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I shouted at my disabled child

13 Apr

Oh yeah, I shouted at her.

She threw a shoe at her brother because she was angry with me for turning off the tv.

I turned off the tv because she was screeching at her sister.

Mind you, these siblings did NOTHING to earn such responses from their sister.  She was just being moody and awful.  She was already heading for a time out when she took off her shoe and threw it straight at her brother’s face.

I will say, her aim was excellent.  I was kind of impressed.

But her over-the-top reaction needed an over-the-top-in-her-world reaction from me.  Which was me saying very loudly and very sternly “MAURA!  NO! You do NOT throw shoes at your brother! You do NOT throw ANYTHING at ANYONE!”

She started to howl, and I said “HUSH!”

She hushed.

Because while my child is cognitively disabled, she does have the bare basics of right and wrong down.  Shoe throwing is wrong.  Even she knew she had crossed a line with that.

It’s hard with Maura at times, because she doesn’t get so many concepts.  I can’t take something away for a day or a week, she doesn’t have a great grasp on time. If she is in trouble, that point has to be made at that moment, or else it’s forgotten in her mind.  Her moods can come and go so quickly.  She gets basic things – like “If you can’t control yourself, we have to leave” and time outs.  Even then, time outs are more for her to calm herself down.  If we try to stay in the situation, she will stay in it emotionally, which is why you’ll see me walking her out of somewhere quickly as she is carrying on.

If she’s upset because something isn’t working right, I try to talk her through it.  We try talking through things first.

But sometimes…she’s just being a bratty little sister, and should be dealt with as such.

Like yesterday.  Throwing shoes at the brother who had the bad luck of being right there.

And you know what?  It’s okay to shout at her for being a bratty little shoe throwing sister.  She learned a lesson and hopefully won’t be using her siblings (or anyone else) for target practice. She spent some time in a comfy chair, Monty Python Spanish Inquisition style, and we hugged it out afterwards, all was forgiven.

In a weird way, it was a bit of a normal moment.  She was being horrible, I shouted at her, we hugged it out afterwards.

No one said all normal moments would be fun.

 

 

Making sacraments and memories

8 Apr

So we’re Catholic, right?  On my side, we’re nothing but Catholic thanks to a strong Irish and Italian heritage.  I grew up in an Irish/Italian/Polish neighborhood, where there was a Catholic church every square mile.  My best friend growing up was Lutheran – which I thought was the most exotic religion ever because it wasn’t Catholic.

Because of all this, so many family gatherings growing up revolved around a sacrament – baptism, First Communion, Confirmation.  They were the Big Deal Moments of a typical Catholic childhood, and were celebrated in style, with herds of family showing up at such events.  And if herds of family couldn’t make it, it was still a Very Big Deal requiring new outfits and being allowed to pick out pink champagne and having a very small glass because you had made your Confirmation.

They were our milestones in life, and when I got married, I knew these would be the milestones I’d live through again through my children.  Babies were baptized, little boys picked out suits for their First Communion, special dinners were arranged for the last minute Confirmation the boys had in Ireland (it happened two months after we moved there)  – because while last minute, it was still a big deal.

And then there was Maura.

Maura who we tried to put in religious ed classes before we moved to Ireland, in hopes that maybe she’d catch on to some concept.  She didn’t.  The class was too late in the day for her.  (The staff were wonderful and did their best.)  Maura who didn’t get any of the basic concepts of religion except learning how to say “Amen!” loudly with everyone else.  She also didn’t understand birthdays well, and forget the idea of Santa until she was probably ten years of age.

I don’t know when I sort of packed up the dream of Maura making her First Communion, but I did.  I tucked it away after she passed the usual age to make your First Communion (which is around eight years).  I moved on.  Just another thing she’d never do. I’d see pretty white dresses and sigh, but told myself it was just part of our lot in life.

Until Maura’s Irish school had a class for Confirmation.  I wondered…were they doing First Communion as well?

It turns out the ONE letter home that got lost was the letter about “If anyone wants to make their First Communion or Confirmation, let us know.”  Maura’s class had already made theirs, so it wasn’t on the teacher’s radar.  I asked the principal about it, feeling a bit sheepish because it was something I should have asked about months earlier.  But I had tucked away that dream, and was ready to be told it was too late.

Instead, the principal got right on it, and suddenly, Maura was going to make her First Communion with the Confirmation class.  She’d go to the preparation classes with the Confirmation class, work along side with them to prepare, and was added to all the lists as a First Communicant.  They modified things down to Maura’s level (“Jesus is love – what is Jesus?  Love!”) and practiced taking communion with her classmates.

But most of all, I was able to allow her to pick out a pretty white dress.  We went to the store, I pulled down all the dresses in her size, lined them up for her, and let her choose.  We picked out accessories –  gold shoes, white ankle socks, a flower wreath for her head that she wasn’t going to wear but who cares?

My husband looked at the price tag and joked “Wow, did you pick out the most expensive dress here?”

We had.

But instead of joking back, I started to cry.  Because I had given up on this dream.  I had chalked it all up to yet another experience Maura wouldn’t be able to have because of her disability.  One more thing her disability had taken from us. To have it suddenly handed to us, be told “We’ll make this work.”, and be given that day?  It was suddenly overwhelming.  I hadn’t realized how much I had wanted this until I was given that moment.

Maura was going to get her Big Day, just like the rest of her siblings had gotten.  She would have her pretty white dress, just like her sister did.  She would have a party, and her picture taken, and all the required fuss.

Though in a way, it was more about me than her.  Maura would have gone along happily, never knowing what she missed.  But it would have eaten away at me, just one more thing her disability robbed from us. One more thing that would separate her from her siblings.  One more memory I wouldn’t be allowed.  One more milestone she would never make.

Maura’s First Communion was a gift to me.  It was on a beautiful spring day, at a beautiful church, filled with beautiful people.  Half her school was there, and Maura’s teacher brought her class so they could be there for her. The priest was so very good, and gave the best shortest homily ever.  Most of all though, it was full of joy and smiles and unpredictability in the best of ways. I look back and still smile over it all…okay, and maybe tear up slightly.

It was a gift.  We got to have our day.  We got to have that milestone.  We got to have those memories, and the picture of her on her First Communion Day to add to all the other pictures of family on their First Communion Day.

A friend asked me recently if I’d ever written about a child with limited understanding making their First Communion – and I couldn’t remember if I had.  So I’m writing about it now.  For those of you who are in a similar boat, who have tucked away the dream of First Communion or any other major milestone in your faith like this, I am here to say – it can be done.  Look into it, make inquiries, find ways to make this happen.  Though Maura may not even begin to scrape at the idea of Catholicism, the way I see it, this is how God made her, and if anyone will understand that she may not grasp all of the right concepts, it’s Him. My brother-in-law, who has his doctoral degree in theology, has already told us there is no reason Maura shouldn’t be able to make her Confirmation as well.  Having already seen the older school mates of Maura’s make their Confirmation, I know this is now a possibility for her too.

Besides, we as parents have to give up so many dreams when our child is diagnosed with disabilities, why should we give up on this dream?  We shouldn’t have to, and I’m so glad I asked that sheepish question two years ago, and so thankful that Maura’s principal was so accommodating, and so grateful still to have that day.

Maura on her First Communion

Maura on her First Communion

“I could never do what you do!”

7 Apr

It’s supposed to be a compliment.  People say it to special needs parents all the time as a way of commending them for their hard work and perseverance.

“I could never do what you do!”

Yeah, well guess what?  Eleven years ago, I couldn’t have imagined doing what I do now.  I had no plans on doing what I do now.  It was never on my radar that I’d be still potty training my daughter this close to her 12th birthday.  It never occurred to me when I gave birth to her that she’d live with us forever.  I never pondered the thought of adopting a child with special needs.  I hadn’t really been around any people with disabilities at all.  I knew nothing about special education, had never seen a neurologist, had never needed more than the basic medical intervention for my older three children who rarely even got ear infections.  We could go the entire year before seeing our pediatrician, because my older three kids were the epitome of robust health and early milestones.  Heck, even during her first year of life, Maura fell into that “happy healthy normal baby” category.

We never saw it coming.  There was no time to prepare.  Just one day – BAM! – we went from normal parents to “we need to run tests”.

I didn’t know what I was doing.  I flailed fantastically for a bit.  But I had no time to ponder if I could do any of this because things had to be done. Blood had to be drawn.  Evaluations had to be done.  Appointments needed to be made.  And three other children had to be cared for in between it all.

If I had thought about it, I probably would have crashed sooner.  But I didn’t have time for pity parties, I had to make my toddler catch up developmentally. By the time we embraced the idea of her delays being more permanent, two years had flown by.  Even then, I had to fit my mental breakdown between soccer practices and speech therapy.

There were things to do, and I had to do them.  If I didn’t do them, no one else would.  Not doing was not an option.

When Maura was diagnosed with epilepsy, I sat in the doctor’s office as they explained medications, and seizures, and handed me a big book to read about childhood seizures.  My first thought was “I’m going to need a bigger purse.”  It wasn’t until they handed me a medication with the words “rectal gel” on it that I thought “Oh forget this.  I can’t do this.”

But I learned about it.  I was prepared to do it.  Because there was no other choice.  It had to be done, and I was the one to do it.

When the fit hit the shan at school with Maura, I spent hours going toe to toe with the special ed director.  Not because I wanted to – I have always been more comfortable in the “non-confrontational” role.  But it had to be done if I wanted to make sure Maura got what she needed.

Did I think, almost 12 years ago, that I’d be here, in this role, as both mother and caregiver to a special needs child?  That I’d become a voice for her and families like us?  That I’d get giddy at the thought of new medical research?  That I’d be mentally designing a house with little features to help make life with a disabled child easier?  Could I have seen myself kneeling on the floor of a fabric store with my hysterical tween helping her calm down?  Could I have imagined any of this?

The honest answer is – “Hell no.”

It was never on my radar.  It was never part of my life plan.  It was never even a thought in my brain.  I wasn’t prepared for any of this.  I couldn’t have done what I do now.

But I learned, and I do it.  I do it because not doing it is not a choice.

I’m not a hero.  I’m not special.  I’m just doing what any mom who loves her child would do – learn and adapt and carry on.

Because not doing it is not an option.

 

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Speaking of those doing what they have to do, please check out my campaign to help out a single mom of ten who survived domestic abuse and got herself and her children out of the situation, but now needs our help…click here to learn more….

 

 

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