learning to navigate the world, j-bear style

Tag: mama bear (Page 2 of 2)

Gettin’ Real

It is one week til surgery for J and crissakes you would think I was sending him in to get bilateral hand transplants or something else intensive and crazy.

I’m not saying a tonsillectomy is nothing but we’re not talking open heart surgery here.

So why the hell is this such a subject of near panic for me right now?

This is my second entry about it. That should raise red flags, right? Mental state instable, get brain relaxer, stat … or something to that effect.

The way I grew up you always had to think two, three, twelve steps ahead in terms of trying to predict how things were going to go. This was a pure survival mechanism. If you couldn’t anticipate disasters before they happened the world turned into a very violent place for you so I became all about acting preventatively to stave off ill effects. It’s a trait that I still carry and a trait that while it makes me a very good customer service agent it makes me a horrible person to live with sometimes. I get so focused on crisis management that I fail to realize that I am planning for a crisis that is likely not about to come to pass.

This is what I am doing right now with J. 

I saw the weather forecast for the week and saw that it was going to be very, very hot going into the weekend and panicked. As New Englanders, our homes, particularly the older ones, are not prepared for hot weather. Now I am all “I have to make sure the portable AC works”, “All the fans have to be in the windows”, “The beds need extra sheets and maybe there should be extra sheets for the couch for if he’s sweaty”, “Maybe I should try to get him to drink a different liquid that’s not milk”… 

And on and on crazy brain went, running off the deep end.

I think talking to the nurse during the pre-op interview on Friday will help because I can ask all the questions I may want or need to. I can take out my crazy brain on this poor, unsuspecting soul and get a better understanding of what’s going to happen and more importantly what I can do for J that I am not already planning on doing. We can discuss the likelihood of him staying overnight, which his ENT said was a possibility, and I can ask that a particular anesthesiologist not be allowed near my son after the hell he caused during J’s birth. 

I think at some point before Sunday night I need time to just sit and breathe or I might be a total disaster come Monday and J needs me too much for that to be okay.

Stream of Consciousness

This one might be a little more meandering/disjointed than usual, if that is even possible.

I love my son. There’s no disputing that fact – if anyone attempted to do so, I would likely turn into an angry bull over it. My son is why I get up each morning and slog through even the worst of days. It’s as natural as breathing and as part of me as the hands that type this. It just is. 

There are days we are absolute misery to one another though and today, today was one of them.

It wasn’t his fault or my fault. The weather today was dismal, lashing and miserable rain that kept us trapped in a stuffy house except for one awful trip to Market Basket. Market Basket, I will rant about you another day. When we can’t get out and do something, or be comfortable enough in the house to be highly active, it makes for disaster around these parts. 

The culmination of our frustration with each other came when the little guy ran from the kitchen, sling-shot around the fireplace and barrelled at me full bore as I sit on the couch. Before I knew what was even coming I got a face full of his thousand pound solidly concrete head. The cracking sound off my cheekbone was terrifying but thankfully, nothing more than my sense of safety around my careening almost three year old was deeply injured. I’ll have a black and blue tomorrow but nothing stark or obvious. Just an ouch.

The moment he hit me, he started to laugh. He thought my cry in pain and shock was a game. My heart broke. How can I chastise him, scold him for laughing at my intense pain and upset when he genuinely has no idea?! He doesn’t feel pain like I do, for starters, and even though he’s been knocked down by larger kids a few times he’s never been in a situation of intentional hurt beyond needle sticks. He has intense emotional empathy but has no way to understand the messages that empathy sends him, so he reverts to his default – happy/silly. 

And there’s a 99.9% chance I am reading way too far into this. 

He doesn’t hurt intentionally. He has pushed another child exactly twice and each time, he is firmly told we do not place our hands on other people like that. His body gets ahead of his control and that’s generally when someone (usually me) gets hurt. 

I’ll talk to his therapists of course about how to deal with it, it just for now adds to the layers of sad I’m struggling with. 

The rest of the day he was even more clingy, which is the last thing I wanted to be because of the headache and having been clung to all day. He wouldn’t even let me go to the bathroom without trying to be on my lap. I feel like a terrible mother but sometimes, I just can’t deal.

Add to that the times it feels like all my worth is bound up in how many hours worked can be squeezed out of me and how I feel like it is believed I never carry my weight and that leads you to kind of the dark place I am in. 

I keep telling myself tomorrow will be better but geez. If someone upstairs is listening, a little good news to come my way would be a treat right now. 

IEP Warfare: Shots across the Bow

Let me begin this post with a shout out to parents of children with IEPs across this great land:

You’re amazing. I don’t know how you’ve done this for years. For serious. 

Now, here’s what leads me to that shout out. Hunker down, it may be a long one.

J will transition to the public school system following his birthday in June. The recommendations laid out by the Center for Special Needs at Floating Hospital are pretty strict and pretty clear. Full year schooling. Extremely low teacher student ratio. ABA, Occupational and Speech therapies. Chances for interacting with larger, neurotypical peer groups. Before this process ever began, we had in hand current evaluations for J: OT evaluation, Center for Special Needs evaluation (where his autism diagnosis was refined and his Sensory Processing and Expressive/Receptive language disorder diagnoses were added) and within a few weeks a thorough Speech evaluation was added. This mom, she is prepared in terms of knowing what her son needs and being on top of being informed about his condition. Every report gets scanned into the computer, saved to Google Docs, and printed for all of his therapists to have on hand as well as the schools.

Our local schools had a meeting with us early in March to discuss how this process would play out. Their director of special education for preschool through fourth grade sat in the living room here and allowed us to question her. I immediately expressed concerns about my son being evaluated too much – that he already had a lot of current evaluations and every time we did one, it was no picnic for him. She said she understood and would read through all of the reports provided for her and set up something called an arena style evaluation. This means that several disciplines would meet with us and evaluate J at one time so as to prevent just what I was concerned about. It would be a one shot stop and while difficult, once it was done it would be done. The only separate thing would be to observe him at his weekly playgroup.

Great, I thought! This wouldn’t be so bad! I was feeling a little more optimistic about the process ahead of us.

And then it all fell apart.

A letter came stating that they wanted a separate speech evaluation, a separate occupational therapy evaluation and they wanted the observation. I was stunned. This was nothing like what was described, yet my hands were tied. We only have a finite amount of time to get this all done after all. I reluctantly consented to the multiple evaluations and waited to hear back from the schools. 

The occupational therapist and the speech therapist were prompt in reaching me and the appointments were made easily. Both of these ladies were extremely professional, kind, and J took warmly to them even though he struggled mightily at each evaluation. 

No one amidst this has ever talked to me about going to playgroup. This group takes place once a week and hey, there’s only so many of them left before we need this IEP to be drawn up and consented to. I never heard a peep. I walked into J’s speech evaluation however and was blindsided by the school psychologist and the BCBA who decided it was time to grill me or something. I have no idea why I had to answer all the questions I did answer. They pretty much ran me through every autism checklist I have already gone through with various professionals before. It sincerely feels as though they were trying to get me to answer somehow differently, like J doesn’t actually have autism and his diagnosis is full of baloney.

Yeah, cause what this kid goes through every day is a freakin’ joke. 

During this meeting and questioning I did mention, quite clearly, that that very evening J had his sleep study scheduled and we were not looking forward to it. 

… So when the school psychologist and BCBA showed up at playgroup the following day, why were they shocked that J wasn’t there? And furthermore, why did I get the nastiest voicemail accusing me of keeping J away from group on purpose (wtf is that?) and telling me they were going to be there the 9th of May and I had best let them know in advance if he’s not going to be there.

What. I can’t even with these people.

The schools informed early intervention, the people who run the group, that they were coming. Not me, his mother, who keeps his calendar and schedule pretty thoroughly. If they had even thought to give me a shout they’d have known he would not be there that day due to the study the night before. 

Now I am engaged in a back and forth of passive aggressive email replies and voice mails. 

This is what makes me the most angry: In just about two short months I have to trust these people with the welfare of my son during his school day. I have to believe his needs will be met and he will be well cared for. These are people who cannot even get communication correct with me, and I have to trust them with his every need for several hours a day? I know these aren’t the classroom teachers but when the people running the show behave this poorly, it reflects on all involved. If they have such little respect for me, his mother, how can I believe they will have respect for him and his classmates? How can I believe they will teach these children to respect others and to expect to be respected in and of themselves?

My level of disgust runs so high right now that I just wrote this long entry to get some of it out. My son does need a lot of support going in to school. He deserves this support. If this means I am going to have to fight to get it, well, so be it. A fight it shall be.

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