Moms of special needs kids.....

I can totally relate to you hun. My daughter will be 17 in 2 weeks. She wasn't diagnosed with anything specific, but she has been labeled with moderate cerebral palsy, severe global delay, and they threw in a little autism but I'm not sure if that's because they can diagnose it with her or if it just helped get extra funding to her school. Anyway, I totally understand how hard it is to take care of yourself while your so busy taking care of everyone else. While I can't give you any sound advice for your particular situation I can say that you need to keep yourself healthy so your able to give your all to your kids, house, hubby. It's difficult but you will find that balance.

I am here with you doll. And I know we can do this! Stay strong and add me or message if you need a shoulder or to vent. I may do the same! :flowerforyou:

I have been really thinking about my weight gain and things that relate to it. I am a mom of two special needs kids. My kids are 19 and 14 and have a very rare neuromuscular condition called Congenital Myasthenic Syndrome. I have been their primary caregiver since they were born. I went through a nasty divorce with their father and was a single mom for three years. Taking care of them and putting their needs first, I forgot about me. My weight has gone up since then. When I met my current husband and we got married he helped me with their care but I still do the majority of the work. It is really hard for me to put myself and my health first. It's always been me making sure they are taken care of. I feel exhausted in general when it comes time to exercise. I push myself because I know I have to do this. My hubby and I have opposite work schedules so when I get home I'm making sure the kids and house are taken care of....then me.

I was wondering if any other moms can relate. This is a struggle for me and I am working to find the best solution.

I am not being judgmental, but look at things this way. If you do not take care of yourself and be healthy, who will look after your children. I know we all want a clean house etc, but as long as the bathroom and kitchen are clean, take that extra time you would on cleaning other areas of the house and do something about your weight situation. 30 minutes of exercising from a DVD every day may seem a lot, but within a couple of weeks you will be feeling so much better. Start researching healthy recipes to cook, cut back on sodium, processed foods and sugar. Get yourself a pressure cooker and slow cooker, both will save you lots of time in the kitchen. Start logging your food.

I am a stay at home mom to a 2 year old with 18 p deletion syndrome (or 18p-). He is missing part of one copy of his 18th chromosome. He has hypotonia (poor muscle tone) causing delayed motor skills. He didn't walk until 18 month, still doesn't run or walk up or down stairs, etc, and loses his balance easily; he also is extremely delayed in his speech with only 3 or 4 SOUNDS he can make, and 2 or 3 signs with help. The frustrating thing is that most of it is still considered "developmental delay" even though it is caused by the deletion and he may never run or talk clearly. (Sorry, that almost turned into a rant; we're still adjusting to everything with his recent diagnosis).

Is it harder for me to work out/take care of myself because of this? That's hard to answer. I often have to get up and out the door between 6 and 6:30 a.m. to work out before rushing home to take my 10 year old to school. I'd rather be in bed (and too many mornings I make that decision). And other mornings my husband has to leave by 6:30 so I just can't go. (He works full time, evening shift, plus is finishing his college degree).
Taking care of my two year old can be emotionally draining - more than a typical 2 - because he has no speech to tell me what he wants and pointing only goes so far in the communication, and when I'm emotionally drained I'm more likely to make poor food choices, like putting off home-made stew in favor of frozen pizza for dinner. :laugh: I'm also a stress eater, so added stress makes it harder to bypass the cookies in the cupboard or whatever.
Add to that the financial strain of me staying home (rather than trying to put him in daycare). Since he's not officially disabled yet, we aren't getting any disability benefits (we've applied, still waiting…). It's a stretch to afford a gym membership - we found a basic $10/month one and I feel lucky - but can't afford child care at the gym. Working out at home is harder with him underfoot and we don't have the equipment. And eating well on a budget is still challenging.

I have to keep reminding myself that taking care of my health is important so that I can take care of my little guy. Exercising is actually good for my mental well-being and lifts my mood, making it easier to deal with all the little frustrations of the day. Eating properly is good for everyone in my family. I've had to learn, as a mom in general and as the mom of a special needs child, that putting myself first for a little bit each day helps me to do better in putting them first the rest of the time.

I hope you find something in what I said that helps, even if it's just knowing that you aren't alone

I am a stay at home mom to a 2 year old with 18 p deletion syndrome (or 18p-).

That is around the time they "labeled" my daughter, when she was around 2 years old. She has a small deletion on one of the pair at 21. I believe there is a name for it now, and the description fits her to a T. but unless a geneticist says it's that, for now she is just labeled. I wanted to get a name, a diagnosis, not just a label cause I thought it was easier to explain to people. Now I just don't care. She didn't walk until she was 6 years old, she doesn't talk, in diapers, needs to be fed, now she has started to have siezures. It's all good though. I ignore the people who stared when she was in a wheel chair and I ignore them now when we're in a public place and she's "talking".

We need to take care of ourselves, find ways to fit it in, cause we're taking care of the most special people in the world!

We've had the genetic testing. It's confirmed, we even know WHERE on the chromosome it is. But I think you're right, it's only a help in knowing what's going on. It doesn't change him at all, and doesn't give us a ton of answers in what to expect, just a range of variations.

Thank you for taking a second to respond to me, too. It's helpful to know, especially as I am at the beginning of all of this (we got the diagnosis the end of May), that there are other parents who've gotten through and are doing wonderfully.

there is a 7 minute workout and it is a free app if you have a smart phone - no equipment necessary - Hope this helps