SPECIAL NEEDS PARENTS

Options
2»

Replies

  • Christie23
    Christie23 Posts: 357 Member
    Options
    (((((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:
  • PecanTanDiva
    PecanTanDiva Posts: 162
    Options
    I talk about this soooo much :cry: 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 :smile:
    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 :love: :heart:
  • FairyMiss
    FairyMiss Posts: 1,812 Member
    Options
    (((((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 not
  • SuzMac1981
    SuzMac1981 Posts: 708 Member
    Options
    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.
  • smtraxx
    smtraxx Posts: 60 Member
    Options
    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.
  • LesliePierceRN
    LesliePierceRN Posts: 860 Member
    Options
    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.
  • Tracenspace
    Tracenspace Posts: 53 Member
    Options
    My 15 year old has autism. He's my walking buddy.
  • phoebe45
    phoebe45 Posts: 5
    Options
    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.
    Phoebe45
  • FairyMiss
    FairyMiss Posts: 1,812 Member
    Options
    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.
  • mescla
    mescla Posts: 56
    Options
    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,

    mes
  • melissarhodes
    melissarhodes Posts: 8
    Options
    I have 3 children, but only my 8yr old son is autistic. He was diagnosed at 18 months, but it was put on his records at 2..He is a handful and at times I'm ready to walk away.. My daughters, one is older, one is younger than him, are neglected and alot of responsibility is left to the older to help with the younger.. My day in and day out are on him and lately it has been alot more rougher to handle him.. Right now we are looking at putting him on Medication to calm him down.. He has so much anger, so much in my home has been broken. When his father is around it seems to be worse. He has been in schools since we left Hawaii, he was 2. He has did Special Needs school for 3 yrs and Kindergarten 2yr and now he is finally finishing up 1st. He still doesn't know how to read, and his grades are D's and F's. This yr, the school system is telling me they don't want to help him anymore.. Well his Dr is fighting that with me. I'm trying to lose my weight because first of all its not healthy, but there is not a day my son does not tell me how fat I'm am.. So I feel your pain with raising a child with Special needs.. It's not easy, but we all manage and love them..
  • pinkgigi
    pinkgigi Posts: 693 Member
    Options
    Sheesh you people are inspirational!

    My son is not counted as 'special needs', but has been a very difficult child to raise. He had to repeat kinder because he was just staring into space and not listening. Straight up with school I was asked to have him evaluated a number of times. Each time, yes he has learning/concentration problems, yes we are going to do .... but they never did. For me, it was a battle of wills to work with him at home, meanwhile my marriage fell apart.

    Then a miracle, I discovered he had a musical gift, which led him to getting a 100% scholarship for a wonderful school, but they didn't know how to help him either. Each parent/teacher interview was hell, and if he didn't do the work at school it came home to me, what good does that do? If they can't help him, what can I do?

    At the age of 15 he had his first epileptic seizure, another setback, meanwhile he continues to sing, and low and behold he is really good and at the age of 18, with doing the bare minimum of work in the final year of school, he manages to get into Arts College. During that year, my second husband passed away with cancer.

    He is flourishing there, but last year at the age of 19, he was diagnosed with second stage cancer. 2 major surgeries and 9 weeks of chemo followed. I lost 22 kgs after my husband died but 12 came back on in the past year, in September I was diagnosed with chronic depression. I am trying to reclaim myself and reclaim my health. So although I do not have the daily struggle you all have, I can sympathise with dealing with my son who is both a gift and a burden, last month he celebrated his 21st birthday.

    My daughter has decided to go away to university so that she can also reclaim her life from under his shadow, so I now have some more time and some more energy resources to dedicate to me. I wish for all of you to reclaim a sense of yourself outside of the caring role, and nurture yourself with healthy food and exercise, love and acceptance.

    GG
  • sunleigh
    sunleigh Posts: 84 Member
    Options
    my daughter is 7 years old. She was born with a heart condition and has had many open heart surgeries to try and fix the issues. after her second open heart at 2 months she went into cardiac arrest and now has cerebral palsy b/c of it. I agree I let myself go, i was always last on the list of the many things i needed to do during the day. I have learned over time that I needed to be heathy and take time for me to be a better mom. Good luck with your venture:smile:
  • pjfmaui73
    pjfmaui73 Posts: 408
    Options
    I'm here reading everyone's stories with a heavy heart. Because I am feeling your pain and I understand it so well, but some of you have been through so much. I used to be angry...why did my mom have to die when I was 16? Why did my brother have to have schizophrenia and why couldn't he be saved (he committed suicide). Why does my baby have to have autism? I had a realization that life is hard and yes, you may be going through (or have gone through) some terrrible things but there is always someone worse off. I realized that my son choose me ( I have 2 other children also). He is such a joy, but it's also very frustrating and hard at times as you all know. My son turned 3 today and he's pretty nonverbal. He was talking more as a baby. I have him on a gluten and caisen free diet, b/c when he started exhibiting autism ~16-17 months his bowel habits changed. Now that he takes probiotics and digestive enzymes along with a diet free of preservatives (& poss. gluten and caisen) his bowels have cleared up. I try new foods, but he has his favorites...ie spagetti so I mix organic spagetti sauce on things like veggies and he usually eats them. I applaud him when he tries a new food (usually) he will once and if he likes it he'll keep eating it. If he doesn't like it (or he thinks he doesn't) I'll wait a few days or week and try it again. I keep try periodically and sometimes that works and sometimes it doesn't.

    God Bless everyone of you and all your children (special needs & not)

    :flowerforyou:

    Pam
  • Setof2Keys
    Setof2Keys Posts: 681 Member
    Options
    Thank you to everyone...not only is sharing weight stories so personal, but you have shared stories about your children, special children and quite possible the most devistating information a parent can receive. Thank you...
  • autiemommy
    autiemommy Posts: 238
    Options
    Hey there! Im Jenn and i as well have 2 children with autism. My 4 y/o has a lower functioning autism as well as other delays and a rare chromosone and gene deformity that there is maybe 1 other diagnosed case. He is still non verbal he was also diagnosed at 18 months. He was a preemie so i know your battle. And about 7 months ago they diagnosed my 3 y/o (tommorrow) she will be three with autism as well.

    It is hard and rewarding at the same time. I didnt have time to read all the comments. But please know that i am here for you if you need a buddy for support or to vent too.

    And my other son also has health problems.

Categories