Taking care of them while giving them a normal life

[Bluecalm]

My 5 year old's diagnosis is pretty new ( rare chromo disorder), so I'm trying to figure out how to balance taking care of his needs while at the same time giving him a normal life. We went to the zoo with a friend and her nondisabled children, and we spent way longer than I ever do plus the kids were running most of the time. I let him run up ahead of me with his friends, still in my view of course. That evening I realized he was so pale his face was white with dark blue circles under his eyes and blue lines in the crease from nose to mouth. I gave him a breathing treatment and after that and resting his color came back. Then I noticed his arms were covered with a rash. I have no idea what plant he might have touched. I felt so guilty.

I know next time I need to let the other moms know we can't stay too long, and he'll need breaks. I just want him to have friends with the least restrictions. He may have asthma, being followed for it, and uses a nebulizer. At church one of the youth leaders was having him race around. He'll stop running if he's coughing, but do I tell adults not to let him run, or  let him do things and learn his limits? I feel like I'm an overprotective mommy if I hover over him all the time, but a bad mommy if I don't protect him.

[mandee1503]

Maybe try limiting the activity now, while he's so young. And as he grows, he can figure out his limits on his own.

[dawncs]

If you have not done so, I recommend using http://www.google.com/ to research his disability. A number of rare diagnoses show up on Google for sure with some of the trusted medical websites attached to either .gov (government) or a medical hospital. There maybe a support group in general for it in some cases. It is always worth a try.

[Bluecalm]

Thanks. He's registered with two groups and I'm on some fb groups.

Quoting dawncs:

If you have not done so, I recommend using http://www.google.com/ to research his disability. A number of rare diagnoses show up on Google for sure with some of the trusted medical websites attached to either .gov (government) or a medical hospital. There maybe a support group in general for it in some cases. It is always worth a try.

[gma12.1]

 It is a balancing act that is for sure. You will get there. Just limit the amount of running time he gets with a rest, you will know about how long he can do those things then after the rest he can go back and play some more. I'd tell the adults that deal with him when you aren't around what you want them to do for him. You aren't stopping him from being a kid you are just adjusting it a little. Going to the zoo is a trial for any kid, they get overly excited, they want to hurry from exhibit to exhibit, they want to see everything. I've seen parents at the zoo with typical children that make their kids stop & take a rest. Mainly I think the rest if more for the parents sake than the kids but still it is a rest time. Also if you and your friends realize it will take longer to do a large outing like that then you and them will know that you will have to allot some extra time. Some of the things that you will do won't make a difference if you have break times in there or not just the excitement will be enough to cause some of what you saw after the zoo outing. My lo gets overstimulated and even taking her out and allowing her to decompress or even leaving and going home she is still stimulated enough that it takes longer to get her to go to sleep, she is pale, she will be restless most of the night, and on a couple of occasions it has triggered a seizure (that is very rare tho) I can't not take her to those events just because of what I know will happen all I can do is watch her for the signs that over stimulation is beginning and take the appropiate action. She gets to do the things that most kids do but with some adjustments. I had a hard time at first too, even before her diagnosis. Now that she has made progress in areas of gross motor skills I've had to allow her to do things that other kids do and there are times that I cringe when I watch her play, she doesn't have real good balance at the best of times and when she gets to really playing & running she has a tendancy to fall down. She also doesn't watch where she is going and has run right into things once it was even face first, most of the time it is her shoulder or trip over very obvious things that most kids would've seen and dodged. I've had to let her do that and then treat her as I did the other kids and not make a big deal out of the fall, unless of course she really hurt herself. It has taken me some time to be able to do that and you will get there to. Lina is 9 with the cognitive ability of a 4-5yr old, she too has a rare chromo disorder and we have no idea what will happen next health wise but I can't stop her from being a kid even when I want to. I used to hover and now I try not to, I find myself doing it still. Like right now we are going thru a rough patch with her seizures and the aftermath and she scares me to death right now but I've had to let her go out and play on the days that the weather has allowed, I just go outside and sit on the porch and watch her play. She isn't allowed to be outside alone but she isn't stopped from playing how she wants.

[jjamom]

I tend to be a little overprotective too, but at the same time I try to let my son have fun when with his typical peers. It is hard to balance sometimes, I agree. He has low muscle tone and core balance issues for example, so at parks, I find myself following him up onto equipment at times, for example. He also has a lack of danger awareness, so sometimes I have to be more cautious around water, a campfire, opening in playground equipment where there is a fall risk, etc.

I would talk to the people at Church (and snywhere else he may be under someone else's supervision) and make sure they know symptoms to look out for to be sure he is not over-exerted or beginnkng an asthma attack. Make sure they know what to do if he should have an asthma attack while in their care. I had bad asthma growing up and was not able to participate in certain activities and it was a bummer at times. But, I was otherwise healthy, so I know that can make a difference in how to handle things.

Good luck!

[darbyakeep45]

Hugs mama!  I know this must be hard to find the balance.  

[MicheleJM]

I think you have to find a balance even with typical kids because they too can get into things they aren't supposed to, or tired.  I once had my ds get a full body rash from what to this day I don't know.  And he does wheeze when out in the woods or camping so I make sure he takes his inhaler and his Zrytec with him.  I agree with what others say...watch for overstimulation, make sure he rests, takes breaks, and warn anyone who watches him or is with you about these needs.  It's a balancing act with any kid.

[Bluecalm]

When I saw my friend at work today I told her how much fun we all had, but mentioned that he was super tired afterwards. She told me her girls were really worn out too and that next time we won't do as much. That was easy!

[sammygrl77]

That's great! Makes it much easier for you for the next time.

Quoting Bluecalm:

When I saw my friend at work today I told her how much fun we all had, but mentioned that he was super tired afterwards. She told me her girls were really worn out too and that next time we won't do as much. That was easy!

[CameronsMommy23]

I was really overprotective of my special needs kiddo too in the beginning! I was so worried he'd get hurt. As he got older I realized that I had to let him live & not watch from the sidelines. I make sure the school staff and all other adults in his life know what to watch for and we teach him how to take breaks and ask for help when he needs it. You can protect him and empower him but you can't be there all the time. In our experiences so far our friends are very understanding if we need to tweak an activity for him.