Grief

While googling at 3am the other night I found this really great article about the grief process when a parent has a child with special needs. It really explains and validates that what we do go through is a grief cycle, I think this is the hardest thing for parents of typical children to understand. The little bundle of joy is born with so many hopes, dreams, plans and expectations from the parents and when those are taken away / changed to a certain extent there is a period of mourning for the child you didn't have before you can celebrate fully the child you do have who comes with his / her own set of special gifts.
Its a long read but I thought worthwhile
http://www.is-tac.org/content/7733e76ac24dc7b3ed7d75f5ba9893b9/Ken%20Moses%20Parent%20Struggle.pdf

Ryan had ABM therapy today as I'm off for Christmas so I figured I would squeeze in another session with some Christmas money he was sent from some very nice relatives. He was pretty grumpy though the whole session. Nancy gave me her spare table to use at home with Ryan which should be a big help. After the session I glanced at his ear and blood was coming out. Not dripping but dried up around the entrance. John had noticed the same thing on Sat, and Dr B had said his tube in that ear was lying sideways so I'm thinking it may be from that and maybe the tube is irritating him. We are heading the ENT on Thursday to get it checked out.

Its amazing how many people have said to me that Ryan says Hi, all his therapists have noticed it and his babysitters. But arnt they supposed to babble first before saying their first word? ;) Well as we all know Ryan didnt read the baby books before he was born and follows none of the rules. Ryan turned around to the lady sitting beside me in mass on Sunday, looked right at her and said Aiii. She said Hi back so I don't think I'm imagining things. LOL We have a speech evaluation scheduled in the new year so hopefully we can get rolling soon on that therapy.

After much much searching I finally discovered a special needs playgroup in my area. It meets once a week on Weds between 1-2 (perfect time!) and is for 20 month olds to 3 year olds in EI. While Ryan is playing they have a support group for the parents. I told the lady that I was doing it for purely selfish reasons as I was looking to meet other mums in the same boat, and she said that most of the mums come thinking the kids need it and realise early on that its a greater help to them. I'm excited to find something like this close by, lets hope it works out for both Ryan and I.

Comments

Jennifer Thayer said…
Thanks for the article link! I love reading anything that can help us "deal".

I love your blog and hope you don't mind that I'm stealing your playlist idea and 2 awesome songs for Roa's blog! "He's my son" made me cry!
Ellen said…
Hi there. I've read Ken Moses' work before, he's amazingly on-target and inspirational.

I'm glad to have found your blog. Ryan is such a cutie! You know, Max also never babbled, "Hi!" was his first word, too! Evidently, he didn't read the developmental books, either. :)

It is amazing that you found a playgroup for kids with special needs, I wish I could have had one of those.
Emma said…
Thanks for the article. Please say "Hi" back to Ryan :) from his (maybe some day to meet) friend, Ana.

It's so great that you found a SN playgroup. I have no such luck, still searching though.
Anne Marie said…
Marie Clare
I thought I'd leave my first comment here! I think this is a fantastic blog full of wonderful insights and I hope you don't mind me sharing it more widely.
I found the article on grief really interesting. We called in to our lovely new public library on Saturday and I picked up a book about grief as how we cope with loss is something that is very interesting to me. We talk about 'breaking bad news' in medicine and bad news can take many forms but usually it has to do with loss. Finding out that you have a condition like diabetes and knowing that it will have an impact on the rest of your life is a loss. Knowing that you have pain that may not go away is a loss.
Anyway, thank you for sharing all of this. I'm glad that it helps you but I think it will give even more to others.
Anne Marie

Popular Posts