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Post by monicag on Nov 7, 2010 16:36:00 GMT -5
Jesse will be 7 on November 11th. I can't believe we are at this age...
How will I cope? How will he cope? He is incredible and can spell words like umbrella...but can't speak.
I am 47 and tired. But each day brings new things. I'm not sure he even understands what a Birthday is....Does it matter? He loves nature, water, trees, wind, leaves. He is so happy one minute and frustrated the next. He makes is sister and brother laugh and cry...mostly on the same day...every day. They are embarassed when he screams and yells in public but laugh hysterically when he toots and giggles for 5 minutes about it. It is all so crazy...but makes you laugh and cry at yourself. He'll never own a house..but then he wont' have to deal with a mortgage an bills. He may never get married..but he'll never know the pain of divorce either. He'll never drive a car...so he can't ever crash one either. I still have such crazy hope...that I'll wake up one day and he'll talk and things will just be normal...whatever that is. Anyone relate?
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Post by wuvmyangel93 on Nov 8, 2010 3:02:02 GMT -5
Monica
Huge hugs, and know that as impossible as it seems right now Jesse will do amazing things in his future.
Yes he may never speak, but he does have many opportunities now that weren't there just a few years ago. 3 years ago 1 college was there for children with special needs now there are 47 and many more have opened learning centers on campus, 2 colleges are just for special needs students.
Keep your options open you never know what the future may bring and believe me I'm right there with you not knowing the future for my now 15 year old.
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Post by Myra on Nov 8, 2010 8:27:48 GMT -5
Have you tried any Assistive Technology DT devices with him? In Florida we have a place called FAAST and they have a lending library of devices so you can try before you buy. They even have apps for Autism on the I phone now. itunes.apple.com/us/app/autismtrack/id391660393?mt=8I don't know what the future holds for John. Mostly I take one day at a time. I often joke that he can be a big computer geek and earn lots of money to take care of me in my old age since I have devoted so much time, money and energy to autism that I will be broke by then. The girls can give me grandchildren, John has to take care of me and live in my basement if that is what makes him happy.
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Post by monicag on Nov 21, 2010 18:32:13 GMT -5
Jesse has a tech 128 but he has to be prompted to use it. He loved the Ipad when they tested him on it....he loves my Iphone that work issued to me. SO hard to know where to go next?
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Post by babs on Nov 30, 2010 1:24:36 GMT -5
I get it, Monica. I so do. ((((hugs))))
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Post by Clara Hinton on Dec 1, 2010 15:13:25 GMT -5
Monica,
I can get it -- but not totally because I haven't walked a mile in your shoes. That being said, I can cry tears with you and I can rejoice with you over Jesse's accomplishments and the wonder of it all.
I know this: God does NOT make mistakes. I must continue to believe that or my entire life's work and everything that I currently believe would be futile. I believe that God has special plans for Jesse, and for each and every child that is here with us (as well as for those who have left this earth far too early.)
I'm hoping and praying that you will be lifted up by prayers and support and that in the days ahead you will continue to do as Myra has reminded us all to do: Take one day at a time. One day, one step, one moment, one breath, one prayer, one smile, one hug, one tear. Just one.
I'm sending you great big "mama hinton hugs" on this day. I can't wait to see you and Jesse again in person! It doesn't seem possible that your little man has turned 7 already!!!
Love, Clara
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Post by monicag on Dec 3, 2010 2:46:00 GMT -5
Yes Clara...I can't believe he is 7 either. I do try to take one hour at a time...sometimes it is down to minutes. This is honestly the hardest thing I've ever done...all the hip surgeries as a child, the pain of torment from other kids because of it, the pain of 3 losses, etc. Those things seemed to have a peak and then I learned to live with it. Jesse is constant...there seems to be no breather...I know so many people say "Take care of yourself" but I find that nearly impossible (see I'm on here at 2:30 in the morning...can't sleep). I really don't know what that looks like anymore. And if I do manage to take time for me I wind up feeling guilty. It's all so crazy when I write it out here. I do need to care for me so I can care for the rest of them. Wish I knew where to start? With all of your kids how did you manage to steal time away?
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