Our son Garrett has a mitochondrial dna depletion syndrome, exact gene(s) unidentified. Our oldest child, Addie, probably has it as well. That leaves our gorgeous ball of energy, the middle child, Ainslee, appearing to be untouched by this disease. Follow along and peep through the window at our victories, struggles and lessons learned living with mito.
Wednesday, March 30, 2011
Today's Psychology Visit.....Rollercoaster Tickets, Please!
Garrett had his second of two 3 hour psychology evaluations today. In three weeks Grouchy and I will meet with the psychologist for 1-2 hours to learn the results of her evaluations and the pages and pages of evaluations Garrett's teacher and I completed for the psychologist. She will reveal to us the school and therapy recommendations as well as recommendations for assistance for self help educations, behavioral therapies he will hopefully be able to get at home, as well as therapy involving the therapists taking him out in public to work on daily living skills in the real world. Then a couple weeks after that meeting, she will give us the information on paper to share with the school system as we try to best navigate his Individual Educational Plan, or IEP. Even if the appointment was for an evaluation today, I used it to talk to the psychologist for quite a while as Garrett only took about two hours of his three hour slot. And I learned a lot......that I already knew. Let me explain: I have known for some time that Garrett would likely test with a low IQ, were he tested. I also have come to the reality that Garrett will likely not be independent. Well, those are the things that today, I was told were the case.....by a professional......someone who hasn't gradually watched this develop....someone who hasn't been alongside us encouraging us and in the fog of denial.....but a PhD who is looking at my son, completing the testing, and when I ask, dropping the grenade.....the grenade I had pulled the pin on but not yet thrown! While we were talking and we were going in the direction of services that might benefit Garrett, the psychologist mentioned that "with his IQ...." And I stopped her to ask if she had his IQ determined and what it was. It looks like his is in the 60s, and that is below 70, which lands him in the mentally retarded category. Ouch. Not news to me, but news coming from another face, ouch. It's real. She went on to say she would not give him the label/diagnosis of mentally retarded at this time because his scores for the evaluation of IQ are all over the place. So like Garrett....nothing simple or standard. So while in some ways he is low, low, in other areas he has these spikes of very normal.....so with scores calculated he ends up retarded, but she has a hard time resting on this for now. She said that the mentally retarded label is very, very hard to ever remove, so she doesn't want to rush into that now. She also said that we will have her evaluate him again in 2-3 years when he is closer to 8 years old, and his brain is more solidified into maturity of development and his language skills may be farther along. Apparently, language skills are very tied to IQ because even if the language skills are not verbal in nature, it takes those skills in the brain for more cognitive areas of the brain to develop. Hope I gave that justice in the way I explained it. So while we are seeing he has more than the previously blogged "injustice" of being labeled delayed, he still is developing some, so there is a little chance his IQ may test a bit higher closer to 8 years old. Gulp, tears began to try to build up, but I swallowed them well. And he can grow and learn and maybe have a higher score next evaluation. Then we started talking about therapies more and then transitioned to talk about plans for the future. This is when my world came to a screeeeeeeching halt of my fears, but my gut knowing....... She said that with lots of certainty, she can confirm he will always need assistance, long term care.......oh crap......She said he would need help throughout his life because of his extreme impulsiveness and all of the "stuff" going on, or not, in his head. So she believes what I fear, that he will always need help, always need physical/psychological assistance from another human on this planet. Uuuuuggggghhhhhh. Let me stop here. I do not in ANY WAY mean to sound above caring for my son. I know some of you reading this either have had or still have an impaired child at home. I worship you all. I aspire to be the best I can be in this life, and I know those of you walking this path ahead of me are being your best. You are amazing!!!!! But honestly, brutally honestly, I do not envy you, never desired to be you, and quite frankly, do NOT want to be in your company. I do not want to join the club, go through initiation, get the handbook. I am not ready for this. I did not sign up for this. I am horrified, disappointed, and already completely exhausted. Completely. Tomorrow is a new day. Rest will help. Realization that we need more help with our child is a constructive thing. Knowledge that more help is ahead is good. Making a plan will be huge. So nothing was new to me today, but having it solidified by someone else and not hearing the usual "he is delayed, it will all work out, I don't know why he is like he is but he will catch up, have a nice day," was jolting, comforting, horrifying, emotional, and , well, relieving. So we bought more tickets for the roller coaster. No, we didn't buy them. We never got in the line at the ticket booth......hell, we never drove the damn car to the stinking fair in the first place. We simply decided to have a third child. We didn't care what gender the child would be. We didn't aspire to parent a prodigy or NFL player or Olympic athlete. Average was fine. Above average would have been smokin' hot. We just prayed, as most Christian parents and some non-Christian parents pray, for a healthy child. And mental instability was my greatest, greatest fear. So we must have gotten free tickets in the mail, won a drawing of some sort that we forgot we entered, or found the tickets on the floor at the grocery store. Here we are. We are now on the ride and I am trying desperately to find the seat belt and lap bar so I don't fall out as this thing lurches out of my control........But no matter what, we are on the ride and I will NOT turn away from my son and his needs!!! And last, thank you to my sweet mom and my dear friends whose shoulders I wept upon today. And to my sweet, sweet Grouchy: I love you and I am so sorry. Godspeed, and I promise to put on a happier face and get back to photos and positive vibes.....I promise!! Clara-Leigh
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Clara Leigh, I am so thankful that you moved here and I have the blessings of knowing you and your family. You are such an honest and open person and your post show the love you have for your family and everyone around you. You didn't get free tickets to unwanted roller coaster ride, you won the lottery. You are so very blessed in many ways. Including the struggles that you have to deal with that seem to be unfair. Garrett has a spirit that shines brighter than most. Even when the words coming out of his mouth don't sound so angelic. They are just words that get a reaction. You have been blessed with daughters that are examples of the love you have raised them with. You have a husband that is willing to travel across the country just to be with you and loves his family. We are blessed to know you and your family. Thank you for letting us be part of you life.
ReplyDeleteClara Leigh,
ReplyDeleteI love all of y'all. God Bless you and Oscar, and all of your family.
Mike
I love you and miss you and wish I could give you a big hug and kiss! You are an awesome wonderful person and mother, you amaze me! I have often said to people "I have an amazing friend who is the image of Christ on earth! Her name is Clara-Leigh, I wish you could meet her!" My heart breaks with the reality and it leaps with hope and love for you and Oscar and the kiddos. MISS YOU!!! LOVE YOU Sista'!
ReplyDeleteMy heart breaks with you, friend.
ReplyDeleteI'm so sorry. I don't know this particular experience, but I know the feeling of knowing something about your child in your gut, but hearing it from someone else that really knocks the wind out of you. Hang in there.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteOh Clara Leigh,
ReplyDeleteI am so very sorry for your heartbreak.
L
CL,
ReplyDeleteSweet, sweet girl, I hate it for you, I really do. Please know I think about you and your family every day, even here in the big ol' city with millions of things going on ... you are still my best friend. And I know you will get through this - with humor, grace and compassion, just like you do with everything. It's just who you are.
Love,
Erin