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You’ll Love Them No Matter What

Dear Expecting Parents:

Congratulations!  You’ll expecting a baby – this is the biggest thing that’s ever going to happen to you!
Do you know what you’re having yet?  I bet you’ve said (or heard) this one: 
“We don’t care if it’s a boy or a girl, we just want a healthy baby!” 

We’ve all been there, we’ve all said it.  Our intentions are completely harmless – and in fact, we mean that we will love our child no matter what, we don’t care about their sex.  
…but can I let you in on a little secret?  Those of us who lovingly parent children who have special needs, do you know what we hear when someone says that?
“I will love my baby if it’s a boy or a girl.  I just hope there’s nothing “wrong” with my baby!”
….So what? You aren’t gonna love it if it’s “unhealthy??”
Will you love him if he only has eight fingers?
Will you love him if he has a congenital heart defect?
Will you love her if she has a chromosomal diagnosis like Down Syndrome?
Will you love him if he has a developmental disability like autism?

Of course you will!
And no one means that they wouldn’t love their child when they say this.  Parents aren’t saying, “I’ll only love my baby if he’s absolutely perfect in every single way.”  
The thing is though, most people just expect a “healthy” baby.  No one is really planning on having a baby with a birth defect or a diagnosis…but it could happen.
The thing is, this is your baby.  
You will love him whether he’s cute or ugly.  
You will love him if he’s the smartest kid in the class, or if he has the lowest IQ in the whole county. 
You will love her if she has a perfectly functioning heart or if she is born with a broken heart and needs some surgeries to correct it. 
You will love her if she talks up at storm at 18 months old, or you’ll love her if she never speaks a word her whole life.
You will love him if he never has an ear infection in his life, or you’ll love him if he’s chronically ill.
This is your baby.  Ultimately, it won’t matter what he or she does or doesn’t have, can or can’t do.  It’s your baby, and you love them because they’re perfect just as they are. 
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Everybody Has a Purpose

A couple of weeks ago, I got to spend the week at the Pittsburgh AAC Language Seminar Series (PALSS).  We spent two and half days learning about Minspeak, working with Prentke Romich AAC devices, and meeting other professionals within the AAC world.  I thoroughly enjoyed my time there, and highly recommend it to both professionals and parents.

As part of the seminar, we had the privilege of speaking with some adult AAC users.  I shared a documentary on my Facebook page last week called, “Only God Could Hear Me.”  We were able to meet Jennifer, and we had a Skype call with Chris.

I really related to Chris because he and I are both religious people.  He spoke about being upset with God for many years and finally finding his purpose in life.

I had so many questions for him: What was it like to be nonverbal?  What was the most frustrating part for you?  What was it like once you finally got your device and had the ability to communicate?  What struggles do you still have today?

I ended up asking him, “When did you realize that it was okay to be different and your life has worth?”

Because to me, Colin is perfect.  He is different, but he is absolutely, 100% perfect.  I love him just as he is, and I want the rest of the world to see how amazing he is.  I want everyone to accept him and support him….but I also want him to love himself.  Being different isn’t easy, especially for kids and teenagers.  I knew that Chris would have an insider’s perspective on living in a world that just doesn’t always understand you.

His response:

I was probably 22.  And I would try to point out to him, “Hey, everybody has a disability.  Most people can hide it, but everybody is different.  Everybody has their struggles, and everybody has a purpose too.  It’s a choice of what you do with your life.”

Cue the tears.

Because everyone does have struggles.  No one has the perfect life.  We must live the life that we have been given.  We can choose to wallow.  We can choose to be complacent.  We can choose to give up. We can choose to just exist.

Or we can choose to really live the life we have.  We can choose to fight.  We can choose to persevere.  We can choose to be happy.  We can choose to use our lives to help others.  We can choose to really be who we are and know that it’s who we’re meant to be.

Thank you, Chris for your wisdom and for choosing to share your story with crazy, crying mamas like me.

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Life was Hard

Fear.
Anxiety.
Frustration.
Loneliness.
Isolation.
These words were majorly in my vocabulary several years ago.  Before my son was diagnosed with autism, life was hard, but I didn’t know why.  Everything was so much work.  He wasn’t meeting milestones which concerned me.  He cried and screamed, and I couldn’t figure out what was wrong and that was frustrating.  I grew more and more anxious by the day: what is wrong with my baby?  Why is this so hard?  Nobody told me it was going to be this hard!
Now, let me back up.  Yes, people told me that it would be hard:
“You better sleep now, because newborns don’t let you rest.”
“Make sure to feed your kids the right foods as babies or they’ll be picky eaters when they’re older.”
Well, nobody told me that I wouldn’t sleep for longer than a 45-minute stretch for 5 years.  Nobody told me that my kid would literally eat only a handful of foods, and then he would be lactose intolerant and have a gluten sensitivity, so his very small diet would get even smaller. ..because these people were talking about typical babies…but mine wasn’t typical.
I tried to hide it for the longest time.  I wanted to look like I was Super Mom.  I wanted to fit in and be like every other mom that I knew. 

I remember the first time that a situation was so overwhelming for me that I just had to walk away.  A group of friends, who had kids about the same age as mine, were taking their kids to see the circus elephants eat lunch outside the mall.  (The circus, remember when that was a thing?!)  So I loaded up my kids, probably one and two at the time, and we went to watch the elephants eat lunch.
We had to wait for a while before the elephants even came out.  I had a kid in a stroller and a kid in a baby carrier.  Colin was getting antsy. I was getting anxious.  When the elephants did finally arrive, we couldn’t really see so it was a little disappointing and definitely not “the greatest show.”
Afterwards, my group decided to take the kids into the mall for cookies.  As I stood there in line, I had a fussy not-yet-diagnosed-little boy and his big brother.  They both wanted to be held, one was crying.  I felt like the whole world was looking at me, judging me.  The whole time, I’m telling myself, “Hang in there. This is no big deal. It’s fine, just do it.  Quit being such a baby yourself.  People take their kids out all the time to do stuff like this.”  The tension grew with more fidgeting, wiggling, fussing, and crying. 

I looked at my friend and said, “I can’t do this, I gotta go.”  And off I went to my car. On the way home, I cried.  What was wrong with me?
See, I blamed myself.  Everyone else could take their kids out and do fun things, why couldn’t I do that?  Why was everything so much work?  Why did I always sweat profusely, and why couldn’t I handle my kids solo like every other mom out there?  They weren’t “bad kids,” so I must just be a terrible mom.  Why would God give me these wonderful little creatures if I was so bad at being their mother?  Was this why we had struggled to get pregnant, because I really wasn’t cut out for this Mom Thing?
Life was like that for years.  I was the only one seeing Colin’s delays, so was I just crazy? We stopped trying to go anywhere, because it was just too hard.  Our life was a constant shuffle of “one of us stays home with Colin” and “the other one takes Finley out places.” Things really didn’t get easier until Colin started ABA and was able to communicate with his AAC device.
Looking back now, I see it: his sensory processing disorder, the difficulties in social situations, and me, wanting everything to go perfectly and it just….never did.  I also see that my friends’ kids weren’t fighting the same battles that mine was fighting, so it really was harder for us.
I write this to say:
 if you’re here in life right now….it’s okay.  It isn’t your fault.  Sometimes, it’s just hard.  It’s okay to admit that it’s hard.  And if you’re feeling like no one else can see you right now, they just couldn’t understand – know this:  I see you.  I 100% get it, too. 

You’re not a bad mom.  You might feel like it, and you’re going to call me crazy, but you’re not.  

You’re just figuring things out, and that takes time.  You’re doing the best you can, and that’s all you can do. 

I’m still a little guilty of this, but you have to stop comparing.  Don’t compare your kid to someone else’s, and don’t compare yourself to other moms.  Your journey is unique, and it’s going to look different from everyone else’s journey that you’re seeing right now. 

After Colin got his diagnosis, things started to fall into place.  Things made sense.  We got him the right services.  We got him the help he needed, and he’s made huge progress. 

I think it’s important to say that I’ve changed too.  I don’t see life as a competition.  I’m not supposed to be like “that mom” or “that mom.”  I’m Finley and Colin’s mom, and our lives look a little different…and that’s okay.  We are just gonna keep doing us over here – and I hope that you keep doing you over there. 

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What is Important to You as a Mom?

I thought I would be the best mom.  That was my plan, anyway.  
Before I had kids, I had this idealized version of my future-self floating around in my head:
  • I would only feed them homemade foods that were organic and healthy.  No fast food for my little angels.   
  • I would limit screen time and keep them in full supply of crafting materials and educational activities.  
  • I would have them on strict sleep schedules in their own beds.  
  • I would continue to exercise and be the fit mom who looked good in her mom jeans.  
  • I would host the best birthday parties and play dates – everyone would want to come to our house!  
  • I’d have my kids in every activity available – soccer to Sunday School – we would do it all! 
  • I would be the perfect PTO/Pinterest mom who was the envy of all other moms. 
Then motherhood hit me for real, and I’m a completely different mom than I ever planned to be.  
I have two little boys – six and five years old.  Colin is five and has autism. 
Guess what Colin likes to eat?  Grilled cheese sandwiches.  And ketchup is a food group to him.  The closest this kid gets to a vegetable is when he cautiously picks a carrot up off his plate and places it on the table, far away from his beloved ketchup.  In recent news, he has started to eat his ketchup with a spoon as opposed to his fingers…I’ll call that a parenting win.
We have always co-slept because that’s the only way anyone got any rest.  Being a walking zombie is a real thing, and no, it’s not as attractive as it looks on the Walking Dead.  “Why yes, I am tired, but also, this is just how my face looks now.”
I don’t really limit screen time…but in my defense, Colin has learned his alphabet, colors, and shapes from You Tube, so I figure that’s educational.  Finley also has a You Tube channel, so that’s a thing at our house.  
My kids drink their fair share of Coke.  I think they’re holding out for a Coke commercial…they’re gonna have to find something to pay for their Coke habit.  We are finally able to go to a restaurant to eat, and those happen to be fast food ones.  I’m so proud of Colin – because just a year ago, he wasn’t able to eat out at all.   

I often think back to that 27-year-old version of myself and just laugh.  The fact that I thought I could map out what motherhood would look like – I had no idea!
I had no idea that I would have boys 12 months apart.
I had no idea they would be horrible sleepers and require that I buy stock in Folgers in order to function each day.  (I’m still holding out for that coffee sponsorship, too…Folgers, Starbucks, Dunkin….whoever will support me.  We might be an autism house, but I’m not brand-specific here!)
I had no idea Colin would have autism.
I had no idea that autism would change me as a person.
It’s just funny to me how different Mommin’ is from what I thought it would be.  Yes, healthy food is important, but a little ketchup (or a lot!) never killed anybody. Limiting screen time is important, but I won’t beat myself up over the daily Despicable Me or Finding Dory.  
So what is important to me as a mom?
I want my kids to know that they are loved and supported and cared for.
I don’t really care about doing all the “extra things” that I thought would mean that I was a good mom.  I couldn’t care less about Pinterest at this point in my life (and it’s really freeing, I must say).  
In all honestly, I don’t have time to do all the things that 27-year-old Deidra thought was necessary to win the Mother of the Year Award.
Having a child with special needs has really put life into perspective.  I have slowed down.  I see how superficial some things are and try to look past all that. My kids are fed.  They’re loved.  We are doing all that we can to make sure that Colin can reach his full potential and be the best version of himself that he can be. We are doing everything we can to make sure that they are living their best lives.  They’re happy (for the most part!).  I’m maybe not mother of the year by any standards, but I’m trying to leave others’ standards behind and live by own.
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