Disability 101

Lucy Parr

First up I’d like to put a disclaimer out right here. This topic is something close to my heart, and is in no way meant to insult or guilt trip you lovely people; but rather inform and educate from the perspective of those of us living in the parallel universe of disability. The biggest hurdle we face as parents of special kids is an ignorance and lack of education on behalf of the world. These barriers infiltrate our everyday; irksome diversion signs on this long haul journey to destination unknown. Take a walk in my shoes for a while….

Five things you should never say to a special needs parent….. (and a few things you should)

1. God only gives special kids to special people, and God never gives us more than we can handle.

Top of my list are these two gems- more often than not they come together, like the bread and butter of awkward conversation. Whilst I understand the inherent need and heart behind offering kind sentiments intent on comfort and explanation this is, quite frankly, bulls**t. Let me explain. Cleaning poo off every exposed surface in your house. Stopping your child from making himself sick when distressed. Advocating for your child 24:7. Permanent sleep deprivation. Wishing every day to hear one precious word fall from his lips. These are a few of the ingredients for Recipe Real Deal. I know of many families for whom the strain of raising a disabled child has been precisely too much to bear- marriages have melted in the heat; children removed from their homes for the safety and sanity of all concerned. Thinking further afield are you telling me the child in sub-saharan Africa who dies of malnutrition, or the Eastern European teenager trafficked into the sex industry were not ‘given’ more than they could handle? People everywhere find themselves dealing with situations no human being should ever have to bear. Shit happens, let’s just call it out. Our journey is rough, and it definitely IS more than we can handle. We are not superhuman or better than you; just because we have special kids doesn’t make us special. We’re wading through this muddy swamp the best we know how, and when you row past on your kayak of good sentiment, it hurts.

2. I couldn’t do it.

My problem with this little phrase is the embedded assumption that where you couldn’t, I could. The reality is this- we really can’t. We really can’t, but we absolutely have to. There are days I want to run away and start again, days where the daily grind crushes me to powder. But the fallout if I choose out is too dire to think about. Could doesn’t come into it- if you had to, you would.

3. It’s probably just a phase- he’ll grow out of it.

Oh. Dear. Lord. This one has me sitting on my hands so as not to publicly facepalm and embarrass my fellow conversee. As humans, difference seems to sit uncomfortably and we automatically try and bridge any gaps with a jolly fix it comment. Firstly, no he will not grow out of it. B has a rare chromosome disorder, for those of you who skipped biology in high school this means his disability is in every cell of his body. Hardwired, if you will; however much Miracle-Gro I feed him won’t change that fact. Other disabilities are similar. Take autism, for example. Copious research has shown autistic brains to be routed differently from the start. Special needs parents are in a constant state of grappling with reality, and reminding us so harshly of what is NOT true for our children does nothing but delay this process. We’re dealing with the differences- please join us in that too.

4. My mother’s brother’s cousin’s neighbour’s dog owner’s child had special needs. I know exactly what you’re dealing with.
Er. Never, ever say this. Period. Some of the more sensitive among you will have your jaws on the floor right now, but in actuality this is a phrase many of us have heard before (interchange the people as necessary!) However much you THINK you know about our lives, you know very little. Whatever your ‘experience’ level, unless you too are on this journey you’ll only ever have sideline viewing, and that’s OK. You know the facts we are comfortable sharing, the prettily-packaged-digestible–to-the-general-public-bits. We’re already so very isolated on this road, the last thing we want is to be labelled the ‘needy obsessive one’ in the few social circles we do manage to turn in. It takes a lot for us to share, and so we filter. You know when you watch a 3D film and you’ve forgotten your glasses? We have the specs.

5. It could be worse

This little throat punch is especially troublesome- to be told things could be worse means that we have already made ourselves vulnerable by letting you in on some struggle or another. (But you’re right, my foot up your rear may worsen things for you today) Seriously though, as soon as you say this to me, a mental note gets scribbled as I shift your name from the safe list to the guarded list in my head. We all need a bigger safe list, but for special parents that network of true friends is literally our lifeblood. Of course tomorrow could be worse, but that doesn’t invalidate my trials of today.

When I asked my network of special needs parents the cumbersome clangers people had dropped in conversation regarding their kiddies, they came up with the following. Big shout out guys, thanks! Hold onto your hats, these are all genuine quotes from no doubt well meaning people, along with some varying responses.

Can I touch him?
Gracious response: He needs hugs just like any other kid.
Ungracious response: Oh no, definitely not, he’ll break.

What’s wrong with him?
Gracious response: launch into educational chat about child’s condition.
Ungracious response: What’s wrong with you?

She doesn’t look any different to me.
GR: Not all children with a disability look different.
UR: You don’t look ignorant, but here we are.

She’ll eventually catch up/walk/talk/potty train etc.
GR: I’d really love that.
UR: Brilliant, an all-in-one therapist. Could you tell me where I can train for that?

Why doesn’t he talk?
GR: His brain is wired up differently.
UR: In all honesty, with comments like that, I’m wondering why you do.

But he’s so cute and adorable.
GR: I agree.
UR: His smile is magical, especially at 4am with poo all over his face.

Like I said at the start, this isn’t meant to shame or guilt trip you. Please don’t be worried to chat to us- having special kids has made us more thick skinned than you could know (and also developed a somewhat warped sense of humour!) But it would defeat the purpose of this post to leave you with a sour taste in your mouth; I want to leave you with a few truths and some practical ammo, a disability 101 of sorts. Here comes the sugar…

We are lonely. I always appreciate when someone takes time out of their busy-ness to connect with me. So often our lives get so sucked up in caring, advocating and fighting for our kids we have little time or energy left for anything else. If I haven’t been in touch for a while, apologies, you are an important part of my life and I need your input. A text, an email, a phonecall or even a letter go a long way to making life less lonely.

We’re copers. We cope because we have to, not because we choose to. Our alternative to coping doesn’t bear thinking about, but please don’t presume we’re coping well. A lot of the time we may present a surface calm, but underneath we’re frantically scrabbling to tread water. Ask how we’re doing and be prepared for an honest answer; be genuinely interested in our chaotic life; ask how you can help. Knowing people are listening is worth more than you can know.

We get forgotten. So often our family gets forgotten because the assumption is it’s too difficult for us to join in mainstream activities. People are also worried that it will be too tricky to accommodate our needs as a family, so often (through no ill intent) they don’t even try. We’re constantly thinking outside the box and being three steps ahead so we can function as normally as possible- after all we have three regular edition children in this dolly mix. All it takes is a conversation about how we can work it and chances are we can probably join in some way or another. Consider this the knot in your hanky.

Having a special child defines our family. This is not our preference, this is just the way our shit got dealt. Let us talk about it without fear of being labelled obsessive or needy. Offer to help. Be authentically interested in the progress of our kids without trying to whitewash the chaos. Love them with us for the unique and incredible people they are. Don’t offer us advice. Take time to connect and hear us- I mean really hear us. Be patient when our fighting spirit occasionally overspills to you.

But lastly, remember this. We love you, we need you, and you can be the difference between Concorde or Titanic. Titanic simply can’t be an option

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Being Grace’s Mom

Colleen Doyle

Today I was sitting at Grace’s speech therapy waiting for her. I was chatting with a mom of a little boy that goes to Grace’s school. She was commenting that her son goes to five outside (of school) therapies a week. In comparison, Grace receives a small amount of therapy in school, like most kids, plus we do private speech weekly. Our insurance only pays for 45 visits of one type of therapy a year, so I feel lucky that we get to do it at all. Once a week is about all I can handle anyways, as Grace is a member of an extremely busy household.
The mom asked me if I work on academic skills at home with Grace. She showed me the workbook her son was working on at home. The answer I gave her was a half-hearted “Oh I practice some skills with her but mostly I am just her mom.” The conversation made me feel a little guilty that I don’t do enough “academic” stuff with Grace every day.
And then I thought about it some more. Grace is like a puzzle. Academics are one piece of that puzzle. There are so many other pieces… Some of them seem so big and overwhelming at times. The last few months have been all about seizures and it is all I can do to deal with those puzzle pieces. This week’s difficulty is that Grace now has kidney stones (from her modified Ketogenic diet) and one of the jobs I have every day is to make sure she drinks enough liquid. I can easily get 6 cups of liquid in her a day, but haven’t yet mastered the 8-10 cups they want her to have. Included in all this are the five special drinks I have to force her to drink daily, with Mirilax, Cytra-K and MCT oil added in there. I end up following her around all day, trying to shove the straw into her mouth. And that’s only one small piece of the puzzle.
Today, I did not work on academics with Grace. I did take her to the library, where she practiced returning books into the book deposit slot. We read a whole bunch of books there, including her favorite, Chicka Chicka Boom Boom, and made sure to put them back on the shelves up-and-down. I didn’t practice one-to-one correspondence with her, but I did take her for a ride on her new tricycle, and while her steering isn’t so great, she’s an excellent pedaler. I didn’t practice writing her name with her, but she did help her sister set the table for dinner. I didn’t practice sight words with her, but while she was in the bath tonight, we looked into each other’s smiling eyes and sang “Down by the Bay” and “Baby Beluga” together.
When Grace was a baby, I remember coming home one day from her physical therapy appointment, attempting to work on all the skills that we had been taught, and feeling like a failure for not being able to do it all. That day, I decided that (if I were to remain sane) I needed to not worry or feel guilty about being Grace’s therapist or teacher, but instead, to just be her mom. That doesn’t mean I don’t ever practice skills that she needs to learn (academic or otherwise), because I do. But if a teacher or anyone else faults me for not practicing those skills enough, too bad. I am letting go of the guilt… My hope for her is that she is happy and enjoys her life and knows how very much we all love her. Meanwhile, I am doing the very best that I can to take care of every piece of the puzzle that is Grace.

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Tough Day For A Dup15q Momma

Rachel Pomainville

 

I don’t know how you do it.”

Every day must be a challenge.”

I get these sympathetic statements occasionally from friends and family who get the difficulties of raising a special needs child with an uncommon disorder. With 100% honesty, it’s pretty normal to us; she was our first born, therefore adapting, modifying, and just plain McGyvering daily life to accommodate, and to better include, Noëlle has become ingrained in our every day actions and routines. We’re good at it. In fact, so good at being frigging magicians special needs parents, that I don’t think even our closest family and friends realize how hard it is. How spirit dampening, dream crushing, tears threatening hard it can be some days.

Today I threw my back out as I was holding our six year old daughter while she had a very physical meltdown at the massage therapist’s. Later at home, while sitting stiffly against a heating pad, counting down the minutes until the handful of ingested Advils kicked in,  I allowed myself a few rare minutes to wallow in bitter anger.  Not directed at our daughter Noëlle, but at life, and the Universe in general.

I’m going to share a much guarded secret with parents of regular/typical kids: every special needs parent has these fleeting moments of pure despair and red, hot rage and overwhelming sadness- we are just well versed in hiding it from you. We hide it because you don’t understand. We hide it because we don’t want you to think we resent you. We hide it because it is easier than trying to justify our feelings. We hide it to avoid another argument. We hide it because we need to be perceived as knowing what the hell we are doing.

It’s usually the little things that ends up pushing us special needs parents over the edge momentarily: the most recent exploded shitty diaper, a Facebook friend’s bragging status about their abnormally smart toddler, the ninth seizure of the day, extended family members being…extended family members, a social situation that highlights how delayed our children are, a massage session that ends in hot, angry tears for everyone.

I’ll tell you this though, for as quickly and unexpectedly as these emotional upheavals arrive to break us down, we are just as fast to shake them off, and straighten our shoulders against the rest of the day. We wipe our tears briskly away, give ourselves an impromptu pep talk (“it’s only a sofa. It’s only a sofa. It’s only a feces smeared, micro suede sofa”) and move on. We as Dup15q parents need to acknowledge and own these feelings, but not let them dictate our attitudes and outcomes.

Everyone has tough days

“I don’t know how you do it.”

I don’t know either; I just do.

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Bittersweet

Bittersweet
Lucy Part

My favourite encounters in life are definitely the extreme ones. I’m a bit of an all-or-nothing girl. As a result I’m impatient, feisty, outspoken and pretty intolerant of apathy in all its various forms. I put my hands up to making some impractical life choices because I live in the here and now, although my long suffering (and very different) husband balances me out and somewhat earths my incessant electric need for new experiences.
That said, having a limited edition kiddo was never on my bucket list of new experiences, if truth be told. And yet the range and intensity of emotion that is laid at my door daily through this beautiful boy is beyond even my all-or-nothingness. It’s bizarre, upside down and back to front-sometimes it feels as if the milestones we celebrate with all our heart are the very same things that cause the most pain.
We recently met with the incredible Team B to chat through his progress over the past year, celebrate his achievements and start setting appropriate targets for the next year. B’s teacher had crafted a lovely photo and video montage of the mischief-maker himself and amidst British tea and sympathy we began watching. As B’s gorgeous face flashed up on the screen and ‘You Got a Friend In Me’ drifted from the speakers there was a crazy clash of the benign and the utterly significant. B smiling. B eating food on his own. B sitting on his chair in circle time. B showing an interest in other class members. B clapping to sign ‘more.’ B playing in the water. B listening to a story. B pointing at a photo to communicate a need. My heart leaps thinking how far down the road B’s come since the days where eighteen hours each day were spent screaming. The days where we had no idea how to help him. The days when we didn’t even know what was wrong with our baby. And yet, in the very same instant, my heart dives as I remember with a twisted sucker punch that my boy is a whole six years old. Other six year olds talk. Other six year olds can make choices, play football, eat food by themselves, hold a conversation, keep themselves safe and learn. B’s targets? Hold a mark-making tool and appropriately utilise it. Load a spoon at mealtimes. Turn the pages of a book. Tolerate messy play. Copy sounds an adult makes.
I walked away from the meeting bursting with pride; excited for what B would achieve in the coming year, thankful that he was still with us and totally overwhelmed by the love poured out on him by his teachers. I also walked away feeling gut-wrenchingly heartbroken all over again. Grieving all over again for the ‘normality’ we would never have. For all the things B wouldn’t experience. For all the dreams I never even realised I had for him until they were shattered.
But over and above all these reactions came something even more extreme; something so bittersweet I almost couldn’t bear it. Love. I realised that for my heart to stretch so high and so wide and so deep in my feelings for this kid, I must really love him.

And a lot of times, love hurts.

“Love bears all things, believes all things, hopes all things, endures all things. Love never fails….. Now faith, hope and love abide, these three; but the greatest of these is love. ”

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A Mom’s Vent

Lorie Markwell

As I read Facebook from day today and I talk to family and friends, I get this feeling in my heart and I just can’t shake it- so I started jotting down stuff and this is the result.

When your child is born you have dreams and expectations; we special needs moms do too and they changed very quickly and then worries coming to play and we see “normal” parents lives with their children I find myself getting angry, sometimes multiple times a day, and this is why:

You worry about your child talking too much I worry my child will ever talk at all.
You worry about getting your child to eat their vegetables; I worry my child will ever be able to eat.
You worry about your child crawling, and then walking, and getting into everything; I worry that my child will never walk.
You worry about your child always wanted to take a bath; I worry because my child is scared of the touch, and the feel of water. How can I get her to even take a bath?
You worry about your child playing too long at a friend’s house; I worry because my child doesn’t get invited to go play.
You worry that your is getting a cold; I worry because a simple cold usually turns into a hospital stay.
You worry about one doctors appointment; I worry about 10 different doctor appointments.
You worry about the first day of school; I worry “Will my child even be able to handle school?”
You worry about how will I fit dance, T-ball, and Girl Scouts and I worry and cry because my Child can’t do that.
You worry about your child dating; I worry and cry because my child will never know.
You worry and complain because your child is awake, and won’t sleep; I worry about my child not waking up from her sleep.

Normal parents sometimes just don’t “get it.” I feel as though they take small, simple things for granted and that makes me very sad. Day after day I see, read, and hear it and felt compelled to vent.

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Our Journey

Our Dup15q Journey
By: Jenny Peppers

After a very long and difficult pregnancy, Faith was born almost a month early. But she was perfect in every way. 10 little fingers and 10 little toes. It wasn’t until she was a couple of months old did we notice that her demeanor was still very floppy. She wasn’t holding up her head or putting weight on her legs… Just everything about her seemed “floppy.” Instead of waiting for Faith’s 4 month checkup, I took her in to see her doctor. Since there was a family history of a neurological disorder that slowly crippled Faith’s paternal Grandmother and Great Grandmother, her doctor didn’t waste any time referring us to see a neurologist and putting in a request for early intervention. It seemed like forever between the time the blood was drawn for genetic testing and when we got the call from her neurologist. The conversation started out great. He told me that Faith didn’t have the crippling neurological disorder that I was so fearful of. But… (There is always a but) another anomaly was discovered; an extra chromosome 15. He proceeded to tell me that he wasn’t sure what this meant for Faith or how it would affect her later in life… “Because, honestly, there are not a lot of cases out there like this,” he said. The only thing he could do was refer us to a geneticist who might be able to explain things to me better. And so this begins our Dup15q journey. From that point on it were non-stop appointments from one specialist to another trying to get a better understanding of what Dup15q was and what it meant for Faith. Imagine my disbelief & disappointment when it was discovered that these ‘specialists’ were reading the same Google’d websites I was!
The early intervention has been a major blessing for Faith. Even though I spend several times a week driving her over 30 miles (one way) for her physical, speech & occupational therapy sessions I am positive that it has made all the difference for her. Even when traditional doctors told me that I was wasting my time and that there is no evidence that these sessions are beneficial, I still take her. I just couldn’t bear the thought of stopping the sessions, only to find out several years from now that I made the wrong decision.

With each milestone that she missed or struggled with, I feared “Is THIS going to be how Dup15q affects her?! Will she forever have that floppy tone and never be able to sit up?” And when my fear got too much for me to bear, she finally sat up on her own! Which in turn left me feeling silly for worrying so much. The same thing with crawling, pulling herself up into the standing position, walking and even picking up finger foods. I would worry myself sick and then she would rise up and meet the challenge. So at this time, even though there are still several milestones that she has not met, the main one that I worry most about is the fact that she is ‘non-verbal.’ She mimics what you say but she is not able to communicate her needs. And because of this, she has severe meltdowns when we are not able to figure out what she is trying to tell us. I’m hoping and praying that this will be another milestone that she will rise up & conquer because I can’t wait to hear what she has to say. I know she must have some great stories to tell.
The more I learn about Dup15q and certain disorders it’s linked to, the better prepared I am to get Faith the help she needs pretty quickly. For example, when I started noticing Faith rocking, spinning, flapping her hands and darting off, I was able to go to her doctor and tell her that I was concerned that she might be on the Spectrum. And because Dup15q is the most frequent chromosome anomaly in people with Autism, we were able to get her evaluated a lot sooner. She was diagnosed in February 2013. It was the same way when we thought she was having seizures. She was diagnosed with Epilepsy in April 2013.

I know that our journey is far from over and despite all of these challenges Faith has had in the 2.5 years of her life, she is genuinely a very happy little girl. She wakes up in a great mood and has a wonderful lighthearted nature about her. She loves her big brother and sister, has the cutest dance moves and we all laugh together when she crinkles up her face and puff up her lips. I know it’s kind of a cliché to say this but she has taught me so much more then I could ever teach her. And even though I will continue to worry about what tomorrow will bring (It’s kind of pointless to tell a parent not to worry) I know that everything will work out exactly the way it is supposed to.

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The Perks of Idic 15

The Perks of Idic 15
Rachel Pomainville

I thought long and hard about how I wanted to introduce life with our five year old daughter Noëlle and Dup15q. No doubt, our heartbreak, frustration , isolation, hurt, and exhaustion is no different from every other Idic 15 family. What I want to convey, however, is how Idic 15 has made us different- how it has made our family better.

Our two “typical” children, Dryden and Raegan, are more empathetic, inclusive, and kind. They have been born into, and raised within a family where special needs are “normal”. They have been brought up to purposefully include children who are different, to not bat an eye at the odd meltdown, to love and protect those who are more vulnerable. These values extend to our nieces and nephews, who now display these same qualities.

My marriage has only gotten stronger. My husband and I tackle every day, every new challenge as a team. We work hard keeping the romance alive, we make a conscious effort to “woo” each other. Neither of us wants to take this journey solo.

I became a full time stay-at-home mom. I had every intention of returning to work after my 12 month maternity leave. After Noëlle’s diagnosis, that became impossible. I thrive in this full time role- that I admit, I initially accepted begrudgingly. Our kids have benefitted in untold ways from having a parent stay at home with them.

We are healthier. Noëlle will never live independently; she will need a caregiver for all of her life. We want to fulfill that need for as long as we can, and lets face it- a lifestyle of bad “food” and inactivity will not help us achieve that goal. Our healthier lifestyle also acts as an example of the quality of life we want all of our kids to embrace and emulate.

We know who our true friends are. Our genuine friends cried with us when Noëlle was hospitalized. They never get mad when we cancel plans when we cannot get a qualified babysitter, or because Noëlle is having a bad day. Our friends educate themselves on her condition, learned some sign language, share the research and information that I post on Facebook and Twitter. They tell us we’re doing a great job.

We’ve sharpened our sense of humour. Life with a high needs child is hard; it’s harder still if you cannot laugh at the crap life throws at you. Overflowing poopy diaper right before family pictures, new iPhone in the tub so she can listen to music while bathing, three kids covered head to toe in diaper cream…kids are funny- laugh at them. Almost every situation we’ve been in is funny in hindsight.

We are sometimes overwhelmed by the support, empathy, and generosity of our community. Our neighbours, parish, recreation centre, and local businesses have never missed an opportunity to support Noëlle, show her love, and help finance her needs. Because of Noëlle and her condition, we appreciate the deeper meaning of “community”, we feel a concrete sense of belonging and acceptance. It truly takes a whole village to raise this child.

We have been given life long perspective. The abnormally large hydro bill last month, the broken AC unit, the person who “unfriended” you, the stomach flu that lasted two weeks- none of them changes the outcome of your life. The small things that we stress over, obsess about, and blow out of proportion are unimportant in the grand scheme of things. The important things to us: our family, our health, our loved ones, and our beliefs. Everything else is “extra”.

This enormous burden/blessing of Isodicentric 15 Syndrome has without a doubt moulded us into better people; we are kinder, more patient, quicker to smile at frazzled parents, slower to judge the choices of others, more organized, more involved, better able to appreciate the simple joys found in every day life. And for this, we are eternally grateful.

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