Hi all, hoping to hear from both parents of children with spina bifidia and parents who are affected as well.
My partner and I are planning to adopt (not at all fond of the idea pf pregnancy and with how much I fall I can't imagine how much jostling a mini me would have to endure!). We have come across several children with spina bifida who we feel would be good matches. My concern is whether or not I would be physically up to the task of taking care of a child with physical impairments. We are looking at the 2-6 year old range.
From my own childhood I remember my parents carrying me *a lot* way past the age most kids are carried, because I had such a hard time walking. I crawled really really fast but my walking was poor. Are children with SB generally able to crawl/pull up/learn to transfer, even if they aren't able to walk/walk well? Are there any adaptive aids for lifting small children? If a child is still unable yo walk at 6, is there much prospect of gaining walking mobility at least around the house or should we be planning to alter the house/look at new, more accessible properties? My ability to lift is limited and most kids I have taken care of adapt but they have also not had physical disabilities! Most of the websites I have found for adative parenting aides seem out of date/not working/don't provide items/services in my area.
My state offers pretty decent adoption assistance, especially for children with disabilities, as well as medical insurance which also covers in home health care so we would likely get some form of in home help but I want to be able to do as much as possible with my future children.
Hi. I have a 3-year-old son with spina bifida, so I can talk a little about caring for a young child but my experience only goes so far.
Every kid with spina bifida is different, and there's so much variation in their mobility, so there are no easy answers. If there are specific children you've come across, you may need to get more details about their medical needs and their mobility to have a clearer picture of what it would be like. My son figured out crawling pretty easily at a "typical" age and was able to get around the house that way. Even on the stairs, although we watched him pretty closely until we were sure he could do it safely. Standing and walking were a lot harder, but he had lots of physical therapy and they helped us get set up with mobility aids around age 2. He has a walker and forearm crutches now and uses both at home-- the walker is harder to fit in smaller spaces, but the crutches required more strength/balance so he's only been using them for the past 6 months or so. He gets around the house pretty well. Going places outside the home is more difficult because he does get tired easily, and my husband and I are finding it harder to carry him long distances. As far as pulling up to stand, he can do it as long he has something stable to lean on (a table/chair, or someone's arm). I'm not sure how typical he is. Some kids his age walk on their own; others need to use a wheelchair. So far he's kind of in the middle-- we expect that when he gets older he'll probably continue to walk at home with crutches but might want a wheelchair for traveling longer distances away from home. One thing that is starting to frustrate him is that he can't carry anything (his cup, his books/toys...) when using the crutches and needs to ask for help.
Some things you might want to consider:
-- do you have family / friends who live near you that might be available to help? (My son needs to be catheterized every 3 hours and my parents are afraid to try doing it, so for a long time my husband and I couldn't be away from Emmett for more than a few hours. Now my sisters have learned how to do it and can watch him for longer periods if needed.)
-- is your partner able/willing to do the majority of the "heavy lifting" when you're all together as a family?
-- do you already have your house set up to make it easier for you to get around? Adaptations you've made for yourself will probably also benefit the child. If your home isn't all on one level, you could still set things up to try and minimize the number of times either of you needs to go up/down the stairs each day (i.e. multiple diaper changing and nap areas)
-- what kind of services are available in your state? We are in Massachusetts. I don't know anything about adoption assistance, but our son's spina bifida diagnosis entitles him to several helpful things-- a state health insurance supplement (we have private insurance, but this covers everything else so that we don't have copayments), and free Early Intervention services from birth to age 3. The Early Intervention is amazing because the therapists came to our house. Emmett had physical and occupational therapy every week in our home. This was especially helpful because the therapists could see what our house was like and take the needs of the whole family into account. They were very creative and knowledgeable. Now that he has aged out of E.I. he still gets weekly therapy that is covered by our insurance, but I take him to the hospital and have to spend more time explaining things like "That stool you're recommending might not work for us because our bathroom is tiny; we need something that can fold up."
As far as making alterations to the house, our plan so far has been to hold off until Emmett is older and we have a better idea of what he needs. We never could have anticipated everything back when he first arrived-- now we know that we'll probably want to install some sort of bench to let him sit when he takes a shower, and probably build a ramp from the driveway to the door. He can do short flights of stairs with his crutches, but we get a lot of snow and ice in winter. If I fall down the stairs at least once every winter, I'm sure he will have even more trouble!
You may have some unique challenges to figure out, but at the same time it would be a great gift for a child with spina bifida to have a parent who can really understand them and give them advice from direct experience. Most of us parents are doing the best we can to see the world through our children's eyes, but it's hard with a young child who doesn't have the words to explain what he thinks and feels.
I have two girls with SB, one bio and one adopted. I'm not sure on your questions, but have adopted twice (I have a little one I adopted with OI as well), so if you have any adoption questions I can try to help
Jamie, mom to Conner, Ramya (SB), Deena (OI) and Madilynn (SB) and wife to David. Madilynn was diagnosed in utero with spina bifida and hydrocephalus and Ramya also has spina bifida and hyrocephalus. Check out our blog at www.aworthyjourney.com!