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To New Starts

Well, it’s October. The dust is finally settling. Aspie is in Kindergarten. Wheezie is in preshool. It was surreal.

It was the beginning of a new era for me – giving up a whole lotta control to the public school for A, and trusting that my little bubble boy W would thrive in this preschool. I was so worried and guilty that I had not looked at other preschools for W – that he was just going there because A did. But it is absolutely perfect for him. He loves it. They love him. He is showered with love and nurtured to his fullest potential. He is not treated differently despite his physical disability. He mostly keeps up with the others physically, but TOWERS over them cognitively. I have another smarty-pants on my hands. I know every mama says that, but what the hell, I’m saying it too!

Aspie is doing phenomenal. Better than anyone could have ever anticipated. My family and I have so much pride in him, it just gushes out of us. He’s turned into such a good, good person. He had a few hiccups in the beginning of school, but those seemed to have all worked themselves out. He acquired a nasty case of Giardia sometime over the summer, so we were battling that the first month of school. He was medicated twice for it and it seems to have resolved. We retest again in a few weeks. Nothing like a kid with a wonky gut getting a parasite….. it was epic, let me just tell ya…..

Wheezie’s asthma has been very controlled. It’s definitely been active since we’ve had so much rain and it is just WET here constantly. However, he did get two colds already this season that have come and gone and they were NORMAL. Like, normal people colds! I’ve never seen him get one of those before! He was also casted for orthotic braces last week. That was a whole slew of emotions that I had to get through, but now I’m realizing that it’s what we have to do if we want to avoid hip problems down the line. He’s such a mensch. Such a good boy. He amazes everyone every day with his joy and beauty. Now we’re also waiting on the Intermediate Unit to let us know whether or not he is going to continue to get services…… I just can’t understand how a child with hemiplegia can be denied services….. but we shall see….

I went back to work two mornings a week while Wheeze is in preschool. I have a lot of mixed emotions about that too. It’s the same job I’ve been doing for the past five years, I just decided I get more done in the office. It’s perfect because my office is five minutes away and they are still extremely flexible with me. I’m just wanting something….. more important. We’ll see how it pans out.


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Stop, rewind….. and PLAY!

That is my life. Life has been extremely full lately, in mostly good ways. One of the good things is that J has started a new sports class at our local Y, with much apprehension on my part…. and you know what? He LOVES it. He is absolutely exactly like the other kids. He has so much fun. He shows his strengths in every game that they play, and he WANTS to go! I was blown away. I think I need to follow his lead more often…

E has made amazing strides with his walking issues in PT. He is definitely finding ways to compensate for his low tone and is really strengthening all other parts of his body. He is happy and active, and currently not sick. He did go through a wicked bout of respiratory crap in which he ended up on orapred, and then a week later came down with a sinus infection and ended up on antibiotics. He’s doing great now though.

Both boys were struggling with their weight over the past few months. J all of the sudden showed symptoms of the SAME enterocolitis to dairy that E has. It was as simple as putting him on E’s diet, and not only has he gained back what he lost, but he has gained even more! He is eating so many new foods and really enjoying his food. E also rebounded from his three week long flare and gained over what he had lost as well. He has been cooking every single meal with me and it’s really motivating him to try new things. He eats much better when J is not around, so I try to actually do two separate dinners – me and E and J and dad. The dynamic just works for some reason.

So right now I’m pouring myself into research on the Gluten Free Casein Free diet. Both of my boys are already Casein free and have conditions that can be exacerbated by inflammatory foods such as Casein. So far they have taken beautifully to some foods I have introduced, and I am benefiting from it as well. So there’s my work in progress.

I’ll be back soon with updates.

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Remember when

You were a young adult, you stayed up way too late for whatever reason, and so you just called out of work the next day? I wish I could call out of my “work” tomorrow….

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Jonah’s having a really challenging day

It’s been going between bouts of crying, screaming and rages. All over the Wii. I felt that an “episode” was coming sometime around mid-last week. I can handle this. I had a LONG good break. I just need to keep my cool and know that this too shall pass.

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Ha, oh yeah!

We had our CHoP appointment! Here’s the concensus:

Asperger’s Syndrome (duh!)
Lack of Coordination

And so we move on…..

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I haven’t had trouble getting to sleep in a long time. Just too much going on right now. I’m feeling overwhelmed. Maybe I’ll blog about it soon….

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Geoff calls these moments of clarity that I have “epiphanies.” He says I have them a lot. He says I also use that word a lot. That, and proposition.

But I had one today. All it took was Geoff saying to me, “Ali, nothing will ever be easy with Jonah. Nothing.” That was all. And that short sentence just pushed me into a downward spiral of worries. For his future. For my mental health. For his brother. For my marriage.

Jonah sees an array of specialists. Urology is the only one we’ve retired. Neurology. Developmental Pediatrics. Behavioral Psychologist. Occupational Therapist. Now we’ve had to add Feeding Therapist to the mix, and I’m afraid that this just may put us over the edge.

My whole family is feeling my woes. I sat with Eli today in music class, which is usually our absolute favorite time together. He was a mess. I was a mess. It just wasn’t working for us today. How can I expect his tiny little mind to understand what I go through? How can I expect him to look at me and say, “It’ll all be ok, mama.” But I do look to him for that. I look to him when I say, “No no, don’t touch,” and he doesn’t touch. I say, “No hitting, say sorry,” and he says sorry and doesn’t hit again. It amazes me because I’ve never experienced a child just complying with simple discipline. But he does, and it settles me each and every time.

I just can’t continue to look at my kids this way anymore. I can’t look at Jonah as my problem and Eli as my solution. I need to look at them as my children who make me whole. I need to know that Jonah will be ok. Eli will be ok. I will be ok. I know in my heart this is true…. I just need to get there.

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