On the Preemie Babies 101 blog, Laura Maikata wrote an interesting post on surviving the post-NICU roller coaster for parents of preemies. Indeed, premature birth affects children long beyond the NICU, sometimes lifelong. Getting a new diagnosis, facing a new issue for your child is hard. So is the sometimes long time that passes between you as the parent noticing something and getting the answers to whether it’s an issue to be worried about and if so, what the diagnosis is.
It is important at all stages of life as a preemie parent to get support. When your baby is still in neonatal intensive care, this is seen as obvious, but there is little support out there for parents of older preemies. There is the PREEMIE-CHILD E-mail list and accompanying website, but that’s about it.
I wrote a comment on Laura’s post on the importance of support from people further along on their journey. This includes parents of older children with your child’s diagnosis or parents of older preemies, but I wanted to make clear it includes adults with special needs or former preemie adults too.>/P>
As a former preemie and adult with disabilities, I have found that I have been able to help some parents of special needs or preemie children along their joureny. I am not very knwoledgeable, but i can share my experiences and give parents an idea of what it’s like growing up as a former preemie. I can also share, if I know it, what helped me overcome certain struggles that parents are now facing with their children.
On the other hand, I too have been able to gain support from parents of special needs or preemie children. They have the benefit of their child’s doctors and specialists knowing the latest research on their conditions, and strategies that work for a child with my condition, may also work for me.
I remember in 2003 being part of a group for parents of blind children. The group also consisted of a few blind adults. I was the only blind teen on the list I believe. At the time, I was mostly on the receivign end of support, and the parents and blind adults at the time encouraged me to go to blindness rehab (though if they’d known how low the expectations of rehab were, they’d not have liked it). Now that I’m in my late twenties and have gained a fair amount of knowledge on my disabilities, I am not on that particular list anyore, but am on others. I have, for example, joined a group for parents of blind/autistic children, and though I was more capable growing up than many of these children are, I can still help in some ways.
There is often an attitude in the autism community that adults with autism cannot speak on behalf of children with autism. I understand, if for no other reason then because parents are the legal spokespeople for children autistic or not. But I don’t understand that autistic adults cannot provide any sort of perspective for parents of autistic kids. I think both parents and adults can learn from each other, and it isn’t that one group should speak for the other.