You’re No Burden, I Assure

You’re No Burden, I Assure

One day running errands with Chloe in her wheelchair and carrying my baby Sam, a very nice lady stopped me to chat about Chloe. She ended by saying, “thank you for carrying such heavy burdens and still being such a happy person.” I know she meant that with all the compassion and empathy in the world and I certainly wasn’t offended, but for Chloe’s sake I wanted to just shout from the rooftops that she is not a burden! These lyrics came to mind: You may need me to carry all your weight, but you’re no burden, I assure. You tide me over with a warmth I’ll not forget and I can only give you love....
Toy Like Me

Toy Like Me

Have you heard of Toy Like Me? It’s a campaign for ran by parents of children with disabilities promoting change in the toy industry to better represent disabilities. And the toy industry better watch out because if there is a group of people who are patient, persistent, and willing to never stop fighting for what they want, it’s special needs parents! And what a great idea! According to an article on Upworthy, three parents came together and decided their children (one in a wheelchair, one who is deaf and visually impaired, and one who is blind) decided their children needed their assistive accessories to be represented in the toy world to make them feel comfortable and promote positive self image. They made a prototype doll with a cochlear implant, which they shared on social media. The image was shared enough that one week later, a toy company contacted them to take their idea and run with it! There are dolls and a current push for Lego to catch on to the idea. Read the full Upworthy article here. Both of my children, Chloe with special needs and Sam who has no special needs but has a sister with special needs and is exposed to special needs often, love to see pictures of children in wheelchairs in books or toys with special needs equipment (we have a teddy bear with a wheelchair), or when there are children with special needs on one of their favorite shows (Sesame Street does a pretty good job of featuring children with special needs in their episodes). Whenever there is something that reflects those unique aspects...
Special Needs Babywearing

Special Needs Babywearing

This is something that’s relatively new to me! Bear with me, we are all going to learn a little something new here! Last summer we decided that we wanted to start doing all kinds of fun things with our kids. They are a little older, almost all of them walk where you want them to (where you want them to is the kicker) and it’s time to start making memories! There is a place in one of the canyons not very far from me called the Fairy Forrest. People paint rocks and bring them to this little area in the woods a bit off the beaten path where they create a kid of fairy community. Fun! Then I recalled what I read, something about a dried creek bed? Not so dry some parts of the season? Might require some rock jumping or wading? Errr… wheelchair friendly? Not so much. Or what about a cave adventure! There is a cave a couple hours away that we went to with some of our friends back when we were dating. Shoot, that was AGES ago! How fun to take the boys into a cave where they can kind of skip along a marked path, looking at amazing things and learning a little on the way. Yay! But stairs… like a hundred stairs down into the dark earth. Oh my… no stroller in this area. Will my boys ever do any fun adventures again? I started to look into baby wearing, specifically for large children. I was not looking for a mega back pack from some outdoor retailer. (Besides, the weight limit on...
Just Because

Just Because

Sam has recently become obsessed with this book, Just Because by Rebecca Elliott. It’s about a little blonde hair blue eyed boy whose older sister is in a wheelchair. The little boy loves to lay by his sister, laugh with her, look at books with her, be outside with her, pretend with her, and dream with her. The boy doesn’t know why his sister is in a wheelchair and doesn’t talk and has curly hair….just because. Sam makes me read it to him at least 10 times a day. I recently found him sitting on the couch hugging it…..just because. Chloe also loves the book and gets excited when the brother and sister pretend the wheelchair is a rocket and go up into space! Rebecca Elliott has another book about the same siblings and hospital visits the sister has to make, Sometimes. It is also a very sweet book and both of my kids like it a lot. I think these books will become more and more important as Sam matures and understands the many things that make his sister different and can see pictures that look a lot like his life in a fun, happy book. I’m grateful he already understands it enough that reading the books is important and special to him. I can’t recommend these books...
In Case of An Emergency

In Case of An Emergency

I worry quite a bit how my family would respond to the fire alarm going off unexpectedly. Would they freeze, would they hide? Which ones would respond appropriately? My seven-year-old has been known to cry during drills at school, he cannot process the loud noise… and he is one of my typical children! One of my friends recently scared the pants of her five children by intentionally setting off the alarms and having a drill about an hour after they had gone to bed. She said it was frightening to see that some of them just froze! I thought this was a great idea and I plan to scare the pants off my children in the same manner sometime in the next few months. But if I am worried about my typical children, what about my sweet daughter who may forever function on the level of a one-year-old? What if there is an older individual under your care? Many cities have programs where you put a sticker on the home windows of people who are impaired in some manner and might not be able to get out of the house on their own. I know my state has a registry as well. You might want to see if this is a service available to your family if this is a concern. A simple Google Search shows me that there is likely one for every state. But what about car accidents! What if you are unconscious and someone comes to help your special needs child. How will they respond, what will they do? There are a few different medical alert...
Welcome To Italy

Welcome To Italy

Most parents of children with special needs become very familiar with the essay, ‘Welcome to Holland,’ at some point during their unexpected journey. If you haven’t read it, well, you better so my post will make sense to you! You can find it here. Shannon’s recent post, Deciding to Have More Children After Your Special Needs Child, made me reflect on the years of worry we went through deciding if and/or when we would have more children. Chloe, our daughter with cerebral palsy, was our first child and our only child for over six years. Although I got pregnant with Chloe easily and rather unexpectedly, I had a difficult time getting pregnant again. And even though infertility is a heartbreaking experience, there was a small part of me that was relieved when I would discover that I wasn’t pregnant month after month because I was not really sure how we would be able to meet the needs of another child. But, in the end, the heart wants what the heart wants and we were blessed with another pregnancy and another baby. My baby, Sam, has been surprising us since the moment we found out I was pregnant with him! I was actually at an infertility clinic being evaluated when it was discovered that not only was I pregnant, but I was 11 weeks pregnant! Happy tears were shed not only by myself and my husband, but every staff member in the clinic that day. It isn’t often that they get to see a little baby profile on an ultrasound and they were just as shocked and thrilled as we...