Some of our boy is back, now that we’ve got Jonah taking the original dose of Risperdal again, for fear of attempting yet another med or dosage that’ll throw him all out of whack. It’s a strange thing to try this and that, feeling like you’re guinea-pigging your child, especially since you used to think you were anti-meds. Desperation will bring you places you thought you’d never see.
After work I often go the house, and Andy and Jonah and I will take a ride to go see train, which Jonah enjoys again and seems to get excited about, but if a train takes too long to come along or we take a right when he wanted to go left, we pay for it in kicks and thrown shoes, screams and thrashing and incomprehensible demands. It’s a trade off; we can have some of his personality and smiles back but the aggressions still aren’t mitigated very well.
But ah, the smiles…
They’re sweet, the smiles, and damn it he’s in there, the kid who swims and climbs and pours wood chips down the slide. It’s great when the cloud of aggression parts and you see him smiling, playing, singing, joyful. Even just calm, eating or watching train-on-TV.
He’s my precious little boy, and I want to snatch him up and plant kisses all over him, have him open his arms wide and hug me, say I love you, mama — hold him close, snuggle into him on the couch, sniff deep into his hair and simply absorb the presence of him.
Springbrook hasn’t contacted us yet, so we’re waiting. From Thursday through Sunday I’ve got a lot to do during long days at our annual spring convention at work, so I’ll be back after that’s all over. It’s fun but exhausting, and I’m presenting a session this year so I’m a little bit nervous.
Please send Andy some “you can do it” energy, if you will. My mom will try to help him, or at least feed both he and Jonah, and my cousin D will hopefully help too – but trust me it won’t be an easy weekend for him and I hope Jonah doesn’t give him a hard time.
Once in a while Andy’s got to catch a break, right?
The Never Normal 
Andy, you are my hero and, I’ll bet anything, the hero of everyone who reads Amy’s blog. You are a wonderful dad to Jonah. You have always been a wonderful dad to Jonah. And you will always be a wonderful dad to Jonah–during the next four days when Amy won’t be able to contribute much–and during the time when Jonah lives at Springbrook or Tradewinds. Hang in there, Andy, help is on the way! My love is with you now and always.
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Hi Amy.
I have been waiting with bated breath for your post. You probably don’t recognize my name, but I saw you at Vapor with KP last week and we talked briefly. (You told me you got proofed, you punk! LOL!) I’ve seen you a few other times too, most notably when we all had brunch at Peaches and you so generously treated my sister and I and KP and H. You have such a gentle and kind nature about you and I have been totally absorbed with your blog. I’ve been up late every night this past week going back to the beginning of your journey with your precious Jonah and that wonderful man, Andy. KP told me about your blog b/c I was asking her some questions about you and how you’ve been since we saw you last at Peaches and she suggested I read your blog to find out what’s been going on. I have to tell you that you are an amazingly gifted writer. You have such an effective way to communicate to the reader your emotions. I’ve been laughing and crying and literally my heart was aching through some of these brutally honest and poignant posts that you are so generous to share with your readers.
I have my own story with my son Roman who is 9 now, having been born on 2/28/02, just days before Jonah, and having been diagnosed with autism around the same time as Jonah too. (It is such a small world sometimes.) He is quite different from Jonah, as all spectrum kids are, and we had a very good experience with a program we chose when he was just 2 and a half. It was an ABA program. He responded very well to that method but it was a torturous decision to send him to school for five and a half hours a day at that age! My heart ached! I just about lived at the school the first two weeks b/c I was sure he would need me and need to leave but he loved it and I ended up loving it there too. The teachers and staff were amazing with him and with all of the kids. These people have a true gift and they are saints. I don’t know how they do what they do but will be forever in their debt for everything they did for Roman.
Roman did not have any behaviors (well, he did but they were not aggressive, more like bad habits he would adopt and then they would help dispose of but it seemed an endless cycle for a while) and that made it easier to put him into the program, although there were times where they physically had to show him how to do things (or not do) and it was a little unsettling. But he was responding and we couldn’t deny it. We followed through at home and luckily he responded as well at home. At first, I was worried he’d be like a robot programmed how to act like a little boy, and for a while, that’s what he was, but over time, he adapted to the structured life they were teaching and seemed to integrate it into who he was. The robotic nature subsided after the first year and his true personality came out.
He is in mainstream school now and still needs structure. He craves it. He has gone from having breakdowns when the day changes to slowly being able to deal with it but it is tricky at times. He does have a TA but she is not only there for him and we have been weaning her time with him so that he does not use her as a crutch b/c believe me, he will! He is a different type of kid and when he was little, it was very apparent. Now, it is not as noticeable although there are times where it comes out and other kids and parents will seem confused or ask me “Why does Roman do that?” I just say “That is Roman. That is who he is.” Honestly, it is what I love most about him. He can be so “quirky” but he is so awesome! He will probably always be mildly on the spectrum but b/c he is so aware of his tendencies to act a certain way or do a certain type of thing that he shouldn’t do, he has learned coping strategies and deals with them very well. This year, he started excusing himself from the classroom (which the teacher allows) so that he can collect himself if he feels himself getting anxious or upset and then he will return to the setting with a regained composure. Amazing progress for him! He gets it. And his friends seem to “get” him, which is a blessing. And the teachers all love him. He is an extremely lovable and huggable boy and I feel incredibly blessed that he can tell me he loves me a hundred times a day. When I see the pics of Jonah with that huge smile, it makes me smile b/c I can see that amazing little lovable, huggable, kissable boy and that is such a blessing for you!
I wanted to share some of my story with you. I know it is much different from what you have gone through and continue to go through with Jonah. I just wanted you to know that I think you are an amazing advocate for Jonah and I do believe you could effect changes in this very broken system. It is broken on so many levels. Don’t give up hope that you can make changes b/c I believe you can do anything you put your mind to. Look what you’ve done all these years with Andy. You are strong and brave and courageous and loving and nurturing. This is an extreme challenge if ever there was one and you haven’t walked away from it. You are there in the trenches. You won’t give up b/c that isn’t who you are. You are a mother who will do anything for her son and that is beautiful and amazing and I can’t think of anything better to be. 🙂
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I only know you through Amy’s blog Andy but I agree with Channah, you are doing a brilliant job. I certainly wish you the strength to carry on and the wisdom to accept all the help you need. Even heros need to take care of themselves! 🙂 Debbie
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Amy,
I too have been waiting for your latest post… I love the sensitivity, and openness in your writing. The sweetness and the other side of sweet… are all so beautifully scribed. If the online world can bolster your already strength, and offer a virtual shoulder, then perhaps we add to your support system in a more than imaginary we-are-with-you kind of way…
My thoughts are with you, Andy, and your sweet boy. I find myself wondering about your journey when I am writing my posts each day. I will send positive thoughts Andy’s way- but you… you ENJOY your break!
Hugs
Leah
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I know how tough med changes can be Amy. My son has been through many! I hope everything evens out for Jonah. Best wishes to you all. Hang in there!
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Soooooo…. Wondering???
How was your convention??
How did the boys do???
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