because your child can't express that to you, or because you didn't take 3 seconds to rip off the box top.  We see it in you, your children see it in you, we know... even if you don't get the box tops ripped off the box.  You're doing a great job.  Take a deep breath in... and out... now, quickly - go see who's yelling for you now, your break is over!

Happy Mother's Day :-)

To learn more about Fragile X Syndrome please visit the National Fragile X Foundation's website.
*Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of Autism.


  1. Thank you for this...simply beautiful and true!
    Happy mother's day!!!

    1. Thank you Ann, I am glad you enjoyed it! I hope you had a wonderful Mothers' Day!