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Leighton in a raincoat

Three Things You Need to Parent a Child with Special Needs

By Guest Blogger and Parent Advocate, Christina Dyck

June 17th – 23rd, 2018 is Rare Chromosome Disorder Awareness Week. In conjunction with this week, we are celebrating Bee Happy Day on June 19th. This is our 2nd time celebrating this day after being organized last year by Mom, Christina Dyck. We are honored to have Christina write this guest blog for us.

When our daughter, Leighton, was two-and-a-half years old, we finally got her diagnosis: a chromosomal deletion, including the gene GRIN2B. It was a long journey to get the diagnosis. I remember crying in bed one night, telling my husband, “I don’t know how to be a mom to a child with special needs.” I remember my husband’s response clearly. “But you’re already her mom.”

People from all walks of life parent children with special needs.  We have parents in our Facebook parent support group from all over the world. Special needs don’t discriminate. You don’t need a university degree or a “Parenting Special Needs 101” (Seriously…someone write that. I could use a copy.). There are a few things that come in handy when parenting a child with special needs.

1. A Tribe
Whether it’s an online support group, a Mom and Tot play group, or a group of ladies or guys that meets once a month, find someone. You will need a group of people you can talk to. People who can celebrate with you when your child meets milestones that most parents don’t even remember. People who you can talk to on the hard days who will “get it”. No judgement, just love. Although I haven’t met any of the people in our parent support group in person, I feel like I know so many of them. I hurt with them when they’re having bad days. I tear up when the parents post a new accomplishment for their child.

2. A Sense of Humour/Positive Attitude
There are going to be many days you will want to throw in the towel. Most parents have experienced days like this. With special needs, though, the future may seem daunting, and stages feel like they will never end. You will need to find the funny in situations. You will need to find some positives.
Some examples:
-Yes, my daughter had a meltdown in the grocery store AGAIN, but it lasted half as long as last time, and there were only 20 other people in the store.
-Yes, she hit someone AGAIN, but she used words! “I don’t like that, don’t do that.” Seven words!

3. Extra Room in Your Heart
Kids with special needs have a way of wiggling themselves into your heart. Leighton tends to seek out people who aren’t necessarily “kids people” and hang out with them until they love her. She gives the best hugs and snuggles. She can make me laugh like nobody else. I could never count the amount of people she’s made smile.

With the right support and the right attitude, you will not only survive, you will thrive. Your child with special needs will make you a better person, and you will start to see strengths in yourself you never knew were there.

I’m not saying parenting a child with special needs is easy. It is FAR from easy. It is the hardest thing I have ever done. What I am saying, is that you can do it.

Christina Dyck is a domestic engineer, and a mom of three: Paisley June (9), Leighton Capri (7), and Griffin David (the *lovely* age of 3). She and her husband, David, their children and Winnie the dog call a small town in Saskatchewan home. Lover of coffee and all desserts, Christina enjoys watching reruns of The Office and playing Candy Crush in her non-existent spare time.

Celebrating Rare: The GRIN2B Podcast, Episode 1

Celebrating Rare: The GRIN2B Podcast, Episode 1

By Guest Blogger, Phil Ash, GRIN2B Foundation Board Member

Hello! This is Phil Ash, teacher, father, Treasurer of the GRIN2B Foundation, and the host of Celebrating Rare: The GRIN2B Podcast. It took until the very last day of GRIN2B Awareness Month, but, as promised, here is the first episode of our very own podcast, Celebrating Rare: The GRIN2B Podcast. When The GRIN2B Foundation started planning our #Grin2bAwareness month, I thought this would be a small way I could contribute to the cause. I am a radio and television teacher, and using media to connect and inform GRIN2B families sounded like a good idea. I hope you enjoy the listen, and understand that we will get better as we go along. This first one will hopefully be unique, in that it only features my voice. Over time, I hope to bring in other GRIN2B family members as guests so they can add their voices to each episode and share their own personal journeys with GRIN2B.  

Even though I have done live radio countless times, this was the first time I have produced a podcast, and I was a little unprepared for the process. In live radio, you open your mouth, say stuff, read off of a page, and hope for the best. Most errors are understandable, as no live production is ever perfect. Human error is always a presence. Podcasts are different in that they are recorded beforehand. Despite this, I still treated the production process as if it were a live situation, and, consequently, there are some mistakes I want to point out for you all. First, I refer to GRIN2B as a protein we all have, when in fact, GRIN2B is a gene that encodes our proteins. I also state that GRIN2B affects our NMDA receptors, but I continually refer to this by an incorrect abbreviation, calling them NDMA receptors. Did I mention we’ll get better at this? In spite of these obvious mistakes and a few others, I hope you’ll enjoy the podcast and the spirit in which it was intended: to connect and inform listeners. If you have comments or suggestions for future topics, or are interested in being a guest on future episodes, please send an email to phil.ash@grin2b.com, or send a tweet to @grin2bsyndrome, using the hashtag, #CelebratingRare.

To further protect myself from any unintended mistakes, each episode will have the following written disclaimer when you click on the link:

PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make every effort to double check my facts, but realize that medicine is a constantly changing science and art. I am simply sharing my views and personal experiences as a GRIN2B parent. I am not a medical professional. I welcome any comments, suggestions, or correction of errors. This entire disclaimer also applies to any guests or contributors to the podcast. Under no circumstances shall Phillip Ash, The GRIN2B Foundation, any guests or contributors to the podcast, or any employees, associates, or affiliates of The GRIN2B Foundation be responsible for damages arising from use of the podcast.

 

Accepting Our New Normal

By Liz Marfia-Ash, Parent & Founder of GRIN2B Foundation

People often ask us if my daughter, Lucy, is going to be able to do certain things. We always appreciate when people ask questions because sometimes I get the feeling people are scared to talk to us. But we don’t want anyone to feel bad or sad when our answer is generally some version of, “maybe, but we don’t know.” The truth is, no one can really tell us for sure when or if she will be able to do certain things. I can attempt to guess based on some of the families I’ve connected with online who have older children, but my guesses are not by any means set in stone. And while there are certainly days where we’re frustrated or worried or sad about what we don’t know or what we’re trying to help her achieve; most of the time, we are pretty accepting of the unknowns. They are our “new normal.”  

But we didn’t always feel this way. We were pretty apprehensive about all those unknowns after our daughter received her genetic diagnosis (a mutation on her GRIN2B gene) just over two years ago.

Since then, I have spent A LOT of time reading countless blogs and websites and articles and books and meeting wonderful people with differing life experiences, and all of those interactions have led me to some pretty life-altering realizations.  

If Lucy is someday able to mainstream into a regular education classroom, great. We’ll love her and be super proud of all she’s accomplished.

If she stays in a special education setting for the duration of her school years, great. We’ll take comfort that she’s in the safest possible environment, and we’ll love her and be super proud of all she’s accomplished.

If we get to hear her voice one day, we’ll cry and rejoice and delight in whatever conversations she’s capable of having.  

If she remains non-verbal, that won’t change anything. We’ll continue pushing forward with sign language and working on her communication device. Communication comes in many forms. The voice is just one of them. And Lucy has already proven, based on actions, that she has strong opinions and wants to communicate with us. It is our job to provide her with as many forms of alternative communication as we can.

If Lucy is able to live on her own one day or live amongst a community of adults with developmental differences, great. We’ll love her and be super proud that she’s spreading her wings.

If she lives with us into adulthood, also great. We’ll love her and we’ll be super excited to have a good buddy to keep us company in our old age.

My daughter was not put on this earth to make us feel sad or grieve what could have been. She is not here for us to “fix” or conform to some standards of “norm.” “Normal is a setting on a washing machine.” – Christopher Barzak

She was also not put on this earth to inspire us. Lucy has inspired us and those around her to believe in endless possibilities, but that is not her sole purpose.  

I believe there must be a happy medium where we will do what we can to give her the tools and encouragement to be whatever she’s meant to be AND also teach society that disability is beautiful and not a mistake and has been a normal part of human existence since the beginning of time.

I don’t know exactly what her future looks like, but I do know this:  I will NOT let my daughter’s worth be defined by society’s measure of her intelligence. Her success will not be defined by whether or not she can “catch up.”

My Lucy will be no more or no less than what she is meant to be. A delightfully curious, giggly girl, a daughter, a sister, a cousin, a niece, a granddaughter, a friend. A human being who’s “practically perfect in every way.”

CAVEAT 

Though the tone of this piece is one of acceptance and positivity, it is not meant to assume that our life is now easy-breezy and carefree (but really, whose life is?). Because Lucy’s disability is somewhat invisible, we regularly deal with tricky situations that most people may not be aware of. Since my daughter cannot currently give permission for me to write about her, I feel an immense responsibility to portray her in a respectful way and keep some of the harder stuff private. In all honesty, there will always be things that will be challenging for our family. As Lucy gets older, and the differences become more obvious, I fear the challenges will increase. My hope is we will always try to combat each obstacle with as much grace and positivity as we can muster.