J-Bear and Me

learning to navigate the world, j-bear style

Tag: school

Preschool 2014-2015

Today was J’s first day of his second year of preschool. We had a visit to his classroom yesterday as he is with his same friends and same staff, but in a different building this year and initially he resisted. Full scale yelling “no”, threatening to melt down but he calmed upon approach of the building. I think realizing it was not the awful summer program he was returning to helped.

Fur seal pups playing in an enclosure while a little boy looks on

Watching the fur seal babies play.

We celebrated yesterday with a trip to the New England Aquarium as mentioned before. It was a fail overall, which still bugs me. I did reach out to them and hope to be able to talk to senior staff there soon about potential things to be done to make the aquarium more accessible to people with special needs like J’s.

Anyway back to the story at hand. Ximena, J’s runner through the I Run 4 group, sent him a fantastic Superman t-shirt and I realized when we opened it that this had to be J’s first day of school shirt. We got dressed, washed up, even brushed teeth this morning and marched off to school without a single struggle this morning. He celebrated the new year with munchkins for breakfast, of course. He had no issue going into his classroom, setting his things in his cubby and getting to work. This is such a departure from last year at this time!

This year he will do two days a week, one hour each time, in the general preschool classroom. I am nervous about this but also excited. I think he has grown so many skills in the past year and it will be interesting to see how he responds when this becomes a part of his routine. Last year, a visit to that classroom would immediately shut him down and send him seeking a place to burrow away. I do not think he would do the same now but as ever, he always surprises me. The dog will also help to boost his confidence, which will help in ways I bet we cannot even yet measure.

Here is Mr. Preschool 2014-2015:

little boy in a backpack

Before school. Pardon the weird haze at the top, my phone case is a jerk.

superafterschool_marked

Little boy after school with his buds! He made that hat. It has apple cut outs that the kids glued on them. Adorable!

My Sunbeam

May God grant you always a sunbeam to warm you  ~ Irish blessing

This post should be easy to write and yet is not. There is so much emotion that comes with discussing the past year of my son’s life. I do not know where to start, so why don’t we go back to the beginning. Birthdays are great for that.

J stormed into the world at 4:58pm after I had labored for days then struggled against what I know now to have been PTSD-related panic. My first memory of him is of him laying against my chest, clinging to my finger with his tiny fist as the world kind of went crazy around us. I promised him then and there we had one another and everything would be alright, no matter what.

It feels like we’ve been holding hands ever since.

When your child is born it’s like a blind date: You might know the gender, maybe even have a few hints about the person you’re about to meet but most is left to chance and fate. I knew I’d likely be having a little boy, and that he was going to be a chunky monkey but that was about it. The little boy I got didn’t look anything like any baby I might have ever imagined, but he was exactly who I was supposed to meet. Dark hair, grey eyes, chubby cheeks and a cheeky demeanor… He was perfect. He is perfect.

This past year I have watched J graduate from the care of Early Intervention, leaving the loving guidance of Virginia, Nicole, Jess, Catherine, Loretta, Dana and Nicole HB to move on to preschool. He took those first steps warily, fresh off having his tonsils and adenoids removed, but once he gained momentum he never looked back. He had everyone who loved him to guide him plus a whole new group of people who came to love him too. His therapists at Kioko remained a reassuring constant to us too, something that was instrumental to making this transition possible.

He broke his arm in late July and we learned a lot of good lessons, like AquaCasts are amazing and mama was wise to make sure Santa brought a trampoline to mitigate a little boy’s need for jumping and falling.

When school started in September I was nervous. The schedule is rigorous for him. 4 days of full day school, 1 half day of school, plus two private therapy sessions… When you’re a little mite, that’s a big schedule. He adapted and not only adapted but thrived under the guidance of amazing classroom staff. The foothold that his EI team had gained in terms of language allowed J to blow past his stated goals for the year in mere months! He uses speech simply but effectively. He follows simple instructions. He understands emotions. He identifies some needs and wants. He recognizes needs and wants in his peers and happily plays with other children.

That last phrase is huge. J had only fleeting interest in peers a year ago. Now, at the end of the day, he says bye to all his friends in class and they say bye to him. I get teary eyed every time it happens because there is little more beautiful to me. He has friends, and these little kids are amazing. I have watched them all grow so much this year and I am dopey but I am as proud of them as I am of J.

People pat me on the back and say “you did this”… but I didn’t. I drive him around. I make sure he gets where he needs to be and has the tools he needs. I help him, yes, but all this accomplishment is thanks to the support of remarkable professionals and his own determined will.

If the year between his third and fourth birthdays has been huge then the year between this birthday and the next is going to be borderline overwhelming. The strides he has made now will only continue, and hopefully expand further, as his dog comes home. It is you, internet, along with all our friends and family, that we have to thank for that blessing. You’ve helped to change his life even more, and all for the better.

He walks under the warmth of a sunbeam every day of his life, this boy. He has some tremendous guardian angels and tremendous family here around him. I am so amazed that he is my son and grateful every day for the blessing he is even when I am covered in snot and half deaf from a bad day. I am grateful for him exactly as he is and giddy to see exactly who he will become. He was born my sunshine boy with the storm cloud eyes and he will always be that boy, deep down inside, even when he’s 6’3 and able to bench press me.

babyfluffs

aww, baby fluffyhair

Happy birthday, baby boy.

Second Guessing

I am the jumpy sort that second guesses everything I believe or do again and again. I overthink everything around me and generally wallow in the “wonder” that is hypervigilance most every moment of every day.

This should come as no shock to anyone who has to deal with me in certain capacities. I will overthink my actions, my son’s actions, behaviors, every little thing. Other things I don’t seem to think at all about and there’s never a wise balance between the two.

Anyway, this week we were visited by one of the most amazing people we’ve met since this journey started. She dropped by, in her free time, to check in on J and to discuss some troubles he’s been having. Her analysis was spot on I feel in a lot of ways and she cut through a lot of my worrying and overthinking efficiently and compassionately. She never diminished my concerns at all, or my struggles but instead took them in and responded to them with compassion and clarity – two things I sorely needed.

But with all the things we struggle with, we still have moments of pure wonder. Today, my son did something that I’ve never seen him do. I asked him to make his teddy bear dance… And he did. I asked him to make his teddy bear stand on his head… and he did. I asked him if his teddy bear could turn around… and he helped teddy turn around.

Now a lot of people would find me daft to learn this made me cry, but this combined with everything else just shines such a light on how hard he’s been working and how very, very much he has been absorbing and learning and taking to heart. His language skills have taken off, especially his receptive language though his expressive skills are getting there too. I have conversations with my son. I don’t care if no one else follows or gets them, we do and every day more people are understanding him too. He greets strangers, he engages people and tries in his own way to draw them into his world, even if that sometimes means he pushes them in an attempt to lure them into a game of chase.

I am just overwhelmed, and yet I second guess every change because that is just what I do. However, when he turns around after a week of rough times and shows that not for a moment did he ever close off learning and growing. He’s working so hard and I cannot fully grasp the effort he’s putting into every day life on top of schooling. This of course isn’t an excuse for bad behavior, but it’s an explanation for the times it comes when he is just spent. Now to find the balance between helping him understand appropriate ways to express being overwhelmed or tired and disciplining when he is just acting out to act out.

And to not second guessing my intuition and understanding on which is which. That might be the hardest lesson of all.

The War that Wasn’t.

I have a lot to write about J’s surgery and some other stuff but my mind can’t be there right now. Short story: He’s home, and we’re struggling, but these days (5-7 days post surgery) are supposed to be the worst of his recovery and then he should turn the corner. We’ll see. More on that in another entry at some point.

Wednesday was the meeting with the local schools to set up J’s placement and IEP for the public schools. After the hell it feels we’ve gone through with them so far, I was pessimistic. Lies have been told, miscommunication has been rampant… It’s not been pretty to get to this point.

I am shocked and pleased to say that none of it came to that.

J’s current team members spoke glowingly of him, acknowledging his weaknesses and showcasing his strengths beautifully. The school’s professionals for speech and occupational therapy had a good handle on his needs though the current professionals he deals with rounded out their views a little more I think. The BCBA (behavioral analysis specialist) for the schools had a pretty good view on him too. 

And, without fighting, he’s been offered pretty much all I wanted for him. He will go to school the full year, he will have a substantially separate classroom, his class will have a low teacher-student ratio and he’ll have the services he needs to succeed. He will also have the chance to engage in activities with the larger preschool class as he is ready to do so, so he’ll have time with his neuro-typical peers. This last bit made me extra happy because his best buddy M is in that preschool class and their friend J from playgroup might join them as well. There might be a point this fall where 4 children from Thursday morning Sensory Group are all together again in the preschool… That would be awesome, for all of them.

This isn’t saying that all the children won’t be awesome – they’re kids, it’s they’re job to generally be so – but it will be nice for all 4 of them to potentially have familiar friendly faces to go through their first days of school with.

I now await the paperwork and the “official” IEP letter but all in all, I think things are turning out okay in that regard. I am anxious to see how he adapts to the environment but the summer program is just a half day 4 days a week instead of full day 4 days and half day 1 day of the regular school year. He’ll have time to slowly ramp up to what can be a long day for the little ones. 

Should his recovery continue to go apace, which I have no reason to doubt it will provided he keeps hydrated and resting right now, he’ll start school July 8th. I’m so not ready but I know it will be the best for him. His teacher for the fall will not teach him this summer but other staff that works in the regular school classroom will be there. His teacher for the fall has also invited us and his therapist to come by this Wedneday to hopefully view the classroom and gather pictures to have on file to get him ready for when school begins in September-ish.

So, for now, hopefully the case is closed on the IEP for 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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