Support from Other Moms with a Child Who Has Sig. Disabilities/medical Needs

I am also a stay at home mom with 2 daughters that have special needs. I also do home daycare for 2 families as I love children and I also like that I am helping other parents by taking care of their little ones while they work. My 5 year old has a rare chromosome abnormality and my youngest is Down syndrome. Both girls are doing wonderful and are very active. We do have lots of therapies but if they didn't have them, they wouldn't be where they are today.

Hi J.,
Although I am only grandma, I do understand what you are going through. My son and daughter-in-law have 5 children ranging in ages 10 to 1. They live around the corner from us and I am very involoved with them and helping in their care. The 2 yr old has Down Syndrome and has had multiple surgeries and constant doctor appointments and isn't done yet. She sees speech therapists and physical thereapists as well. Every time I turn around she is going to another doctor or specialist. I attend almost all her doctor apts, have spent hours and weeks in Kansas City for her apts/surgeries, etc. We have lost her twice on the table during surgeries, but she is a trooper and pulls through. She no longer has her G-tube and is finally eating well and gaining weight, although she remains small for her age. Her 1 yr old brother is bigger then she is. If you haven't done so already, you might want to check into Rainbows United. They offer all kinds of help and they can direct you to so many helpful resources. We would have been totally lost without them. Through them we were able to receive some in-home nursing when Daytona was younger, and they even qualify to have someone come in and sit with the kids for a couple hours here and there so they can get out and take a break. At least that would be a place to start and go from there. I wish you all the best. I know it is rough and sometimes you feel like you just can't go on and need a break, but these little gifts from God are so precious! Take care and God bless you and your husband as well! V.

I can't relate to you,however after reading this I will ask God to help you and your child I know he will guide you just like he has done for my family.

Congratulations on your new baby! I just wanted to say that. So many people say "sorry" for our situation, but people forget to celebrate that we have a sweet baby boy. I am sorry that your sweet baby has so many needs. I had a premature baby that had a congenital heart defect. At three months of age, he receieved a heart transplant. He requires ALOT of medical attention. We go to Children's Mercy Hospital at least several times a month for post-transplant care and for his GI issues. He also has a g-tube. He has speech therapy (to help with his eating) and phsyical therapy once a week. He receives 6-7 types of medicines several times a day to prevent rejection and for his reflux. Even though he requires so much attention, we are paving a way for him to have a normal life. The first year has been VERY difficult. I never leave the house with him b/c he is immunosuppressed. But once their immune systm is up and spring is here, I have a feeling we won't feel so overwhelmed. We'll be able to go outside and spend quality time with our kids. Also, my son has a website at www.caringbridge/org/visit/brodytucker and you can contact me through there. Hang in there. But sometimes that's easier said than done:)

J.,

I know what you're going through. I too have a child with significant disabilities. I have twins that were born quite prematurely. They are 9 years old now though. We've come a long way. My oldest had a severe cerebral hemmorage before/during birth and suffers from cerebral palsey, seizures, cortical visual impairment, severe developmental delays and then some. He is an absolute joy to be around. There is nothing sweeter than his laugh. My youngest son has no issues from his premature birth. I laugh when I remember the docs telling us that if he didn't have physical difficulties, he'd surely have learning difficulties. Well, he qualified for the gifted program at his school this year! He is every bit as big a miracle as his brother is. We too struggle trying to keep up with school, therapy appointments, doc appointments, and normal life.

Hi J., I am also a mother of a special needs 12 yr old. I also have a 18yr son and a 1yr old daughter. Both of them are fine. But as a mother of a special needs I as well understand the needs of feeling overwhelmed and in need of any type of support. I have asked that several times, at times u feel like u are all alone. We don't get out and do much. My husband and i both have to work outside the home and then my daughter shania is a bigger girl and it is hard for her to get out and do ALOT of stuff. I have always wished that we could be around others more,and let her have as close to a normal life as possible. I feel bad because we just are home alot. We live out in the country so there aren't any kids her age and she does go to the state school. About her history, she suffered a brain tumor at the age of 7 months and then also had to have a shunt& mickey button. And then at the age of 4 she suffered a stroke. She is delayed in alot of areas but she is a very sociable girl, as much as she can be. We have to give her just water and meds thru her button. She can eat by mouth. We have gotten some help thru our Senate Bill 40 Board in our county.They provided for her some respite care and a computer and a special needs bike. They were very helpful. Oh and some Thereaputic Riding at one time. I hope some of this has helped in some way. If i can be of more help please let me know. Take Care.

J., I am an aunt of a special needs baby boy...who received three organ transplants after Thanksgiving last year. Blake is now one. Rebekah, my sister (Blake's mom), is also pregnant with unexpected (but delightful) twins...her website is www.blessingsforblake.com and I would bet she might be able to offer some great advice. Today she is driving home FOR THE FIRST TIME SINCE THANKGIVING with Blake (couldn't do an Angel Flight because of her pregnancy)...she's been living at the Ronald McDonald House, in Omaha, next to the pediatric organ transplant hospital.

I will pray for you and your little one...M.

Congrats on your babies. I too am a mom of a extra special child. He is 6 now. The first few years were rough only because I was tired of all the therpist coming to my home. But you will find a balance. If you live in Missouri I highly reccomend checking out the First Step program, they might be able to put you in touch with a local moms support group. Also check with your insurance some pay for restpite care. I am sure I am spelling it wrong but my son recieve an Aid who comes to my home a few hours a week and takes care of only him. This allows me time with my other kids, Doctors appointment, or just some plan help. My son does not talk or walk so sometimes its nice to have a helping hand for baths, trips to the park. Althought life has been challenging with my son I enjoy him as much as the other children I have. I have found my other kids are more careing and sensitive to others. My best advice is dont be afraid to ask for help and ask that girlfriend out for a cup of coffee. I also try to keep my life the same as it was before. I take my son in his wheelchair everywhere we can, movies, dinning out, park trips. I treat him the same as the rest of the family. Also In the beginning I blamed myself thinking I did something to deserve this but I and you did nothing wrong. I feel bless to have an extra special child to care for. It has taught me greater paients among other things.