When I had Lauren, I left the hospital with a 7lb15oz baby, a handbook on breastfeeding, a handbook on basic (very basic babycare), and normal typical one year development. The handbooks didn't do much. They gave me some basic ideas and numbers to call in dire emergencies. However, for the most part when you bring home your first bundler of joy, you are completely on your own.
There is no section in the book on what to do when your baby screams 15 hours a day for no apparent reqason. There is no section for what to do when your baby spits up and refuses to eat. There is no section on what to do if your baby who has screamed 15 hours a day, suddenly stops and spends the day looking at you with glazed over eyes.
If there is no handbook for typically devloping children, there is definetely not a handbook for special needs. We desperately need one.
We need a section on navigating the school district. What is IEP, MFE, EYS, and IDEA? How can I advocate for my child but not irritate everyone so they go out of there way to avoid me and Not want to help my child.
Where do I begin? Do I take her to neuroglogist? a psychiatrist? a developmental peditrician? How about a genetic counselor? This could eventually move on to the do they need drugs or do I need drugs?
Insurance mysteries: Are they set on denying her just cause? Why can't anything be a covered charge? If I run out of wrapping paper, can I just use an EOB?
Navigating special services: This is a hot one for me. I work for angency whose entire goal is to help people with disabilities yet I feel no one will help her.
How to do deal with other people in public? Should I just hand out cards? Do I really have to hear about your sister's neighbor's cousin that had a little boy who is just like that? Do I have to explain to everyone that she's not retarded? In fact can we just ban the word retarded, unless used in a clinical sense (which 99.9% of the population will never use it in that way)?
How to live for the moment but plan for tomorrw. How do I shut my brain off when I start thinking about what the future will hold? Why didn't I take her to EI when she was 2? Maybe my MIL's right and the meds are harming her?
Will someone please write a handbook on raising a special needs child? I would but I'm too busy raising a special needs child.
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3 comments:
I was going to write it, but I didn't get to finish raising her.
I think we have to become confident and comfortable marching to the beat of our child's different drum. I still wasn't there. Things still bothered me... when I had the energy to think about it. Mostly I was concentrating on not forgetting all the myriad details I had to hold in my head constantly at the ready.
Joy-
Have you ever watched "Table for 12" on TLC.
They have twins, twins, and sextuplets. One of the 6 has severe CP. Watching the little girl is seeing a little bit of Elli.
The parents do things that remind me of you and Scott. They always seemed focused on how can we incorporte her into this activity. Just like you and Scott always did.
Now, that my Ellie is getting a little older, I'm finding myself trying to incorporate Laurne into things like watching a movie as a family. Simple for many difficult for us.
I think about Elli and you on a daily basis.
I don't know what I'm doing is right. Maybe I should be doing B or C instead of doing D.
Joy-
Have you ever watched "Table for 12" on TLC.
They have twins, twins, and sextuplets. One of the 6 has severe CP. Watching the little girl is seeing a little bit of Elli.
The parents do things that remind me of you and Scott. They always seemed focused on how can we incorporte her into this activity. Just like you and Scott always did.
Now, that my Ellie is getting a little older, I'm finding myself trying to incorporate Laurne into things like watching a movie as a family. Simple for many difficult for us.
I think about Elli and you on a daily basis.
I don't know what I'm doing is right. Maybe I should be doing B or C instead of doing D.
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