Escape Artists?

Having an appropriate car seat is a must for all little humans. And the process of picking the right car seat and installing that car seat can be extremely stressful. I can't tell you how many times I had someone check to make sure I had the car seat installed correctly. I was so concerned that I had done it wrong. I even had a local police officer redo it for me, after I yanked the thing out numerous times. (I had done it right.) What I am getting at is, even having been extra cautious the car seat still wasn't entirely safe for Pandora and Jude, at least for a little while.

When every new baby gets released from the hospital they are required to do a car seat safety check. For a child with Holt-oram Syndrome (HOS), this is even more important. Their arms and shoulders aren't built the same and restraints may not fit them appropriately. What happens if they fail the car seat test? The hospital will help get you a car seat bed. If the doctor proves need in most cases insurance will help to cover the costs.

Fortunately, neither of the kids needed a car bed. Lucky us, because it would not have fit in our tiny car we had at the time. Most of our safety concerns in the car began when she was around a year old.

All kids figure out how to unbuckle or slip out of their harness eventually. Why wouldn't they? No one wants to be pinned against something unable to move freely. For HOS kids I think the want/need to "escape" is worse. They already have a limited range of motion, so when they are strapped into a car seat depending on their specific body they may not be able to do something as simple as hold a water bottle or toy. This is what happened with Pandora. She would become extremely frustrated during rides that lasted longer than ten minutes. If she started the ride with a toy and dropped it she would scream bloody murder, until she either slipped out of the harness to try and reach it, or I was able to get it for her. This meant she quickly learned how to shimmy her arms in between the shoulder straps, push the chest clip down and loosen the top of her harness so she could move around and grab those things. As parent there are a few things I felt. One, frustration, why couldn't she just stay put for twenty minutes. Two, worried, what if she slipped out and we got into a crash. And finally, a feeling many might not understand is that I was impressed, she definitely had a clear want to manipulate and manage her surroundings, and i was proud that she figured out a way. Regardless of how unsafe it was.

Unfortunately, our only option was to clip her even tighter at the time. No matter how much you explain safety to a one year old they don't fully understand what is at stake. If you are a parent of a child with disabilities and you are going through this we highly recommend reaching out to your doctor for suggestions regarding your specific situations. However in the mean time we have some tips that may help.

SIMPLE TIPS!

• For drinks, use a large water bottle with a straw that they can tilt their head into for quick mess free sips during long car rides!

• Smaller easy to manipulate toys.

• A back of the seat organizer with a phone/tablet pocket.

(This will be a lifesaver for long trips)

Where can you get help with your car seat?

Many local police and fire departments have car seat installation events where they will check your seat and install it if needed. Just call before you go or check their websites to schedule a time or look for scheduled event.

~Shauna