SPECIAL NEEDS PARENTS
Setof2Keys
Posts: 681 Member
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.
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.
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Don't just look and not comment...I see you 6 views and no comments...LOL0
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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!0
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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!!!
Hugs0 -
@ 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.0 -
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.0
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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!0
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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.0
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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.0
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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!0
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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.0 -
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!0
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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.0
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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.0 -
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.0 -
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 friend0 -
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.
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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...0 -
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.0
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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.0
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(((((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.0 -
(((((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.
You're awesome!! :flowerforyou:0 -
I talk about this soooo much
This is the hardest job I have. My twins were diagnosed when they were 2 years old, they are now 11. My daughter has went from severe autism to being "somewhere on the spectrum." She is on her grade level and doing everything we all expected, now her twin brother, no so much. He is a huge ball of fire 
I used to feel bad because I saw my daughter change and he stayed the same, but I will take him just the way he is ( I Love him). They are my life, yes it has been a struggle and I have sacrificed a lot, but I dont regret a thing. They have taught me to have more patience with others and most of all what true love really is. I know its rough, but with the support of my husband, I get through my son's tantrums, picky eating, and his health problems. He has OCD + a seizure disorder which makes it harder for our family to do the things we love to do, but I can deal with it because when we decided to have children, WE knew we were always in it for the long run...I so love them
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(((((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.
oh yeah my son had great doctors had him in early intervention by 18 months, when he didnt talk at 15months, he was defiantly not the wait and see type and neither am i,
Early Intervetion is why i belive my son has done so well, diagnosis or not0 -
First off, I want to applaud each and every one of you! You are amazing parents and big ((((((hugs)))))) to you all.
Then I'd like to talk about my daughter, Alyssa. She is 5 years old and is the product of a single parent who left an abusive situation when she was 2. I don't know what took me so long to get the heck out of there but I am so glad I did. She was in Early Intervention for speech and language delays from 18 months old to 3 years old and then I suddenly had to fight the system. I am STILL fighting. I had her eval'ed in two different public schools (at the age of 3 and again at 4) who told me she was on the cusp of normal and below normal in her delays. It was so frustrating... I would get the eval, go back to the pediatrician who told me she really needed services, go for another eval, get denied, back to the ped, and so on. Finally I paid for private speech therapy out of my pocket. FINALLY the private speech therapist put through paperwork to get her additional state-funded insurance to cover the co-payments. Then I got a job in Boston and had to move.... it's been a fight AGAIN to try to get help. Our new pediatrician is no help. Our ENT is amazing and tried to do everything in her power to help us (my daughter has had 4 surgeries with her since 4 months old so she really knows us well). We had an appointment for this coming August for a speech and language eval from the Children's Hospital Dept. of Communicative Disorders. We were given that appointment in February and I was shocked and saddened that we would have to wait another 8 months before getting another answer.... but MIRACLES HAPPEN and I received a call today telling me she could get in tomorrow due to a cancellation. HALLELUJAH... maybe I can get some more answers and find out how truly behind she is. Without going to therapy consistently, I have seen her backslide even though I try to work with her as much as I can.
The ENT wants to test her for an auditory processing disorder as well but we have to wait until my daughter is 7... she can't test before then because she could be mistakenly diagnosed with ADD or ADHD (which is absolutely a possibilty) - they will be able to know for sure when she is a little older and can go through all of that involved testing to determine what is wrong, exactly.
Long story short (yes, there is a longer version! lol)... while my daughter isn't necessarily "special needs," I have been through many, many hardships with her (and surgeries, hospitalizations, evaluations, lol) that I consider her a "high needs" child.0 -
Hi ... I have 1 niece and 1 nephew who both have Asperger's and ADHD. So I can relate to you in a big way.
On a personal level my son was born with I.A. which is that he was born without a hole in his bottom. So he had major surgery at 2 days old to make one and has had many more ops since. We have been in and out of hospital for the past almost 2 years (his 2nd birthday is July). He also has Celiacs Disease which is an auto-immune disease and is there for on a gluten free diet. Due to all his time spent recovering his speach is delayed and he may never have control of his bowels. Our next step is potty training but we can't start that until he is three and we have to go to the hospiatl for them to help us train him.
I have given up work to look after my son fulltime. My husband is our rock. He works damn hard and we live on a very small and super tight budget,
I totally devoted the last two years into looking after my boy and making sure he is pain free. I have become a comfort eater. Something that I never ever were. But i have now decided it's time to make us all healthy. So our whole house is eating better and moving more.
We are slowly getting there and I hope and pray that by the time my son goes to school he will be just like all the other kids, but if he's not, so be it, and I'll love him even more. But hopefully he'll have a healthy mummy and daddy who will be around for a long time.0 -
I also have two special needs children.. and believe me, my autistic son doesn't have anything on my daughter in terms of difficulty. She has a disease that is 75% fatal right out of the gate, and the ones who live tend to have profound disability. She is g-tube fed and every day is a struggle to keep her alive. And yet these two knuckleheads are the joy of my life. I'd walk to the ends of the earth or more for them, and have done greater than move mountains to see they are cared for and that they reach their fullest potential. It's not easy. It's never going to be easy. It's relentless. But they're worth it. My daughter will be 15 next month and my son just turned 12. Together we have defied all of the odds and prognoses. Get yourself a good support system, find other parents in your boat or around you.. you can start with me, if you like Then work on yourself. Schedule "Mommy" time every day. You'll be a more effective, energetic, efficient mom if you also allow yourself time. That's what your children need, the best Supermom they can have. It seems counterintuitive, but if you "sacrifice" yourself for your children, you are actually making it worse. No one wants a tired, cranky, unhappy mommy, and your children sure can't afford one. Children don't need martyrs, they need mothers, strong mothers that will protect them all of their days. Don't feel guilty about setting aside time to work on you. It's the best gift you can give your kids. I know, I've walked this path for a decade and a half now. I run to burn off stress, I run to be as healthy as I can to take care of them as long as I can, and I make sure I set aside time every single day. It's just that important. And my children are proof: they are happy, well adjusted children despite the life they live. 0
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My 15 year old has autism. He's my walking buddy.0
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i can relate to this becasue My boyfriend has a child with austim too.I think spelled it wrong.he couldn't do alot of things.He has three kids,He can understand it very well.You gotta try your hardest to exercise when your son is in school.just giving you a peace of advice.
Phoebe450 -
First off, I want to applaud each and every one of you! You are amazing parents and big ((((((hugs)))))) to you all.
Then I'd like to talk about my daughter, Alyssa. She is 5 years old and is the product of a single parent who left an abusive situation when she was 2. I don't know what took me so long to get the heck out of there but I am so glad I did. She was in Early Intervention for speech and language delays from 18 months old to 3 years old and then I suddenly had to fight the system. I am STILL fighting. I had her eval'ed in two different public schools (at the age of 3 and again at 4) who told me she was on the cusp of normal and below normal in her delays. It was so frustrating... I would get the eval, go back to the pediatrician who told me she really needed services, go for another eval, get denied, back to the ped, and so on. Finally I paid for private speech therapy out of my pocket. FINALLY the private speech therapist put through paperwork to get her additional state-funded insurance to cover the co-payments. Then I got a job in Boston and had to move.... it's been a fight AGAIN to try to get help. Our new pediatrician is no help. Our ENT is amazing and tried to do everything in her power to help us (my daughter has had 4 surgeries with her since 4 months old so she really knows us well). We had an appointment for this coming August for a speech and language eval from the Children's Hospital Dept. of Communicative Disorders. We were given that appointment in February and I was shocked and saddened that we would have to wait another 8 months before getting another answer.... but MIRACLES HAPPEN and I received a call today telling me she could get in tomorrow due to a cancellation. HALLELUJAH... maybe I can get some more answers and find out how truly behind she is. Without going to therapy consistently, I have seen her backslide even though I try to work with her as much as I can.
The ENT wants to test her for an auditory processing disorder as well but we have to wait until my daughter is 7... she can't test before then because she could be mistakenly diagnosed with ADD or ADHD (which is absolutely a possibilty) - they will be able to know for sure when she is a little older and can go through all of that involved testing to determine what is wrong, exactly.
Long story short (yes, there is a longer version! lol)... while my daughter isn't necessarily "special needs," I have been through many, many hardships with her (and surgeries, hospitalizations, evaluations, lol) that I consider her a "high needs" child.
oh you dont have to tell me about what a fight getting services can be, at four i was still having trouble getting my son speech through school. totaly non verbal at 4 and he didnt qualify. well i got to the point where i was calling the ese department of the school board every two weeks asking for evaluations, a few months of that suddenly they had a change in criteria and he qualified.0 -
Alrighty, where do i start.. Well first off, please add me.. I know your pain and your joy!..My boys have autism too.. One is 10 and the other is 8. They are like two little toddlers who get into everything. Food and overall digestive issues are common struggles with children with austism.. I find the same with the parents.. I asked my husband tonight what he was making for dinner,,.. Amazingly, they like tofu (curried) and that is what he is making.. We make all kinds of things and sometimes they don't eat it.. We try not to get into food battles and mostly try to have a variety of things for them to choose from that are healthy.. We do have lots of snacks around and my 8 yr old who mostly want that and only that.. He is strong willed at times and acts out at meals at times because he wants something else.. Well, i have learned we don't battle, im too tired for that, but offer some alternative... OK, onto me,, the energies have been so concentrated on them and my girls because I kinda let myself go after curves closed down here. But I recently, stqrted to go to work out three times a week close by, but you have to take care of yourself in order to be here for them.. That is the bottom line.. hang in there and we can be on this journey together.. aloha from Hawaii,
mes0
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