I took Cyr and Patches to AT yesterday and informed their AT I would not be crying. Apparently she took that as challenge and made me cry. Things were going well the first 3 minutes and then we began talking about their future. We talked about how important it was to me to keep Patches here with us for both her and the other kids. We talked about the new med changes and suddenly things moved to how damaged they are. She said Ruthie, Michael, and Patches are all in the same boat. They are all on the extreme end and will more than likely never recover to have families of their own that are normal. I knew this, I have felt this but hearing someone else say it was devastating. She doesn't want to discourage me or the kids. She feels they will and have made enormous strides in their healing. She just feels they are severely traumatized and will probably never run their own households with a loving spouse and children. I am sure college is not an option for those 3 with their tremendous delays in school.
My DH and I were talking about them on our hot Valentine's date (more on that later) and decided the best way to describe them is that they have been home almost 3 years but haven't matured a day. Things have changed for them but they are still many years behind their actual age. Ella, Ava, and Cyr have matured, their likes and dislikes have changed. They seem older both emotionally and mentally, the other 3 don't. They are also the 3 that are so severely behind in school that "catching up" doesn't seem likely in a hundred years. Patches seems light years behind the other 5th graders, Michael is almost 9 and fits in perfectly in his 1st grade class, and Ruthie is almost toddlerish in many ways.
I am not complaining. I have seen change in other areas, real emotional growth. I adore them and love to watch their self esteem grow. I see them attaching in their own ways. I am saddened as I begin to realize we aren't really talking about RAD anymore, it seems we are heading towards more serious diagnosis for those 3. I know most think RAD is pretty serious and I agree. It always seemed more temporary to me, something to work on. There is nothing to work on with Schizo Affective Disorder, years of therapy won't change it. Michael is hearing voices, his are different. He is becoming scared that he will be like Patches and is reluctant to talk about it. Ruthie loses chunks of time, she does things and legitimately doesn't remember saying and doing things. All the kids are due for another psychological evaluation and I am nervous about the results.
Back to the hot date, the first in years!!!! We went out alone and stayed out long enough for me to enjoy 2 margaritas and get all warm and fuzzy. Cyr texted me that Rosa was crying but upon further questioning, I felt Rosa was fine. She handles the kids beautifully and doesn't put up with their crap. I had given all the meds out before I left and knew they would be eating a late dinner and heading off to bed soon. (I found out later Ella had told Eddie and Gia a very scary story and freaked them both out. Not funny for Rosa but funny that Ella did it.) We came back home with pints of ice cream for the 3 adults. We headed to bed shortly after consuming our fair share to snuggle with the baby. Sound boring? It was the highlight of my social interactions in a very long time. I ordered for 1 person, sat through the entire meal, and even went home with a handsome guy.
Sunday, February 15, 2009
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5 comments:
Sounds lovely. We didn't really celebrate as a couple on the actual day but Wed night we had our first date in almost 3 years! We went to see an off Broadway production of Oliver! It was nice, but extremely hard to leave Jamie (with my mom.) Lots of crying and screaming, and jamie made some noise too. LOL
I don't even know what to say except that I'm sorry. It was bad enough that it was Patches but now to think about Ruthie, Michael too is just really overwhelming.
Know I'm think about you....and you know where to find me.
Hugs {{{{{Rachel}}}}}
Glad to hear you had a good little break and some alone time with your DH. You deserve it!!!
I don't know what to say either. Have you considered homeschooling some of the kids? I have friends whose children were very developmentally delayed and when they began to homeschool them, the children did MUCH better.
I know you have a lot on you, and I imagine you need the break that the public school's can offer so please don't take this suggestion as an attempt to make you feel guilty. But if you felt like you could make it work, this may at least be an option to improve your children's quality of life in the future. (Again, I realize that their quality of life will not improve if their Mom feels like she's going crazy because of the lack of a break).
Here is a list of resources that may be helpful, should you ever decide to try this. I'm sure there are lots of others besides these.
http://www.homeschoolcentral.com/special.htm
That must have been hard to hear about the kids... but from the standpoint of an adult whose mother was told that she would never drive a car, go to college, live on her own, have a job, etc, here's my ass-vice... They'll all be who they are, no matter what anyone says or what their labels are. They may always do things differently from other people, and on their own unique timelines. What is considered a good quality of life for typical people might not be what they end up with, but they can definitely grow up to be happy and successful in their own ways! Just keep loving them like you do, and take one day at a time, and see what happens! :)
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