Friday, January 7, 2011

A Special Grandma for Special Needs

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Ever since Noah came home from the ER, he's been suffering from on and off again moments of hysterics. Things will set him off that never did before, he's frightened of things he never had been. Between Chris and I we spent over two hours trying to calm and soothe him last night to no avail. He just cried and cried super hard no matter what we did. Listening to the radio didn't help, being held in a different way, being cuddled, we tried both beds his and ours, nothing. We weren't sure if he was sick, he didn't have a fever. But he can't tell me why he's crying and it's distressing. He had a happy day, it was perfect, the first one in days where I didn't have a distraught Noah. Laughed and giggled and was basically himself. We made it to pool therapy and he did great, loved it, and he looked like he was relaxed and enjoying how his body felt. He took a decent nap. Ate great all day. I went over the checklist a million times as to where it went wrong for him at the end of the day.

So as a last resort what do I do? I call my mother because if I don't have the answers surely she will! The second time in weeks I've woken her out of bed, and she doesn't even hesitate she comes right over to help. At 11pm at night here is grandma trying to help her little Noah. She finally is able to comfort him and they both find a spot on the floor and she spends the entire night sleeping and cuddling with him, even though she has to go to work and face a tremendously demanding workload the next day. It takes a really special grandma to love Noah in the way that she does. It's just amazing. I don't know too many people that would love him like she does. She doesn't see a broken little boy, she just sees a soul that she's going to help make his way. Her patience and love for him is incredible. She knows his limitations, how fragile he is, how he needs to eat, what we have to do to make sure he stays healthy. I tried to even get into a program that would pay her for all her efforts in helping us care for Noah and his challenges. But the State said since Noah didn't have a "short life expectancy" that we didn't qualify for the Medicaid Waiver Program. (Just one of many program and service denials we've received). So all I have for now is to pay her dearly in our love and thanks.

We never did figure out what was upsetting Noah. He's fine and chipper this morning like no big deal. Last night he grew upset because we touched is prayer bear and made it recite its nightly song, but usually he loves that bear, then he seen Chris on the phone and that upset him more. He doesn't mind if the phone rings but he doesn't want to actually see you on the phone or know you're having a conversation with someone. Maybe in his mind he thinks we're calling 911 again I don't really know. He always was sensitive with sensory issues, but never this bad until after that emergency room visit.

And I worry as we have some medical appointments scheduled this month, and I really am concerned about his well-being. I'm trying to get him to move forwards, not backwards. I've asked his therapists for advice, and they've been great offering me some sensory techniques to try with dry washcloths, essential oils that might be calming that I'll go hunt this weekend. But the problem with sensory things is they don't go away overnight. This could take me a really long time to get Noah over what is scaring him into these episodes. Chris and I feel that something scares him into these hysterical episodes where you can't calm him down. And I'm not about to drug Noah just because we have some sensory problems and fear issues we need to work on. I will find a organic way of getting him through this. Granted it's hard on Chris and I, but God never told us this was going to be easy. We just have to keep trying until he understands all is safe and well and wonderful.

And at the same time while Noah's auditory and visual sensory issues seem to be on high alert, his sensory issues with touch are much improved. He actually held a swim stick in one hand for a minute and 15 seconds. Not hardly impressive I know in the world of typical children at the age of two, but highly impressive for a Noah that can't even hold a spoon, bottle or feed himself in anyway. He's also allowing me to freely brush his teeth without complaint and gag. Huge in our world or sensory problems. You had to trade one improvement and lose ground on another. Special needs is just challenging. It's truly hard to explain it unless you're living it. I'm so glad I'm not alone. That's been such a comforting part of the last two years. You really do need support to get through some of your days, you do need prayers, you do need those hugs from friends, you do need love from the family that will be there. It's like the energy you feed on to keep going. And even though some like us find there many not be many in their corner, all it takes is just one person that cares. Just one - and you can do this.


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.