8 Comments

  1. Tammy
    June 6, 2016 @ 11:27 am

    My Nash is 10 but I had the talk with my IEP group. I wanted to know that he would graduate with his class…even tho I see the work he brings home is not the 4th grade work but 2nd grade work. I fear the future for Nash. It scares me that I cannot freeze him at now…I can make all the decisions. I tell him I am going to put cement blocks on his head so he will not grow up.

    Nash is now making decisions for himself. Like decorating his room in the theme and color of him choice. WHAT? I took him shopping and he found a bedspread he liked and a picture he wanted…framed. Because big kids don’t just have posters on their walls but framed pictures.

    Summer will be great. No tantrums about homework. No fear from me about sitting with him and doing the homework. But, since I work and my husband works and my daughter is in college but works….our schedules are going to be hectic. And Nash wants to do basketball camp and golf. But, this is far better than school where its obvious there are problems. This….he excels beyond belief! I love hearing he is amazing!

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  2. reesertowisner
    June 6, 2016 @ 12:42 pm

    I ache for you, Carrie. I realize that in one great cosmic shift I could’ve been the mom of an autistic child. When I read your column I can’t help but try to put myself in your shoes, ask myself what I would’ve done. But I know that is impossible. I will never fully understand what you feel or how you think or react.

    My best friend’s son is autistic. When he was younger I would’ve called my friend’s role Damage Control. Her son pooped in the furnace vent, melted chocolate on a bare light bulb, and managed to set his parents’ bed on fire. They are all still alive to tell the tales, if a little worn around the edges. Now that he is 24 there is a different kind of damage control. When strange packages started arriving unordered by my friend or her husband, they realized their son had memorized all of their credit card numbers and knew all of their passwords. They have changed all of their numbers and passwords since then, and are careful that their son isn’t around when they place orders on the computer.

    I tell you all this to let you know that I know some of the story, but not all of it. I want you to know that when you are down, when you wonder why you are the one who deals with all of the messes, there are some out here who share your frustrations and heartaches, and would bear some of them for you if we could. Lean on us. Talk to us. We’ll listen.

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  3. Jamie
    June 6, 2016 @ 1:08 pm

    I feel exactly the same we are ready for summer break.
    This year has been such a long roller coaster ride with my 6 year old and kindergarten.
    We got a couple months there where he went to class and followed along like a regular kid. He even went without his aid for a few days. Oh we were excited.
    Of course all it takes to derail is one spring break or one sickness or a substitute teacher two days in a row.
    My baby is going into first grade and i dont know if i could ever have a career because i need to be on stand by waiting for the phone call because he hit an aid or ran away or tore apart the classroom. Or like last week when my super sneeky boys whereabouts were unknown for ten whole minutes.
    I dont like not knowing if he will someday catch up to his peers or if he will hold a job and have a family. We just have to take it one day at a time and hope he can just be at school for the whole day, learning or not.
    I just want him to stay little forever, still draw faces on 12 inch balls and pretend they are a real person named wilson who needs to go everywhere with him. Still hold the chickens like they are the fluffiest and most snuggable creatures around because to him all animals are snuggable.
    Yes summer should be much easier, all i have to do is make sure i have a giant size box of color gold fish, his dirt bike and of course his precious chickens.
    I wont even think about next school year and the anxiety that comes with it for a blessed month or so.
    Thank you carrie for writing about your jack and letting the rest of us know we are not alone on this ride.

    Reply

  4. Kathy Hardison
    June 6, 2016 @ 2:25 pm

    Sometimes it’s too hard ~

    Reply

  5. Janet
    June 6, 2016 @ 3:37 pm

    Oh Carrie, your son is NOT standing still. He is just on a different timeline. I had to learn not to look at everything through my neurotypical filter. It did not happen over night. My child has come a long way. Jack seems to have come a long way! He speaks, bakes, he makes cheeseburgers, he makes playlists, tells jokes, and probably so much more. Try the new school, and if the hitting and what not continues (yup, my kiddo does that, too, when she is overwhelmed), then maybe, just maybe, it is not the right placement for him. Hitting is usually a sign of extreme stress. Please know that in public school, through the McKay scholarship, your son has the right to transfer to any public or private school of your choice. If he spent Oct. through Feb. of the previous school year in public school, then you should be able to transfer him wherever you want. Maybe he needs a public school that is considered an autism cluster school (lots of experience and other kiddos just like him and to whom he may be able to relate).

    We all want the best for our children. It just requires lots of detective work to figure out what that may be. It probably won’t be the trajectory that we expect when view the world through our neurotypical filters. However, with time, if we keep trying to imagine the world from our children’s perspectives, we will figure out what makes them happy, and then, I am sure, we all will move heaven and earth to make that happen.

    Here is a link that helped me put things into perspective in terms of developmental trajectory of an individual on the spectrum. Our children are developing, and they will get to where they need to be on their very own timeline.

    http://yesthattoo.blogspot.com/2016/03/autistic-development-its-thing.html?m=1

    Reply

  6. Susie
    June 7, 2016 @ 12:02 am

    Unbelievably spot on…. You are such a support and I am so grateful for you and all you share…

    Reply

  7. J Anderson (Grandmother)
    June 7, 2016 @ 12:42 pm

    Once again I share your pain and confusion on Jack’s future. My daughter whose son will be a senior next year has all those decisions to face regarding staying in school in the life skills program until he is 21 or graduate with his class. She will spend her summer with other Mothers facing the same problem. A program in her town to meet once or twice a month will try to fill in the blanks as to what takes place if she lets him graduate with his class (and he wants to).It must be so hard for all these children to try to understand both what lies ahead for them and why can’t they be like the other kids. Everyday my heart goes out to you and all the wonderful ways in which you have dealt with bringing Jack to where he is today. Please enjoy your summer and may God continue to give you all you need to move on through the next hurdle.
    God Bless.

    Reply

  8. adoberoseblog
    June 7, 2016 @ 3:17 pm

    Hi Carrie, I am proud of you and for you. I look forward to finding your blog in my email even though it brings back so many hard moments in our family’s life. You bless me with your humor and dignity in the world of different-ness. Our son, now 43 years old, was diagnosed schizophrenic after the army. BUT in the middle of his breakdown and eventual diagnosis, I kept remembering “things” that been wrong for him all through his life.

    Searching the web I realized (oh, so late) that my wonderful, confused, and lost son had always been Autistic on the Aspergers side of the spectrum. Drs would tell me he was a normal kid just going through normal boy issues he’d outgrow. He drooled till he was 6 but again I was told “when he gets in school and the kids tease him, he’ll be embarrassed and stop. He’s just lazy and doesn’t care”. !!!!! And so on and so on…I didn’t know there was SOMEONE out there who had better answers and it kills me to know how much he suffered. Help really was there, special, designed just for HIM, and us too! Too late.

    I began writing late at night when everyone was out for the count and MY mind just hovered, circled, and twisted about trying to make sense of my life. In re-reading my ramblings, I’d find myself smiling at the discovery that I really did have a sense of humor about our lonely lives of fear. Not that I could react with humor in the middle of daily situations, but in hindsight (even by just a day or a week). Writing taught me to laugh, it took so much pressure and just released it sometimes like a crazy balloon in flight!

    “Other” people ceased to be so scary, not even the monster hovering judges I perceived them to be. They were just ignorant. THEY needed teaching. The sting was gone.

    I want you to know Carrie that you are on the right track. I hope other Moms find you early in their walk with loving someone so “different” and yet so wonderful. If I could give any advice I’d say, “Let yourself laugh again. It’s OK”. In my brother’s words: “If I can’t laugh I have to cry. I’m tired of crying”.

    God bless you, your wonderful son, your family, and your readers! May the answers you need always only be a moment away. May you never feel alone.

    Reply

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