Parenting with Ataxia

Hi everyone!

I was just wondering if anyone can help out with some input or ideas :) I'm 25 with Friedreich's ataxia and I have a 1 year old son. There have definitely been some obstacles being a parent up until now with FA but nothing I couldn't deal with . Now he is able to walk and getting quite good at it! (getting better than me) and almost running. I'm starting to worry about him getting away from me and me not being able to catch up to him, I've feel bad keeping him strapped in a stroller because I can tell he just wants to get out and walk. Has anyone else had experience with this or have any ideas?

i don't have any ideas that would help but wow, that is quite a problem. Are you single-parenting or is there another adult in the home some of the time? Do you have any family members who can share in the care and supervision? I wonder if there are volunteers, any kind of support networks for the disabled or for supporting families with special needs. Any parent has their hands full with a kid that age and it sounds like yours is a bit advanced developmentally. I can imagine your feelings about keeping him strapped in, but clearly he has a very loving mom who is doing what's needed to keep him safe, and that is the best thing any kid can have. The only ideas i have are to find other adults who can be with you and help to supervise. I imagine there are volunteers (and certainly paid people) who would do that. It would be a matter of finding them, and if needed, finding funding sources. i wonder if there are volunteer attorneys who specialize in ADA matters who might know of solutions that have been used.

I’m not sure which ataxia I have but have had it since a year after chemo I have two sons one just about to turn two. I have lost the ability to run so I have learned to keep a very tight hold to hand I also try to be completely aware of my ability that day if it’s a bad day I just won’t even try. My son got out the door one time thankfully my husband was home and he had to chase him down we live on a big hill so it was nearly impossible for me to get close I did try. I know it’s hard but sometimes doing what is safest for them is the best. I know not the greatest advice just letting ypu know you are not alone.

I think if safety is the main concern i would try a tether between you. A lot of people dislike them because it looks like your teating the child like a dog . Jerry

There are very cute little harnesses for children now. We had one for our grandson and he loved it. It had a little monkey that rested on his back.
Don’t worry about the people who disagree with a “leash”. Better a safe child than a hurt child! Of course, this was for when we went outside. For home, your child is at the age when he requires constant attention as a one year old cannot be trusted… So this is more difficult for you! And short of telling you to put him in a daycare (no offense I hope), I do not know what to tell you. When I had my stroke which triggered ataxia, I realized I could not be trusted alone with my then two year old grandson. Fortunately, when we babysit him, my husband takes great care of him. It was very upsetting for me, so I can imagine how you feel as his Mom.
Best wishes to you!

i was also going to mention a tether---a long one for inside the house perhaps, i don't know if you can buy long ones or if you would have to have it custom made, but it could achieve some compromise where he would have more freedom of movement while you would have more of the control he needs you to have.

When i was a little kid, in the early mid 1950s, i was quite active and adventurous. My parents had a "leash" that i wore when we went out, like in department stores or the train station. Personally, i thought it was fun at the time. I loved doggies and was glad to be treated like a puppy. I remember it was pink.

For my dog, i have an extendable leash. They come in different sizes. His is 26 feel long. When he comes closer to me, the mechanism in the leash holder takes up the slack so that the leash is not loose. It's not rigid, it's very flexible, it gives him lots of freedom, while i have the control to keep him safe. that's why i got it, to give him the chance to exercise and to run, as much as 52 feet ( from one direction to the other). He weighs about 25 pounds. I can control how far he goes or doesnt go with the push of a button with my thumb. I can click it so that it stays in the close position if i want (about 3 or 4 feet). He is the kind of dog who, if left free, would run off.

Some will stay with you without a leash but not this dog. Inside your house in particular, maybe something like that would be helpful. You can rein him in or let him go various distances of your choice.

A long tether would be nice but could be dangerous out of sight as it could get around neck or body part and cause loss of blood flow. Jerry

First of all let me commend you for doing what your doing. That is such a hard job your doing there. I don't have any small one's but I do babysit for my Grand daughter only once a week. I definitely would have a really hard time everyday.

A few tricks I use and have been using are (she's 2 12 now but started these when she was under one) I have a set of Baby Enstine video's that can make her get interested and sit for a little bit. The other things I do is have 3-4 projects for her to keep busy with. Coloring in her high chair (she still uses it but almost grown out of it. I'll have to think of something new soon to keep her in one place for long. She's a mover too!). Old Costco boxes that she can sit in and color all over the place will keep her busy for a while. Then I entice her with other projects, glue sticking die cuts, sticker's etc to paper anything we find along with anything even rocks if we have gone out. I try to have things ready before she comes (a plan) but I leave room for her changing it so I can just go along but still direct her.

We live in a Townhouse with a little enclosed back yard which really helps. She can get out a bit in the air but she's contained.

I find if I can keep her interested she actually goes along and makes it easier for me to sit and rest while she plays. I also have the wii Nintendo system. I got this game "Grover" with two remotes. We both have one and hers doesn't work only mine does. She sits or has to act out (fun movements like exercises but doesn't know that's what she's doing. She's getting energy out). There is also a exercise game they have to move the remote to push a ball up a hill and other physical games that help. That one is called Wii Fit by nickelodeon which has different levels.

When we go out I let her do a 50 yard dash or so. Run up to that parked car and back as fast as you can. Then again, then again etc to wear her out and get exercise and fresh air too. We do some of the same things over and over each week she fine with it. It keeps her busy.

When we go somewhere so she doesn't run from me (cause she's a runner and that worries me at times) I make a game out of it. Can you hold Gram's hand (before when she needs to) when we do..........................

I get allot of idea's on Pintrest. Have you gone on there yet? It's wonderful. You can find anything any idea. It's free to sign up.

Good luck. Try to stay one step ahead of him, and anything to make her want to listen to you and come back to you works.Sorry but even bribery. If you do this then when your done I'll do this.

It works for any age! hahahahhaha keep your since of humor above all! :0)

Jerry, i agree, would not want to use it out of sight or at too far a distance. A one year old shouldn't be out of sight anyway, but the good thing about the flexible leash (retractable) is that depending on how far the dog (or whoever) is away from you, the leash holder mechanism takes up the slack, and whoever is being cared for with such leashes would be in view in order to know what's going on. Whether there would be enough slack in the leash for a child to get it wound around him would be the choice of the one controlling the leash. it automatically takes up the slack but monitoring is needed. Those leashes come in different lengths. The one i have is the longest. I think the shortest might be 10 feet fully extended. As i picture it, the child might wear a harness of some kind and the leash would be clipped to the back on the harness, not near the neck and not in a position where it would wrap around the neck. I'm not sure that this would be a solution. Just a possibility to consider to solve the problem of a strapped down one year old, but the most important concern is that he's safe and his mom is keeping him safe by strapping him.

Here's a video showing this kind of leash

I have cared for my grandson full time and part time since he came home from the hospital. He’s now 4 and I have him once a week. We have such a strong bond that I can trust him to mind my instructions in public but when he was one and just walking this wasn’t so. I also have another grandchild I took to the park and realized she could not only out run me but wasn’t going to come back. It was scary for me but worked out OK. She’s nearly 2. Planning ahead is the best course to avoid dangerous situations. I also used a kid leash when my own kids were young and recommend this with some kids ( I had an especially active one). But kids do need to be able to run free and exercise muscles. Bringing someone with you makes sense, another parent or friend. Churches may be a good source of both financial assistance and finding someone who might like to assist on outings. Talk to the pastor or priest. I spent a great deal of time talking my grandson into doing what I wanted when he was young as I could not carry him. It meant taking more time than if I had him every day but has resulted in a very strong bond. One caution: I fell once while my grandson was in his bouncy chair out on the patio with me. I was trying to reach something. I landed on the concrete and hit my head. Had I broken something, or passed out he would have been all alone, and it could have been very dangerous. I live alone and no one would have found us. Fortunately I was OK. I decided I needed to be wearing an emergency call pendant. This might be something a local church might fund for you.

Hi Lindz the first thought like many was a leash or walker harness. I don't have young kids but I do have 2 teenage stepkids so I missed the worry of the young ones running off stage! When my mum had to care for me during my wheelchair mode as a kid and teenager my youngest and middle brothers where what I call runners. The worst was if we decided I wanted to try walk to exercise they would somehow unbuckle their buggy belts and scoot off running For the less active one she would use a wrist leash sounds awful but it was very comfy for him in fact he loved to wear it as gave him leeway to walk around a bit and not have my mum have to chase him down road. For the youngest brother who was a real wriggly worm and very fidgety she had what I want call a body harness with shorter length so that he couldn't go everywhere she preferred the body harness in busy areas, i.e main roads, shops and high traffic areas, then used to wrist harness in wide areas i.e parks, open fields sometimes in restaurants while outside eating.

I'd suggest the walker harness at first so your little one so he can't wrap a leash round your legs then when he's used to that and then slowly work with the wrist leash so he gets used to how far you can tolerate after a while kids just adapt and the wrist one ends up just being like a loose tether they walk naturally without pulling and enjoy knowing they have their mum/dad or grandparents so close guiding them with a lil tie.

Can always if inclined to doing crafty stuff sit with your son and buy decorative sparkly glue or iron on patterns and customize it with your lil one. Mum did that with my brothers and they ended up with a unique harness they were proud to show off and say look what me and mummy did to my leash or can get the crayola kids pens and make some patterns on it know looks messy but kids love drawing on things. I've seen a lot of parent's use them some are like how can you do that? To me the childs safety is more important than the freedom to just bolt and when your disabled or in busy areas it isn't always possible to catch a toddler on the run! I applaud you as a MUM for dong the hardest job on earth and even more so being disabled your son has a wonderful mum looking out for his safety.