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Hello and good evening to all you strong and amazing parents out there and thanks for stopping by.  I’ve been hitting up some of the special needs groups on Facebook lately and reading all the concerns parents are looking for help with.  Being a special needs parent is awesome, but there have been some difficult posts from very strong parents. Two things always happen to me when I spend some time reading other family’s stories.  1) I want to help, but am at a loss as to how and 2) that my family is very fortunate to have such a great support system in place.

That first one I should be an expert at, right?  That’s what I blog about!  The reality is, this blog is more about how you, as the parent, can be strong while still being you.  A lot of the time as parents we tend to lose who we once were.  Sometimes it’s growing into more mature adults, but at least for me, I feel like I lost my identity.

Riley in the NICUYou become this person who now has the responsibility to raise a little human.  We had this discussion here at the office the other day, there aren’t required classes to take to raise a child.  There isn’t an instruction manual that you take with you when you leave the hospital, special needs or not.  We’re expected to just make it happen.

With that said, yes, I know there are classes you can take, we took a parenting class before my son was born.  What I got out of that class was here are all the ways your child could die.  Joking aside, we did get a few good things out of the

class, but it did not prepare me for being a mother.  It’s like getting your first gig out of college and realizing college didn’t prepare you for the real world.  Except there’s this tiny person relying on you and you can’t fail.

No pressure, right?

How Do You Help?

So back to those two things that happen when I read other’s stories.  How do you help others?  No really, how do you help?  I started this blog initially to help myself, but then I realized telling my story and my shortcomings actually help others.  Hopefully, it helps you realize that you aren’t alone in this, that someone else out there is also struggling but more importantly overcoming (most days).

Our strength in our weakest moments helps define who we are.  Sometimes that strength is admitting to yourself that you can’t do this alone.  I’m stubborn, strong-willed, and hate admitting I need help, that I’m not capable. If I had never admitted I needed and asked for help, I probably wouldn’t be in a very good place mentally, even though that’s in question from time to time (just ask my husband).

Then I see people in these groups that I just want to help but have no idea how to help.  If they’re asking for advice, I gladly help when I can.  It just hurts to see so many families struggling to get their children what they need.  How do you guide them, help them walk their path?

So many questions are being asked about SSI, healthcare, where to take their kids for help.  I just want to answer questions, all the time, but I don’t have the answers.  I have experiences, my own trials, and tribulations that got me where I am, and sometimes that’s just not enough.

Questions about services from the government are beyond my expertise, I don’t qualify for anything.  Tips and tricks for children who act out violently, I’m useless, my little girl is non-verbal, non-mobile and pretty quiet 98% of the time.  I have no experience with autism, behavioral problems (other than my 4-year-old being a stubborn 4-year-old), or other disabilities other than what my daughter has. What can I possibly do to help, ease some of the frustration or depression?

Make the Difference Where You Can

So how can I help?  Sometimes I feel helpless and like I don’t make a difference.  Then I have a friend say she knows a parent whose wife left him with their 3-year-old son with autism, and nothing else.  This family needs help, and this I can help with.  We were able to donate a box full of clothes, a couple packages of diapers, and lots of toys.

Sometimes it doesn’t matter what small act you can do, just do whatever you can.

More Fortunate Than the Other Unfortunate

When you’re the more fortunate of the unfortunate, you’re just in a weird situation.   Do you know how many times people tell me that Riley looks so normal, that if they didn’t know her they wouldn’t know she was disabled?

She is disabled.  I’m not a fan of that word, but it is what it is.  She’s medically fragile.  Riley has seizures multiple times a day.  She can’t hold her head up, she has no control over her extremities, she’s non-verbal, can’t sit up on her own, can’t even roll over.  Yet, when she sleeps, she looks like an angel.  No joke, this girl is gorgeous, and I’m not saying that because she’s mine.

Then there are times when I don’t tell people about her disabilities.  It’s that part of me that doesn’t want to have that awkward conversation.  When you blindside someone with that kind of information, they don’t know how to react.  I don’t blame them.  I also don’t want to make anyone feel out of their comfort zone for something that’s perfectly comfortable to me.

It’s also not that I don’t want to talk about her, well maybe it is a little bit.  Honestly, if we’re sitting somewhere waiting in public, people ask us all the time in very polite ways, what’s wrong with her.  She’s in a wheelchair, so it’s pretty obvious there’s something off.  They’re prepared, they see it, they can expect a not so positive response.

One time, after I had brought my kids into the office for the first time after I changed positions, I was introducing the family to the team.  My immediate team knew the situation, most of them had gone to our wedding, we worked previously together.  One of the lady’s, who I have much respect for, had no clue about our family history and, no joke, blurted out “What’s wrong with her?”  I was literally taken aback. She was surprised.  I was surprised by her question.  It. Was. Awkward.

The Forever Infant

Not everyone can handle the news of our forever infant.  Some days it’s hard to admit that my little angel isn’t going to be more mentally than she is today.  I can still remember hearing those words from the doctor the day she was born.  I don’t remember much after that, I shut off after that.

But here we are, almost 4 years later.  My warrior is probably about at the level of a 3 to 4-month-old.  Though, she does eat from a spoon, with a lot of assistance.

I totally understand where all the depression comes from in other families.  All the things we think about as parents.  Most families have the mindset that they raise their children for 18 years, and then you send them out into the world.  May it be for college, a job, technical school, whatever it may be.  They’re still your child, you’ll still be there for them, but they’re finding their own voice, starting their own lives.

As a parent with a child with special needs, we need to plan for caring for our child for the rest of our lives and try to figure out what we can do while living to prepare for the rest of our children’s life after we’re gone.  How do we ensure that they’ll be taken care of when we’re not here to see it?

How Do You Do What You Do?

Those are heavy burdens and wear on a parent.  The question I continually get asked: “How do you do what you do?”  My answer: “You just do.”

What’s the alternative?  You do what you can.  It’s the best that you can do.  Some days are hard, but there are always good days.  Life is filled with mountains and valleys.  Keep your head up and enjoy the view.  I’ve never seen a mountain or a valley that didn’t have beautiful surprises along the way.

If you didn’t walk up that mountain, you may have never seen the gorgeous waterfall with blooming flowers.  Enjoy your time in the valley’s as this is your time to regain your strength.  Reflect on the mountain journey and mentally prepare for the next climb.

You may feel alone, defeated, exhausted and like a crazy mama some days, but here you’ll find support.  Stick around, there’s more to come.  We got this.  Welcome to the clan.

Sara Signature


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Sara
Sara is a mother of two, wife and full-time employee. She's also a parent of a child with special needs.

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