SPECIAL NEEDS PARENTS

Setof2Keys

I am not new to this, but I am dumbfounded how quickly my health went to down hill after my children needs went up. I have 2 sons with Autism and {drop some 4 letter words here} is it difficult. My children did not ask to be here and we have been fighting like crazy to push them to their full potential. When I look back at my life 9 years ago, I would have laughed at anyone that said I could ever be this selfless...yet here I am!!!

I am also surprised how difficult it is with diet restrictions, sensory needs, and pure stubborness how diffucult it is to promote healthy lifestyles for my children. I am not giving up...they will have to adopt at least some of my habits eventually right?

How are other parents meeting these needs? This is not just for my own info, but I hope to help others that may be wondering.

Setof2Keys

Don't just look and not comment...I see you 6 views and no comments...LOL

Katbaran

I looked and didn't comment b/c I didn't have anything to say or advice. Just hang in there and we're here for you!

LyndseyMcKnight7

Welcome! I have a 2 1/2 year old with Williams Syndrome, which involves learning disabilities, cardiovascular problems, developmental delays, etc. She had open-heart surgery at 12 months and was in the hospital for a month, so was I. I gained so much weight because i was so focused on her and not on myself. It is a struggle everyday to think about doing something for myself, and I constantly feel guilty, but then I think, she needs me and if I'm not healthy, then I'm not doing her any favors.

It's a good thing you are doing for yourself and your family! Good luck to you, mama!!!
Hugs

Setof2Keys

@ Kat...LOL, I just didn't want the post to get ignored or passed up.

@ Lindsay thanks for the motivation, Im going to message you.

monkeybuttsmommy

My son was born with Spina Bifida (Lypomylominicigicle to be exact) took an 8 hour spinal surgery to attempt to correct. It has a high likelyhood to re-occurance so he will be having MRI's every six months until he is 5. He just turned 1. We have been dealing with this issue since his birth and have to continually worry it will re-occur and do damage to his spine possibly causing perminant damage and disability. He is my first and only child. I had him at 36 years old. I waited because I was selfish with my time and my ability to come and go as I please. I knew with children that was not an option. But having said that, when I had him, that was when I truly grew up and saw beyond my self. I know what its like to make it all about your child or children. This site ios great for support! Good luck to you.

Dtho5159

Hi there, I sent you a request!! My son is 6 and has autism.. he was diagnosed at 22 months old. Its been a rough 4years!

sclosson

My children have no specific special needs (unless you count being a teenager in general); however, my daughter is the world's pickiest eater ever. Trying to get her to eat anything let alone something healthy is a constant challenge. It does affect her health. she is anemic and tired all the time. Trying to meet your children's needs while surviving yourself is a challenge we all face. It is easier to do it with support.

Ashley_Panda

I have a couple of friends with autistic children. My son was born with bilateral sensorineural hearing loss. Basically he wouldn't hear a jet plane fly over him.

Amberwaves01

My son is 3 and has severe developmental delays. It's tough making yourself a priority when you have kids--especially ones with special needs. But I feel better when I take care of myself and that makes me a better mommy. As for food, it takes around 4-5 times of serving a new food for my son to try it. I was so happy last week when he finally tried and liked apples. Don't give up if the child rejects a new food. Just keep trying. Hang in there and don't give up on your healthy lifestyle or on your kids eating healthier too. There are lots of parents in your shoes here to offer their support and advice!

sarahbear1981

I am not a parent with special needs children but I spent the last eight years working with disabled college students with a whole spectrum of disabilities and I have met many of their loving and supportive families. I had one student who was autistic, who when I started working with him wouldn't even talk to me. He would just sit in his chair and rock back and forth. It took some time to get through to him. What worked is I started telling him all about my hobbies and found out he really like television and that his favorite show was Where in the World Is Carmen San Diego. At that point I has something to talk with him about and eventually he was writing essays and talking with me up a storm. Last year at the beginning of the semester he walked in the office and said hi Sarah how was your summer? I was shocked. He now regularly has conversations with people and while still socially awkward has made drastic improvements. He is now almost done with his associates degree in pre engineering.

My point is two-fold. First that these children do have hope and a future, It is very important to make sure they have good help in school and otherwise. Get to know their school helpers and counselors. Second, when working with people who are autistic it is important to relate to them in ways they understand. Most autistic children have a fixation of some sort or a particular pattern. What do your kids really love? Can you come up with a creative way to integrate healthy eating into this fixation?

I want to encourage you to keep trying your best and staying healthy for your kids. I know it is difficult and I thank you for caring about such special people.

b00b0084

I jsut wanted to say, those of you that have special needs kids are amazing women and so blessed in your life! My aunt is severely fetal alcohol sydrome and in her 40s is only mentally 5-8 and she is the most amazing person I have every met. I am so proud to have her as my aunt!

legacysh

Gosh I wish I had a reccomendation. I have a nephew with Autism, and I know his mom has worked hard to learn as much as she can about nutrition, especially additives in foods. I am sure this must be very difficult not to lose yourself in what you have to do for them. So I applaud you for getting on here and I hope that someone out there can provide you with some sage advice.

Jade_Butterfly

Hi sweetie,

I feel you. My 10 year old daughter has autism and ADHD, she has OCD behaviors due to the autism, so I understand things being difficult. I used to try to be supermom, now I am souly devoting my time to her, my business, and school. When I was working the teachers always had my cell number. But some jobs are understanding of this, some are not in my experience. There were times, I just had to tell work, my daughter needs me right now I am going to have to leave early today, or was late to work. So it is just part of it. But I am her biggest advocate in everything. I have worked with adults with disabilities for over 15 years, so it gave me the knowledge to help her.

If there is any help or support I can give you let me know.

Feel free to friend me.

FairyMiss

hiya just wanted to say i know where you are coming from, I am the single parent of a 11 year old autistic boy (with adhd and ocd too yay!!!). I do not have him on any special diet but his pickyness and sensory issues , mostly the sesory issues makes it difficult. He has , though not as bad as when younger, texture issues with food.
oh and by the way i just finally got him properly diagnosed last year , yep took 10 years, fortunately even 'stumbling blind' i managed to go a right path with him.

FairyMiss

hiya just wanted to say i know where you are coming from, I am the single parent of a 11 year old autistic boy (with adhd and ocd too yay!!!). I do not have him on any special diet but his pickyness and sensory issues , mostly the sesory issues makes it difficult. He has , though not as bad as when younger, texture issues with food.
oh and by the way i just finally got him properly diagnosed last year , yep took 10 years, fortunately even 'stumbling blind' i managed to go a right path with him.

any of you with similar circumstances feel free to friend

Christie23

Genetically, the women in my family have always yo-yoed, but never SERIOIUSLY. I gained weight in college (due to an overly comfortable relationship and, ahem, some recreational eating, if you will), but I decided to lose it one day and I did just that. I guess this is what gave me an overly confident attitude on the ability to lose weight.

It didn't happen all at once. I wrote a blog about my daughter and how she came into this world on Autism Awareness Day, actually. My grief began with pregnancy... I carried her to term knowing that she had a mere 50/50 chance of survival. My ex-husband and I couldn't make it through the stress of that together. I firmly believe that as a relationship, trauma will either bring you together or tear you apart. I suppose it was all for the best, because if we couldn't handle that, we certainly weren't going to be able to get through what was coming. But, nonetheless, I was on my own. He immediately moved in with another girl. And she was actually the one who forced me to see my daughter's delays... it was a pretty tense situation. When Ava was finally diagnosed with autism, at three, I came apart. I isolated mysef. I drank too much. I wrecked myself. I didn't KNOW I was doing these things... I thought I was taking it in stride and doing the best I could. And I was, for Ava. But after Ava was tucked snug in her bed, I derailed. Every single night. I was gaining weight, pushing people away, feeling like I could "get it under control" like I did in college. Not really sure what I was waiting on. In retrospect, I couldn't help it... I was in an emotional spiral that I couldn't get myself out of. Part of it was the stress of this new life, the other part the guilt of feeling this stress and the BIGGEST part was just plain overwhelmed. Slowly, but surely, my body started shutting itself down. And I had no choice but to see it for what it was.

So... here I am. You're definitely not alone. And by taking care of ourselves, we are better able to take care of them. We can show them that they can do anything, no matter what anyone tells them.

If you ever need a friend, I'm right here.

Christie23

And, as far as Ava's info... she's gluten free and casein free. I have her on Brainchild Nutritionals Spectrum Support liquid vitamins and minerals three times per day (in juice). She also takes Cod Liver Oil, LiquiZinc, Colostrom, Probiotics, Enzymes and Q-10 twice daily and a spray of Methyl B-12 under the tongue every morning. Occasionally, I like to give her some Pau D'Arco tea if she seems yeasty. I give her nghtly baths in a mixture of epsom salts and baking soda. We have done a full chemical chelation and a full yeast die-off regimin in the past but now they are only employed when needed.

It may sound like a lot, but man... she is doing outstanding!!! Took a lot of trial and error to find the right combination of things for her. We are actually experimenting with taking her off the gfcf diet right now. We'll see how it goes...

FairyMiss

you know that is kinda one advantage of the late diagnosis, I had been living, working with my child's problems, delays, needs for so long. all the therepies , fighting for all the therapies, fighting for every milestone that when we finally got the official diagnosis it was like uhuh yep.

FairyMiss

you know that is kinda one advantage of the late diagnosis, I had been living, working with my child's problems, delays, needs for so long. all the therepies , fighting for all the therapies, fighting for every milestone that when we finally got the official diagnosis it was like uhuh yep.

scrappymel

(((((mamas))))

i work for soonerstart early intervention for the state of oklahoma. hope you all are plugged into early intervention if your kiddos are under three years old. each state has therapy and support available at low or NO COST to you. we see kiddos everyday with a wide range of delays/disabilities, and i always find myself respecting their mommies so much. be kind to yourselves and know without you being healthy, your children won't have your best. take a little time out for yourselves when you can.