I Need Help from Other Mom's with Special Needs Kids

Updated on May 08, 2010
J.R. asks from Big Lake, MN
9 answers

I have a daughter that will be 3 in Feb. and dev. and mentally she's only about 8 months old. She doesn't walk or talk but does crawl. I'm really starting to have a hard time adjusting to parenting her. She's an absolute princess and a blessing to have around but it breaks my heart to know that she's getting too big for me to handle on my own during the day. She's 38" tall and 38 lbs. I'm 5'6" and 135 lbs. My back and arms are aching all the time from lifting her and even though she has a wheelchair for out of the home it's almost more of a pain to use than just a stroller. I was almost in tears this morning because I lifted her up into her highchair and almost broke my back. I know someday I'll have to get a PCA for her to help but at this point I'm just not ready for that. She doesn't really have any medical needs.
Anyways, I'm writing this hoping that there will be other parents out there with more experience that can tell me what your hints and tricks are. How do you make things easier for yourself, what do you use when diapers, high chairs, strollers, etc just aren't big enough for your child? Depends are huge and there's nothing in between.
Thanks for any help,
J.

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K.J.

answers from Sheboygan on

Just a few suggestions. My 3 year old daughter is about the same size. I used Overnights diapers for her when she was still training and still use them for nighttime, because I could find any other diapers that were big enough. They are pull-ups, pretty absorbent, and go to very big sizes. Could you try a booster seat at the table, rather than a highchair?
I'm not sure what a PCA is, but you can check with your local social services agency and see what help is available. In the WI county where I worked, there was respite care available. For me, I like to have a few backups for care providers anyway, in case of an emergency in the family or something. (I learned this the hard way.) This way, there would be someone who already knows your child. You deserve a break once in awhile, too, family emergency or not! I wish you the best.
K.

1 mom found this helpful
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R.S.

answers from Eau Claire on

I would like to be your friend. Jim and I have two special needs sons- Joseph who is 14 is Down Syndrome, and Paul, who just turned 18 has Sturge Weber, which means he is developmentally and mentally delayed. Paul functions at about a 1 1/2 year old level mentally, must be fed, diapered, bathed, dressed. He does not talk. He does walk which is a wonderful blessing though he didn't learn until he was 5.
Here are some local people who have helped us: Lauri Malnory, parent facilitator for special education. ###-###-####. email: [email protected]____.com
There is a wonderful lady in Chippewa Falls, Winnie Cook. resource lady for all the questions you have. She knows all the programs availble for special needs children. ###-###-#### ext. 3015.
Kay Evanson is a family suupport coordinator. ###-###-####.
Dept of Human Services
721 Oxfgord Ave.
PO Box 840
Eau Claire, WI 54702-0840
www.co.eau-claire.wi.us
Roy Sargeant ACSW, is director

Kay Evanson sent me papers to apply for Children's Miracle Network of Gundersen-Lutheran in LaCrosse. If you qualify you can receive $500 respite for Peyton.

Winnie Cook told me about a company in Minneapolis that gives diapers Free if you qualify. We are on Badger Care and don't.
I know there are programs to help called Head Start for early intervention but I don't know phone numbers. I believe Lauri could help there.
Peyton is eligible for social security income also. ###-###-####.
Paul has been diapered all his life and we found companies online that have a variety of sizes of Attends. Right now we are ordering them from AZ and three boxes means you don't pay shipping.
I hope this helps a little. We don't know what you are facing but we know what we are facing and we know the Lord has been our suffficiency over the years. God bless you.

R.

1 mom found this helpful
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B.

answers from Minneapolis on

You definitely need and deserve some support - parenting a child with special needs can be really difficult on many different levels. First, I would suggest checking out Early Childhood Family Education (ECFE) classes. They have classes for families with children with special needs. It would be a great way to meet other moms and dads who understand the challenges and rewards of special needs parenting. There are ECFE classes in both St. Paul and Mpls and possibly in other cities too. Just do a google search and their website will pop right up.

You might also want to check out ivillage.com. They have parenting message boards for all sorts of parenting issues. As the mother of a preemie, I found the Preemie message board shortly after my son was born and it has been an incredible resource for information and support. I am sure they have a board for parents of special needs children.

Finally, are you in touch with the school district in your area? Most school districts have early intervention programs that put you in touch with therapists and other support people. Those folks will not only be able to offer actual therapy, but will also know of other community resources for you and your family.

Best of luck to you - I hope some of these suggestions will help.

B.

1 mom found this helpful
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C.N.

answers from Wausau on

First of all, GOD BLESS YOU!!!!!! I am in school in CO, moving to WI, to be a Special Education teacher and having a 7 month old baby girl, I am empathetic as I can be to your situation! I will be praying for you! As for helpful hints, I can give you ideas from my schooling, they are not practiced yet, so I'm not sure if they are "good on paper" or in real life.
1)There are ways to pick up heavy people that can help to keep your back from breaking, I'd reccomend seeing a nurse at the hospital/clinic nearest to you and ask for her/him to show you how they were taught...this will give you a medical friend to help you get more aquainted with the idea of a PCA and help your back!
2)Even menatlly challenged babies can learn sign language, this may help her to help you...learning "eat", "dirty" (for diaper changes), and "play" can be huge helps to you and your daughter.

Good luck and God Bless! Again, I will keep you in my prayers for both your daughters;and your sons-to be adopted:)

1 mom found this helpful
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A.S.

answers from Minneapolis on

I would suggest that you contact Fraser.org It's a preschool/nursery school-nonprofit that serves children of all abilities. They more than likely have support groups for parents such as yourself. You may even be able to get services or suggestion from them too!

Sincerely,
A.

1 mom found this helpful
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J.R.

answers from Sheboygan on

i have no idea what your going thru but read your story and had to bless your heart.. my friend has a boy with a brain tumor and that is hard to watch also.. can any of your family come over to help when needed or maybe some friends?? if you ever need to talk just to releive yourself just email me at [email protected]____.com keep strong and know that people are praying for you...hugs

1 mom found this helpful
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S.L.

answers from Minneapolis on

I have a 5 year old daughter that was born with Holt-Oram, she is missing both of her thumbs and was born with a hole in her heart and had that repaired a week before her first birthday. She is now too big for me to carry and I have a bad back so I can relate with you on what you are going through. I applied for SSI for her (supplimental security income)and she was finaly approved for it after 2 years of them telling me that she was not dissabled. The money that we get every month for her is used for medical care, personal care items, entertainment, ect. Anthing that would bennifit her along with improvements around the house and stuff. It is worth looking into if you do not all ready get it. It takes a while to get it but is worth it in the end. If you need more information let me know and I will help out the best that I can. I can be reached at [email protected]____.com

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K.B.

answers from Minneapolis on

I just wanted to let everyone know that I have started a support group in the Twin Cities for parents of special needs kids. Hope you will join us! http://www.meetup.com/specialneedscaregivers/

Hi J.,
My daughter is 4.5 with 18 month development. I would disagree that she doesn't have any medical needs. You definately look into help from a PCA agency. They are designed to help you and your daughter out. They can help you in the home with lifting, laundering traveling, dr. appts or any extra help you might need. Keep in mind that you can always hire a close friend or relative or even your own partner if that is what works for you. Without PCA help, I would have had to place my daughter in a home a long time ago. That is what the help is there to help prevent.
I know what you are going through. Have you looked into Early Childhoon Special Education Programming? THey are a really great resource and can get your daughter involved in preschool already which I'm sure she will love! They also offer support groups for families of special needs children which is so key!
I would also recoment getting a social worker. They can help with a lot of these secrets and tricks you are talking about and trained for years to specifically meet your needs. They should also tell you about Medical Assistance and Social Security benefits. After age 4, MA will pay for diapers and supplies for example. You can also opt out of the PCA program and take out the "consumer support grant" which will at least help you out with $1000/month to help you take care of her yourself.
We all pay taxes for these programs which are designed to improve you and your daughter's quality of life so don't hesitate to contact a social worker and get into them immediately! Contact me if you have any more questions.

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T.S.

answers from Minneapolis on

I have a 5 year old boy who has autism, and was having the same issues. Talk to your county coordinator about diapers. When your daughter turns 4 you can get them for free and they have all the sizes you need, and most of the time delivered right to your door! Also, I have back problems and recently joined a gym. Couldn't really afford to, but at some point we have to take care of ourselves! I am working on strengthening my back and my core, and am really feeling the difference in my strength when dealing with my son's fits. It also has allowed me to get some of that stress out that I have been holding on to. I hope I have helped in some way. Stay strong.
T.

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