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janetksc
janetksc Posts: 80 Member
My name is Janet and I live in South Carolina, my special needs daughter is 27. her name is Jennifer and she lives with us at home. She has cerebral palsy and is fully dependant on myself and my husband of 28 years for her care. Her siblings also help when asked. She is the focus of our whole family :)
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Replies

  • MelanieWo
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    Nice to meet you! I'm Melanie. I am the mother of a Special Needs daughter, 18 yrs old. I live in Scottsdale, AZ My husband is currently having to live in Beaufort, SC, because that is the only place he could get a job. I guess services for special needs kids are pretty bad in SC. They are pretty good in Arizona, but she still takes up most of my time, except for when she is at school. Here they can continue to go to school until they turn 23. My daughter is partial trisomy 13. She is deaf/blind, non verbal, mild CP, seizure disorder, and developmentally about 18 months old. Has many, many other problems, but these are some of the major ones.

    Most of the time, she is so sick that it takes all of my energy to just care for her. At least that's what I tell myself. I think I just feel overwhelmed by all there is to do and there doesn't ever seem to be a break in it. Right now, she is doing better physically, so I am trying to get my act together and get healthier for her and for myself. The doctor says that I'm not going to be around to care for her if I don't change my eating/exercise habits. Then he said,"Maybe that's the way you want it...." No, that's not the way I want it. It's just one more thing that I have to pile onto my plate!
  • MelanieWo
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    Welcome! I'm glad to see another member of the special needs community. I'm not sure that others understand the challenges that we face daily. We just need to keep building each other up and reminding ourselves and each other that we are important too!
  • FatassFairy
    FatassFairy Posts: 166 Member
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    Hello i am Missy the mommy of an Autistic, ocd, adhd incredible little (well not so little) 12 year old boy.
  • janetksc
    janetksc Posts: 80 Member
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    We were in California for Jennifer until she was around 10, then moved to South Carolina. I had to deal with South Carolina special services with her and at first it was a fight..but then when is anything easy with a special needs child. I was able to get her to go to the same high school as her siblings...made them change their thinking. with a lot of emails and threats. And she was in middle school and high school with her brother and sisters. She "graduated" out at 22, and now she has been home with us full time since. I am acutally very lucky, she is very healthy.
  • luvmybee
    luvmybee Posts: 58 Member
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    Hello,
    My daughter is 16 months old and is a micro preemie. She is g-tube fed, developmentally delayed, and might have a mild ataxic CP. They won't diagnose her yet. She is my joy and she is beautiful. We have so many therapy and doc appointments that it is hard to have enough energy for myself. She struggles with severe reflux which is why we got the tube. Anyway, for the first time since she was born I am ready to work on myself.
  • lucyhoneychurch
    lucyhoneychurch Posts: 576 Member
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    Hi everyone, my name is Melissa and I'd like to join your group! :flowerforyou:

    I'm 38 years old and a SAHM to 3 kiddos, ages 5, 4 and 3. My oldest son, Nikko, has classic autism and is in Kindergarten. He's in the special ed program in the mornings and is in regular K in the afternoons with an aide.

    I totally know what it's like to care for your kiddos and never put yourself first. In fact, when I first joined MFP, I specifically went searching for moms with special needs kids because I wanted to share support. Other moms really have no idea how much more difficult it is to have a special needs child, but the moms who do just put on their armor every day and deal with it. :smile:

    Regarding the whole weight loss journey, I'm pasting the link to my success story: http://www.myfitnesspal.com/topics/show/374412-finally-after-6-months-37-lbs-i-m-ready-to-share

    I have lost 37 pounds to reach my goal weight and I'm currently in maintenance mode, trying to figure out how to stay here. I hope this group can grow and help other moms to have hope, despite all the curve balls that life throws at us. :heart:
  • MommaCatriona
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    Hello :n) My name is Catriona and I am 22 years old. I am a single homeschooling mom to Claire (6) and Connor (2). Connor is my special-needs sweetie - he has Eosinophilic Esophagitis (http://www.youtube.com/watch?v=6ceT9q5rdSw), Gastroparesis, Sensory Processing Disorder, Dysphagia, and a Global Developmental Delay. He is only allowed to drink a special formula made for children with his condition, it's been a long road, and his disorder has forever changed my thoughts and feelings about food ♥ Since his birth in 2009 I have gained over 100 lbs, I stopped caring about myself and became completely enthralled in advocating for his health. I am today at the heaviest I have ever been, my health is suffering, and I am ready to take control. I am tried of being tired... and am looking forward to sharing my journey here!
  • lagcrg
    lagcrg Posts: 38 Member
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    My name is Lori and I have 3 boys. My oldest was diagnosed with adolescent bipolar and ADHD at about 8y/o, and now at 16 we are finding out that he may have Asperger's. Schooling has been a challenge since pre-school but we have always done our best to be a advocate for him, helping with school work, talking with schools and teachers, finally in 5th gd. we got an IEP set up for him which still took much working/talking with teachers to help him succeed. He still struggles with grades and social environments. Since he can not "read" social interaction well or at all, he has always seemed to have anger/frustration issues that can trigger great out burst. He also has mild sensory issues, as well as some mild OCD. We have been through a lot with this boy and it hasn't always been easy. Especially as a mom/woman, the emotions can run very high at times. Until this very new finding of Aspergers, I was feeling as though I had nothing left to give, I felt burned out. But now I have more hope that as we continue to work through counseling and meds and lead by example and even changes in diet, he could very well live a "normal" healthy life.
    Our youngest, 10y/o, also has been diagnosed with ADHD and as I look at the symptoms of Aspergers I can see some in him. The difference between the two boys is that this one doesn't struggle in school work, and can usually talk to us about his feelings even if he almost always cries while doing it. But its nice to not have to worry about his school work as he is getting A's n B's.
    Our middle boy, 11y/o, seems "normal" and hasn't had any diagnosis' YEAH!! He really helps out a lot but we can see that dealing with the other two sometimes drains him as well. So we try to take some extra time with him just to let him know he too is important.
    In closing, I love all my boys with a love that is unexplainable. And I stand in my faith that they all will surprise me one day by over coming these problems and live out a healthy life as well as having close relationships with each other and not be seperated by these issues. Thanks for listening!
  • MrsR0SE
    MrsR0SE Posts: 341 Member
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    Hi, my name is Rose, and my 10 year old daughter Laura has Down Syndrome.
  • babyberger
    babyberger Posts: 10 Member
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    Hi my name is Melissa and I am happy to have found this group. It seems quiet right now, but I am hoping we can change that ;) I am a 37 (almost 38) year old mom of 3. 19, 8, and 6. My oldest is in college and besides having some difficult events in life was really easy to raise. Now my younger two are a completely different scenario. My 8 year old son as Asperger's and we knew at a pretty young age so with early intervention and lots of therapies is doing pretty well. We still have good days and bad days and of course even within those good days there are some very trying moments. I thought raising a child on the Autsim spectrum was dificult until my daughter. We are in the process of her official diagnosis right now, but she is most likely ADHD with comborid anxiety and possible ODD (oppositional defiance disorger). To say she is a handful is an understatement. She knows everything that sets off her Aspie brother and relishes in seeing him upset. Not to mention what she has done to me emotionally.

    My stress and emotional upheaval has led to years of yo-yo dieting and 20 pounds lost and then regained every year, I was always skinny growing up and cant believe I am as heavy as I am right now. Every year I swear that I am not going to regain the weight I work so hard to loose, but as soon as the holidays hit I start gaining and dont stop on january 1st like most people. For whatever reason Jan and Feb seem to be horrible food months for me. I eat emotionally and snack and munch all day.

    Back in January I thought I stopped the vicous cycle and got back on track, but it only lasted 2 days. Today I start fresh, stop beating myself up, and start loosing again! My kids may have special needs but that does not have rule my weight!!!
  • AthenaErr
    AthenaErr Posts: 282 Member
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    Hi, I have a 2 year old daughter with GDD. Its been a miserable year and I have been misery eating. And eating junk because I was just so exhausted caring for her. But as she progresses its getting a little easier and I need to make some time for myself now, try to get back to a weight and a level of fitness where I feel good.

    I am overweight now. I have 2 failed diets behind me. I am planning to use MFP to work out what is going on with my body. It has gone nuts. I am always hungry, its like a switch has been flicked and I cant eat normally any more. So MFP is my friend, i am hoping for some more on here

    Athena
    xx
  • rockercowgirl
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    Hi everyone, I'm the special needs Mom to my daughter who is 9 years old with cerebral palsy, and is completely wheel chair bound. This last year was a really hard year for us, as my daughter had 5 surgeries, and was down for recovery most of the year. She was home-schooled for years because the school district we lived in didn't really have a good special education department, but thankfully we moved to a good school district and now she is in public school.
    So now I've got a little bit a free time for myself, the first free time I've really gotten in 6 years, so I'm being productive with my free time and working on finally improving myself. I'm using my time to work out and finally start to eat healthy, as well as I will be starting college this fall.
    Right now I'm the heaviest I've ever been and it really bothers me. So I've got my goal set to get back down to my weight before I had my daughter.

    url=http://www.myfitnesspal.com/weight-loss-ticker]10024796.png[/url]
    Created by MyFitnessPal.com - Free Calorie Counter
  • autismmomx2
    autismmomx2 Posts: 5 Member
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    Hello everyone. I am the mother of 3 boys, 9, 5 and 3 months. My 9 year old has classic autism and has very little functional speech and my 5 year old has high functioning autism with severe sensory processing issues. So far so good with my 3 month old, as I am seeing social smiles and hearing cooing that I never saw with my two older boys, but I am trying not to get my hopes TOO high.

    My kiddos are awesome, but they take a lot of time and energy, between therapies, IEPs, school, doctors.... even just regular outings to restaurants, stores, the mall can be a huge production. I have terrible eating habits and I don't really know how to cook. I want to learn how to live a healthier lifestyle, for me and my kids. Luckily, my 5 year old's favorite food is broccoli and my 9 year old loves apples! That's a start, anyway. My husband and I both need to lose weight, and I am hoping we can use this as a tool to help us.

    I had gastric bypass in 2003 which STILL results in me vomiting a LOT. My teeth are completely destroyed like a bulimic. I am finally going to face the dentist and hope that will help me with the variety of food I can eat. I am just so embarrassed to even see the dentist. GAH!

    Anyway, I hope to meet some parents like me who can use support and friendship during this journey! Best to you all!
  • laurajean2
    laurajean2 Posts: 52 Member
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    Hello my name is laur a and my son matthew who is 8 was born with downs he goes to school with other kids and is going to be in 3rd grade this fall.
  • orchid100ca
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    So glad to have found this group on here. I have only been a member of MFP for a few days now, but those of us with children with special needs can truly appreciate how hard it is taking time for us, let alone losing weight.

    I am a mom to 3 special needs children. I have a set of fraternal twins, boy/girl, whom were born 3 months early. They are now 6 and a half. My son has high functioning autism and his twin sister has global developmental delay. My youngest girl, who is 4 and a half, was diagnosed with congenital heart disease when she was 28 days of age. She had open heart surgery at 4 months of age. As a result of her being so sick her first year of life, she is delayed in all aspects of her development. As well, she also has an eye condiiton which has already required one surgery, and will more than likely require another. We are also looking at a very probable and likely diagnosis of ADHD for her when she starts school.

    Needless to say, my life is very busy, but I wouldnt have it any other way. Due to the nature of how they came into this world, and all the diagnosis and appointments, I've lost myself along the way, and my health is an absolute mess. As I'm sitting here typing this, I am a stones throw away from being diagnosed with type 2 diabetes, have high blood pressure and cholestrol, and I'm only 30.

    Thanks for taking the time to read.. Feel free to add me.. :)
  • CriosDubh
    CriosDubh Posts: 60 Member
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    I'm Tara, and I have five kids, ages nearly six to just fourteen. My oldest has no formal diagnosis but has severe intellectual disabilities, seizure disorder, and autism. My second and fourth have ADHD and anxiety, but are otherwise typical. My third and fifth are completely typical, yay!

    I struggle with stress eating and prioritizing myself last. I am a SAHM. I had always pictured myself returning to school and then gaining a paying job in the medical field (nursing or pharmacy), but I am currently thwarted by circumstance and a DH who feels that I would be more gainfully employed in the IT field despite the fact that I have zero interest in that area, despise sitting down, and wrote my last program in FORTRAN 77.

    To keep myself in shape I currently practice taekwondo, in which I recently earned my provisional black belt. I also swim, run, and do weight training reluctantly. I bike when I get a chance, too. I want to lose about 15 lbs so that my feet will stop hurting, though I suspect that part of the pain has to do with my penchant for breaking wood planks with my bare foot.

    My user name means "black belt" in Gaelic, if you were wondering.
  • 180farm
    180farm Posts: 230
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    Hi
    My daughter has prader willi syndrome, has low muscle tone and multiple developmental delays. Her major issue is dealing with food. She is missing the gene that lets her know she's not hungry. Not only is she starving all the time but actively seeks out food. As you all know caring for a special needs child is tremendously time consuming and emotionally draining at times. It great to find a group that understands the craving for a brownie after seeing a specialist or attending an IEP meeting.
  • laurajean2
    laurajean2 Posts: 52 Member
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    Hi, my name is Rose, and my 10 year old daughter Laura has Down Syndrome.
    hello my name is laura and my son matthew who is 8 also has down syndrome.
  • MrsR0SE
    MrsR0SE Posts: 341 Member
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    Hi Laura - I'm sorry to see you've deactivated your account! I've just seen this today - if you come back let me know xx
  • VanessaHeartsMasr
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    Hi my name is Vanessa. My middle child Michael was born with a rare gene mutation which caused him to have developmental delay and macrocephaly. He also has severe ADHD. Raising him has been the biggest but most rewarding challenge of my life. Some days he exhausts me so much, I wonder how I'm able to function, let alone work on my health.

    I also have 2 other kids who are typical: a 19-year-old daughter and a 2-year-old son (huge age gap :smile: ). Anyway, it would be nice to have some other mommies in the same boat as me to talk to. Feel free to add me!

    Vanessa :smile: