Tuesday, April 1, 2014

Why Your Special Needs Mom Friend Might Be... 'One of THOSE Moms'

I know you have a special needs mom friend.

And I bet you like her, but you're not super close to her, right?  Maybe you feel like she never makes time for you or cancels on you. 

Or maybe you know of a special needs mom & you have no desire to be her friend, well, because she's one of those mom. 

Am I right?

Well, if you're not a special needs mom, you might be wondering, 'what's the big deal with being a special needs mom?' or maybe, 'why is she like THAT?!'

My goal with this post is to clarify a bit on why we (special needs moms) might seem a little off sometimes.

*Disclaimer: I'm not saying special needs moms are either good people or bad people, I'm just hoping to bridge the gap & help everyone understand each other.  


We're busy... really busy!
We spend countless hours at doctors appointments, working with therapists, doing therapy homework with our kids and even just scheduling our appointments.  (no joke, I scheduled 9 appointments for my daughter today)

We are exhausted.  
Emotionally. Physically. Mentally. Etc.
We try to meet everyone of our kid's needs & then spend every possible time with our husbands, so we stay up way too late & wake up way too early.  Besides that, we're trying to keep up with our (extremely busy) sensory seeking children & their busy schedules (see above). 

Our brains are on overdrive 24/7.
This is my personal experience, but I'd bet money that most special needs moms feel similar:  Paige "talks" so fast all day long.  She has a hard time slowing down (in speech & every other aspect in her life).  Add that to an already hard to understand 4 year old with Apraxia & that equals Mooshy Brain Syndrome.

Ever heard of it?

I wish I could say I made it up, but my brain literally diagnosed itself with it months ago.  Nope.  Years ago.

In all reality, though, my brain has trained itself to be constantly on "alert to Paige" at every waking hour.  I have to be ready at a "word's" notice to pay attention to her & try (extra hard) to understand whatever it is she's saying.  It's mentally exhausting. 

We've gone through heartbreaks that are unexplainable.  
Watching your child go through any challenge is hard - that includes special needs diagnosis, symptoms & challenges.  You can read about the day my mommy heart broke here.  I'd go into more detail, but like I said, it is unexplainable.

We can't stop thinking about the diagnosis.
Even though our child's special needs do not define them, our lives still revolve around the diagnosis.  And sometimes it's all we can think about.  

We live a tight schedule for our sakes & our kids' sakes.
Our kids have busy schedules (see below) with lots of therapies, appointments & homework from those appointments.  Besides that, we want to give them a childhood, too.   If we don't schedule it all in, it won't happen, whether that's time for ourselves, play dates for our kids, at home mommy speech therapy,a girls night out, or anything else. 

We need to get out more.  Seriously.
In some cases, we're stuck in the house or doctors offices way more than we should be.  We're with our kids constantly (because finding a babysitter is a whole other post).

It might seem like we're making a mountain out of a mole hill, but chances are, we're not... usually.
It might seem like we're constantly having to stick up for our kids.  Some people don't understand what they (or we) are going through, so if we get offended or make a big deal out of something, please don't take it personally.  We're constantly in 'mamma bear mode' so we can protect our kiddos.  Sometimes it's hard to change out of 'protective mamma bear mode' into 'relax & have fun mode'. 

We appreciate the small things - including small gestures from you!
We appreciate hearing our child say, "I love you" more than we ever thought we would.  We appreciate that phone call from a friend (because it might have been days that we've spoken to an adult outside of our family, doctors or therapists).  We appreciate silence, but we appreciate our kids swearing (because they are talking!).   We appreciate being able to zone out and watch TV uninterrupted because we don't have to use our brain (see Mooshy Brain Syndrome above). 

We are overwhelmed.
There's NO way we can get everything done in the day.  (see below)

We can't figure out how to balance our schedules.
Paige's schedule right now consists of preschool twice a week (with special needs services provided), speech therapy once a week, occupational therapy once a week  & physical therapy once every other week.  On top of her busy schedule, we have homework from each of those appointments, I have to try to fit in time to clean the house, make dinner, pay one on one attention to both of my girls, go grocery shopping, arrange play dates and let my daughter have as normal of a childhood as possible.  I still have no idea how to make it all work.

We get excited about silly little things.
For example, I just found out I won a weighted blanket from Topsy Turvy & Comfort Weighted Blankets and I'm beyond excited.... who gets excited about a blanket for their kid?!  I guess I do.  :)

Money is tight for us.
All of these therapies cost money & add up very quickly.  Often we are able to get grants, but sometimes we can't afford to give our kids all of the help they need... not even with help from the insurance.

Every aspect of our life is affected by the diagnosis.
From walking up stairs, to brushing teeth, to eating, to talking, to sitting still, etc.  That's why it's constantly on our mind (see above).

We've earned half a degree just in experience.
I like to joke (well... half joke) that I've earned half a degree in speech therapy because even though I didn't go to school for it, I've lived it 24/7 for years.  Pretty soon I'll be able to add half a degree in occupational therapy & physical therapy, too! 

We want the best for our children.
No explanation needed.

We're doing the best we can. 
No explanation needed.


Do any of these things sound familiar?


I know we're not perfect... we're far from perfect parents, friends & people.  We have a lot going on in our lives, but we don't forget about you.  We think of our friends often & wish we could get together more.  

It might seem like we're worlds away from you, but I'd be willing to bet we're all a lot more similar than you thought we were.

We're all just trying to be the best mom we can - to be the best mom we know how to be.  

*Disclaimer: I'm not saying special needs moms are either good people or bad people, I'm just hoping to bridge the gap & help everyone understand each other.    


If you liked this, you might also like:
Speech Therapist Recommended Books and Toys

serve-with-kids

Linked up to Dream Team Tuesday Link Share, Fellowship Fridays, Love That Max, The Homemaking Party, How Do You Do It? Parenting Link Up, LDS Link Up Party.

19 comments:

  1. I love this and couldn't have said it better! Thank you!

    ReplyDelete
  2. Thanks for sharing. I'm not sure what "those" moms means, but I feel for ya.

    ReplyDelete
  3. Yes, yes, yes! And so many other things! We hate being the center of attention and getting the constant stares. We don't want conversations to only be about our special needs kiddo OR not at all about our special needs kiddo. We always feel sidelined whether or not others do it to us or we do it to ourselves. We are jealous of "normal" moms and feel uncomfortable around other kids - whether they are babies, younger than our child, the same age, or older. We compare and feel a whole host of bad feelings. We want other moms to see how alike we are and just want to make an effort to be around us.

    ReplyDelete
  4. Thank you I needed to be reminded how it used to be like when my son had therapy all the time. Now he gets it at school and at home. You are right about how others don't understand unless they are going it. I am glad that I have found some groups online that have helped.

    ReplyDelete
  5. Thanks, well written. I understand myself a bit better now.

    ReplyDelete
  6. I love this! Don't know how to fit it all in - truth! Seven therapy appointments a week, four ABA sessions, two mornings of preschool, an older child with an equally busy schedule and heavy homework load that needs a lot of supervision to stay on task, and a job to try and get done around it all, and then there is my house, which is a shining example of what two years of saying "we'll get to it later" results in... it is a lot! Thanks so much for sharing, such a great post.

    ReplyDelete
  7. Great post, Michelle. Thank you.

    ReplyDelete
  8. Yup! Totally with you on all of this. The brain on constant alert thing gets really tiring - but it's gotta be done!
    I do find it hard lately and like I'm letting my friends down, because my son is getting bigger now (the 4 year old, the one that has Apraxia and Autism) but he still can't walk well because he has some problems with his feet, low muscle tone bla bla bla.. and not to mention the lack of danger awareness too! So considering I can't drive its really a nightmare to get out of the house. I can't drag a double buggy up and down stairs to get on the tube train with a heavy 4.5 year old and a 2 year old in it. When they were younger I would push my self to do it but the bigger he gets I just really can't!! So I end up having to cancel on people and sometimes I feel like I only go out for hospital visits and therapy appointments and that's it! I really don't know if other parents truly "get it' if they haven't experienced it. It turns into normal for us after a while, but it is hard

    Anna (In The Playroom)

    ReplyDelete
  9. Thank you. I cant thank you enough

    ReplyDelete
  10. Thank you I could not have said it any better.

    ReplyDelete
  11. That is a lovely post, and so true, and it makes me feel so much better. I need to start using the word 'overwhelmed' a lot more when people ask how I am :) x

    ReplyDelete
  12. This is absolutely brilliant thank you so much. I just hope more non special need moms read ut so they can understand. I felt every single word. Thank you . From faithgift http:// faithgift.wordpress.com

    ReplyDelete
  13. Wonderful and brilliant thank you i felt every word. I truly hope our friends actually understand

    ReplyDelete
  14. Thank you so much for this post. My son has autism and I feel you 100%. Thank you for stepping out there and being so honest for the rest of us. You have inspired me to sit down and blog more specifically about my experience. I did blog about the fear about the years beyond childhood...http://www.thestayathomesoprano.com/2014/01/14/weakness-trust-and-the-power-of-community/

    ReplyDelete
  15. Thank you so much for this post. My son has autism and I feel you 100%. Thank you for stepping out there and being so honest for the rest of us. You have inspired me to sit down and blog more specifically about my experience.
    I have written a post on my blog addressing thereality of the fear about the years beyond childhood...
    http://www.thestayathomesoprano.com/2014/01/14/weakness-trust-and-the-power-of-community/

    ReplyDelete
  16. So true! One thing my non-special needs moms need to keep in mind is that when I'm with my son he is taking my full attention. I'm not ignoring you on purpose, it's just that this kid is a lot of work! Give me and him a moment to relax and get in the groove before you strike up a conversation. And please don't ask me to watch your kid while you go off to do something - I barely have enough hands to watch my own!

    ReplyDelete
  17. Add one more bolded category for THOSE moms above - some of us have no choice but to work full time - on top of all of those things that we do for our special needs children and families. Not complaining - it is a choice (because we like our house and we like to eat), and we make it work. But it is one more thing to add to a very full plate.

    ReplyDelete
  18. Couldn't have said it better myself!

    ReplyDelete
  19. How are her eyes now since the surgeries? You both have the prettiest blue eyes..

    ReplyDelete

I actually really love it when you comment! ;)

Related Posts Plugin for WordPress, Blogger...