Parents with Special Needs kiddos

nala1965

Blessings to all the mothers and teachers!!!!!!!!!!!! I helped to raise a child with Cerebel palsey and he was my angel. My heart and soul. I think of him every day now that he is with the angels.
I suffer ever day due to shoulder and back problems........... Ladies Please Please Please lift with your legs not your backs and shoulders. I understand when you are grabbing a child haveing a tantrum you dont think but if you do it when you can think about it you will do it naturaly when you cant t hink about it.

I have put on almost 40 lbs since my guy left to be with the angels and I am trying to get it off. I just want to stop by and say you guys are the best. Give those children hugs and kisses and love them like there is no tomorrow.

greendragon3

Really good to find you all on mfp.
I am 47 and a single mum to 3 boys. Only my youngest left at home now and he has autism, adhd, profoundly deaf (has bi-lateral cochlear implants, rare brain malformation and type 1 diabetic.
I have been wheelchair/bed bound for the last 5yrs.
Trying hard to get to my goal weight and have 10lb left to lose but boy is it hard to lose it now.
I am looking for shared support and motivation.
You are all welcome to add me as a friend.
We WILL get there in the end.

lucyhoneychurch

My oldest son turned 5 last week and will be entering kindergarten. His speech is WAY behind developmentally, both expressive and receptive. I'm so happy to say he's no longer non-verbal, but it's a double-edged sword because the speech he does have is mostly scripting and echolalia. Hence, speech therapy (and OT) is on top of the priority list. It's taking a lot of hard work to move forward, but it is what it is.

seriousaboutlife

I have a 9 year old son with secondary autism. His is due to a 12 hour grand mal seizure (he went almost completely brain dead) that he had at 21 months (and at that time, he was way above average intelligence). 3 months later, he was diagnosed with leukemia, relapsed 19 months into treatment, and has endured 4 years of chemo and 17 radiation treatments to the brain and spine. He finished chemo in 2007, and had brain surgery to remove seizures in 2009. We are currently weaning him off of his last seizure med (of 3). He is in a school that has a special needs (life skills) department. He gets level 3 funding, which provides him with a one on one Educational assistant. The school has been a huge blessing to us.

The changes that we have seen since reducing his meds are INCREDIBLE!!! We went from him and his sister (who was 2 weeks old at cancer diagnosis) not able to spend any unsupervised time together... to the best of buddies. Seizure meds made him a little monster. I too felt like I was a horrible mom.

Wait a minute... this was about weight loss. lol After Josh's diagnosis, I lost 80 lbs and worked very hard to do so. Then BAM... the relapse. Hit me like a ton of bricks. I started emotional eating and gained 50 of that back. Now things are going good... and I have no excuses. SO... here I am.

If you want more of our history, we have a caringbridge site. caringbridge.org/canada/joshua

friend me if you want!!!

lucyhoneychurch

Wow! What an amazing story! And what hardships! Oh yeah, weight loss.... well hell, I'd love to join you and learn how to share support. Funny how working out and eating right are helping us look and feel stronger, and yet through our kids we have gone through some of the toughest situations that others may never, ever experience but have made us stronger, no matter what our weight was/is.

seriousaboutlife

yep... and there's a huge difference between being overweight and letting it define who you are or what you do. Thankfully, it does NOT control my life. That in itself is a HUGE win. Glad to join you on this journey!

MistyDC29

I consider myself blessed to have found this thread and to come alongside you all on this journey.

Triquetra

Bump for later. I have a SN son and don't have time now to respond....all ya moms know what i mean!

scs143

I have a child with special needs as well. He has an extremely rare condition called Escobar Syndrome, which is the genetic version of Arthrogryposis- which means joint contractures. All of his joints are contracted and along with the genetic side of this comes webbing (i.e. extra facia) and severe scoliosis. He (we) has had 6 surgeries in the last year (he is 16 months) and we have another big one coming up in October. He is a twin and his twin is unaffected. My 6 year old is unaffected as well.

Owen is heavy now at 16 months, with all his braces and stuff. I cannot even imagine how much harder all this lifting is going to be over time. We are adjusting the idea that he will most likely be in a wheelchair and we hope for some ability to walk- even if just in the house. His knees and feet are some of his worst joints.

It's really really really hard to make time for yourself, or to not feel guilty, to put your needs before your family even for just one half hour a day. I also think it's the healthiest thing we can do. I know that with all these life changes over the last year, I have never been more stressed, nor has life been put in better perspective for me. I need to get healthy. I need to be able to handle the physical aspect of having a physically disabled child.

It's great to meet you all!

lucyhoneychurch

scsedey143, I totally hear ya and feel ya. I find it interesting that while I initially wanted to lose weight just to stop being so big and bloated from years of self-neglect, the dual purpose is to get stronger so that I can handle my growing son (I mentioned this earlier). I never, ever thought that was something on my agenda. I also never thought I'd have to learn how to be a speech language pathologist to help my son acquire more [any] language, or an amateur gastroenterologist to figure out why my son keeps becoming constipated (NO, people, it's not just lack of fiber) and what I can help him use besides Miralax.

I've been eating pretty clean lately, too, except for the McDonald's Angus Burger w/o cheese + fries I had today after I took the kids to a 10:00am movie for the first time. Nikko (my ASD kid) sat next to me, squirmed a lot, kicked the [empty] chair in front of him, but did NOT freak out in the darkened theater or babble too loud. I'd call that a success! I wanted to reward all the kids for good behavior, but I guess I ultimately suffered by getting myself something. I shouldn't have done that. :P Now it's off to drink more water and find out how to cram in some exercise after Nikko's ABA session to make up for the bloating that's bound to happen from all those fries. :sick:

minussam

Love the welcome to holland story. Thanks,
We're not sure if our son is SN or not. He's certainly talking very little for a 2 year old. In case he is, I feel he needs a healthy mom who can be there for him as best and as long as possible. So here I am...
You ladys are amazing and aspiring. Your children are lucky to have you!

Triquetra

Hi Ladies, I'm back now (at work so have time to respond now ).

My son is 12 yr and he has a rare chromosome deletion (15q11.2) that causes developmental delays, cardiac abnormalities, speech delays, autism and ADHD....yep quite a handful! I also have a 8yr old average girl.

My reason for being on here is twofold, my ex-husband walked out on out 2.5 yrs ago for an internet woman leaving me with full custody of the children. I have my own health concerns (PCOS, hypothyroid, B12 and iron anemic, pre-diabetic) and now I have to get it together because I am the only one there for my kids.

It is tough, you do what you need to for your children and yourself, and if you come to my house and it is messy I take that as a good sign, that means that I am caring for my children first!