Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts

Wednesday, July 5, 2017

10 Tips for Parents of Children with Physical Disabilities

I was asked to write a list of "10 Tips for Parents who have Children with Physical Disabilities", so I went back through some of my previous posts to find the messages that I feel are most important. These are the few that really stuck out for me, and I hope they will resonate with you as well!

Tip #1 - It takes strength and courage to raise a child with a physical disability... but you can do it! It is an enormous responsibility, yes, but the challenges are far outweighed by the joy your child will bring into your life.

Tip # 2 - Focus on your child's strengths. Put emphasis on what your child can do, instead of what they cannot do. They may do things a little differently, but that's ok! Be open to your child doing things in a way that feels most comfortable to them.

Tip #3 - Remember these important F-Words: In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six 'F-words' that the authors claim should be the focus in childhood disability. They believe, as I do, that we need to move away from the concept of “fixing” disabilities and focus instead on Function, Family, Fitness, Fun, Friends and the Future!

Tip #4 - Don't sweat the small stuff. You will realize soon enough that there are plenty of things you have to fight for, so you are going to want to pick your battles. Avoid any unnecessary arguments and save your energy for when you really need it. Remember, you have a limited amount of time and patience, and you can't afford to blow it on stuff that doesn't really matter. Equal treatment and inclusion? Totally worth fighting for. A few toys left around the house? Not so much.

Tip #5 - Take care of yourself! While your life may be consumed with meeting the needs of your child, it is important to recognize the need to look after yourself as well. Having a strong support network and taking time to do the things that make you happy are necessities when faced with the complex and challenging yet immeasurably rewarding job of raising a child with a disability. Feed your soul. Put on your own oxygen mask first before assisting someone else. Those flight attendants know what they're talking about!

Tip #6 - Find your tribe. Connect with other parents and families who are facing similar challenges. As a parent of a child with a physical disability, I know how important it is to connect with others who can relate to what you are going through. No one truly understands the physical, emotional, social and practical challenges of parenting a child with special needs better than another parent.

Tip #7 - Let your child be your teacher. There is so much that we can learn from people with disabilities. They teach us to slow down and appreciate the little things. They teach us about compassion, joy, and unconditional love. They teach us that sometimes life doesn't go exactly as planned, but that it can end up being even greater than we could have imagined!

Tip #8 - You are the expert on your child. No one knows your child better than you do, so while reading a medical file may tell you about their disability, it does not give a complete picture of your child as a whole person. As their parent, you are able to provide real-life insight on how their diagnosis affects their day to day life. I hope that parents feel empowered with this knowledge, and feel comfortable expressing their thoughts and feelings to health care professionals.

Tip #9 - Some days will be hard. Really hard. But you will get through it. I won't deny that I do struggle and it does hurt sometimes, seeing my child go through all that he has had to go through because of his disability. It is hard for a parent to accept. But whatever pain I have felt is far surpassed by the joy of each moment I spend with my son.

Tip #10 - Focus on the positive, and think of all the things you are thankful for. Life may not be going the way you had planned, but that doesn’t mean it can’t be awesome! Find happiness in your child, and that will get you through anything!


This article also appears on yoocan.com - the global empowerment site for people with disabilities.

Saturday, April 2, 2016

Baby Riggs

A couple of months ago I received a beautiful email from a Mom whose young son had just been diagnosed with CP.

Jennifer said: "My baby boy was born 15 weeks early, weighing in at 1lb 8.5oz on September 22, with his due date of January 6, 2016. He was almost an hour without breathing when he was born, and on his second day of life, he had 2 brain bleeds - one on each side of his head. Yesterday we were told that he would have severe cerebral palsy. When looking online for support groups in this province, I found your site. I read each and every "Tulip Tale", and each one made me realize just how lucky we are to have Riggs, and how special he really is."

Jennifer and her husband, Steve had tried for ten years to get pregnant, before they were blessed with their precious baby boy.

Just over a week ago, on his six-month birthday, Jennifer wrote: 
"6 months ago we were in complete shock, and upset. We didn't know if Riggs would survive, he had a very, very hard start at life. The last 6 months have been a very bumpy, rough road, but every single day he amazes me more and more. Riggs you are mommy's entire world. You are who you are supposed to be, and you have given me the most blessed life lessons."



I was saddened to learn that baby Riggs took his last breath last night, in the arms of his Mommy and Daddy, and surrounded by his loving family.

Jennifer, I do not have the words to tell you how incredibly sorry I am. I cannot even begin to imagine what you are going through. I know that you will likely live with the pain of this loss every moment for the rest of your life, but I hope that you will also live with the joy and love that your sweet baby brought to you. You will always have that love, and the bond you shared will never be broken.

Remember your boy. Remember every detail, every expression and every sound he made. Celebrate his life, and know how many lives he has impacted.

Riggs was a fighter and a hero. Jennifer said, "He fought harder than anyone I have ever known, and I lost both of my parents to cancer."

Losing a loved one, someone who made up your whole world, will burn you into a million pieces. There will be darkness, and you may be overwhelmed by the rawness of emotion. But, there is also light in the process. If you give yourself permission to mourn, knowing you will rise from the ashes, it will allow you to break and feel and truly process the unimaginable loss. And this allows for hope.

Jennifer, I wish you and your family much love, strength and hope. May your son's memory always be a blessing.

My sincere condolences to your family.

 

Friday, January 1, 2016

Best of 2015

2015 was a big year. For us, it was a year full of health and happiness, growth and opportunities.

At the end of each year and the beginning of a new one, I love to reflect on all that has happened and to take stock of what is going right, what needs work, and determine where to focus my energy in the year to come.

Glennon Melton posted the following today on her 'Momastery' blog -
"I don't want a new, better life in 2016. I just want new eyes to see that my life is already staggeringly beautiful."

I agree wholeheartedly. I can honestly say that I am in a place right now where everything seems to be just right, and I wouldn't change a thing.

It was hard to narrow down my favourite photos from 2015. There has been so much love, light, happiness and growth. This wild, beautiful adventure of life has offered so much to my family. Here is just a glimpse of our year in 2015!

Read our story in The Herald - HERE 


It doesn't get much better than this!

I am so thankful for my beautiful family, and my darling little boy. To be a part of his life is a privilege, and I couldn't be more proud.

Thank you to everyone who continues to believe in me, and pushes me to better myself and be the best I can be. Thank you to those of you who are on this journey with me. My year would not have been the year it was if I didn’t have the support of people like you, so thank you for all of the love and encouragement!

I hope that 2016 brings much peace and happiness to all of you! Happy New Year!!!

Love, Julie xo

Thursday, October 1, 2015

This is Real Life

This was one of those days where it just seemed like nothing was going right. We had plans to take Brennen out for the afternoon, to pick strawberries and to enjoy the last of the warm Summer sun, but he was having no part of it. It was just too sunny, or too windy, or too something

There are some days when I am harshly reminded that my life isn't going anything like I had imagined it would. I remember being a young girl and playing "house" with my dolls, pretending they were "the perfect family" - a generic Mommy and Daddy, a little boy who loved cars and trucks and a girl who practiced ballet. Both children smiled in photos, and they drove a funky convertible.

I think there is a point in parenthood (special needs or not) when you realize that nothing is perfect and that every day you wake up there will be challenges. Real life is so much more complicated and challenging / beautiful and rewarding than I could ever have imagined it would be. 

I am blessed with two great loves - Andrew and Brennen, and we have a family that transcends anything I could have dreamed up as a child. Sometimes life is hard. Not because we're doing it wrong, but because it's supposed to be hard. This is real life. Sure, we don't drive a convertible, but we have a pretty cool wheelchair van, and we are enjoying the ride!


 Thank you to Andrew Smith for these beautiful photos!