How do you keep a DeafBlind child safe in a vehicle?

posted in: Kodiak My Little Grizzly | 15

HELP!!! I refuse to beg! BUT NOW IT’S GETTING OUT OF HAND! I hate asking for help. But I keep getting dead ends!

I did not want to post this. I’m afraid to post it! Please don’t incriminate me… We need help! My kid was restrained but gets out! I’m afraid now to go somewhere alone with him! I was on the interstate going to his Doctors appointment and suddenly I was kicked. I looked quickly to see him slouched down so the lap and shoulder belt was under his arm pit and his feet were everywhere. On the ceiling, window, kicking in the air. I pulled over like 6 times on the way there. Just to readjust him. I put the child lock on because he unlocked the door and opened it. Then he opened the window. I locked it as well. The next thing I knew as I was trying to find the clinic was he flipped himself out of the seatbelt and was flopping around in the 3rd seat in the way back. At least I was now in the parking lot. Booster seats don’t help he flips them out and they become a thing to toss around. NOT SAFE!
The trip home was no better. I’m freaking out.

So I sat down and called FORD. Again! I’ve done this like 3 time in the last 4 months. But they keep telling me they don’t know what I’m looking for. Today I called the only customer service number I could find. They told me to go on belteze.net. that the only thing they know about is lifts for wheel chairs or seatbelt extenders (for very large people) that is NOT the issue here. SO They passed me on to Joshua in marketing. After listening to my problem and today especially he said there must be something out there as surely I’m not the only person with this issue! But the only 5 point harness things he knows about is race car driver restraints. They at not legal on roads!!! So he transferred me to a lady in FORD MOBILITY MOTORING.

Ok so right about now I’m feeling so over whelmed. No one has anything to help. Anyway this lady was listening and I’m beginning to crack. I had tears in my eyes as She told me they only cover up to 1,000.00 of modifications but here’s the catch “on NEW vehicles ONLY” so forget anything getting installed in my 2001 FORD EXPEDITION. I feel really defeated!!!

So now I’m frustrated. I keep trying to go on the website she told me to go on but it says it’s temporarily down…
www.fordmobilitymotoring.com is supposed to have local installers that could find someone to add something to make it safe.

Again! I’m so frustrated! I know there are other parents out there that can’t keep their tween special needs child buckled in safely. If anyone can help me find the resources… His waiver would help pay for it. His social worker is running into dead ends as well.

I’m trying to abide by the law! I should NOT have to pay for this. But I can’t tell Kodi why he needs to stay in his seat and stay buckled. I’m freaking out. I know what will happen if I get pulled over. I know if a police reads this they will haul me off. But I need to express this need. We are TRYING to get the proper legal restraints and NO ONE knows of anything we can do. I have been working on this for 2 years knowing he was going to grow out of his seat.

My other problem is after stopping several times and re-positioning him… He would then slam his head against the door or window. He needs to be in the center seat belt but its only a lap belt and that doesn’t work well either. He still slinks down. He was behind me at first. But I moved him to the other side so I could see him sooner. I’m telling you I’ve never felt so desperate for someone to be with… Usually one of the other two are with and keep him in place… I thought of putting him up front in the passenger seat so I could use my right arm to keep him safer. But that’s illegal as well because of airbags.

Oh! And never let them have their blind cane with them in the car. I accidentally let him have it in the way home and he hit me on the head. I saw stars! I had to take that from him right away.

If you are in any of these departments police, schools, bussing, special needs kids, restraints for autos etc…

Please point us in the right direction! I will not be able to safely transport this kid alone until we get something to help us. I can’t afford a new auto. I need something large so I can transport his stroller to places that require a lot of walking. So I’m stuck and feel really scared!

I was told to try the www.nhtsa.gov site…

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15 Responses

  1. I would have him wear a helmet every time he is in the car. Just a suggestion..

  2. I found this website on a message board. http://www.eztether.com/ I did see some other parents asking about this. It seems like this happens sometimes with children who have ASD, so perhaps an Autism organization would have some helpful information. Good luck!

  3. Andrea Osorio

    I looked on the internet I don’t know if it will help but this is what I found a Churchill car seat looks like the straps are behind the seat so he may not be able to get out, then I saw ez on adjustable vest that you attach something to the floor of the car that the best hooks to that’s on the Web site Patterson medical. But then if you type in automotive safety program the have a part special needs transportation, there is alot of people listed that you might be able to call. Good luck.

    • Kodi had the ez on but we need factory anchors in the truck I guess and not legal in WI or MN roadways unless you drive a bus… But I will keep looking… Thanks so much for your help… šŸ™‚

  4. Teresa Dafft

    We have a friend who’s daughter is an escape artist and they tried several things….used angel guards to cover the release buttons and the got her an adult car seat (called gorilla carseat) that has the harness. They also attached elastic bands like the ones used to attach toys and zippy cups to strollers so that she has toys to try and explore…thus forgetting about escaping. She changes them so it is a new experience.

    • Gorilla carseat??? Ok I will google it… Hope to see if it will work…. So awesome thanks so much for your help!!! šŸ™‚ I will let you know what I find out!

  5. http://www.especialneeds.com/special-needs-carseat-britax-standard-traveller-plus.html could something like this work? goes to 105 pounds w/ a 5 point harness… we’ll be following your adventures as I know our own little “Bear” (Mason, also deafblind) will encounter many of the same challenges as he grows… thanks for your blog! Jen

    • I have a friend that has these seats… However my sons seat is not the problem weight wise…. The problem is he’s only 50 pounds but over 4 feet tall now… So they are too small and he has to scrunch down and it’s not comfortable anymore. Boosters with backs are not enough either.
      How old is your little mason? I’m sorry to hear he’s also DeafBlind. It a difficult thing to hear. We are here… If you are in the USA we have many links added to our site to point you in direction for your area. I will follow the lead you sent and see if the company can help with those problems we have. šŸ™‚ thank you!

  6. Hope you are able to find a good solution … knowing the problem is more the height not the weight, I did see this one there too which has an adolescent size and harness…http://www.especialneeds.com/columbia-medical-therapedic-positioning-car-seats.html . Thanks for the all the great links. Reading your son’s story…I have cried a lot. You guys have been through so much. You are all so resilient. I pray for relief of his eye pain. My son will be 3 in August. He does not have CHARGE but many features of it. His story is here: http://www.masonjosias.blogspot.com

    • I’m so thankful for your links… šŸ™‚
      I’m so sorry to bring you to tears… Maybe because you are dealing with similar things I get that! I tell my kids…. Life is getting from one happy photo moment to the next… There’s a ton of STUFF in between that can knock you off your feet. Thanks for your blog… I will check it out!

  7. It looks like you have a lot of great options here for sweet Kodi but here is one more if you are still looking http://www.especialneeds.com/ez-on-adjustable-vest-family-vehicles-car-seats.html . Good luck!

    • I do have that info… We are working on adapting things because I don’t have the correct hardware… It’s all soooo complicated…! Thank you so much!!!! It’s will be helpful to others like him as well… šŸ™‚