J-Bear and Me

learning to navigate the world, j-bear style

Tag: IEP

This and That

I am really good at these posts that have a lot of random bits but not enough of each bit for a real meaty entry. Buckle up and hang on for the ride!

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J has been fighting within himself for a couple of weeks now.  It is hard for me to explain what is going on. People in general, no matter how they are wired, can often encounter this rift between what they are feeling and their ability to express said feeling. It seems right now that for J, that rift is more of a large, deep and tumultuous gulf. It is understandably upsetting and frustrating to feel things that you want to express and let out but you do not know how to do so. This often leads to outbursts, to acting out, to just him not being himself.

Frankly I cannot blame him. I’d be equally inconsolable if I felt lost in my own skin. I just don’t know how to reach him in these moments.

I sit, patiently waiting. I set boundaries and make my expectations as clear as I can. I get frustrated, too. I get upset. I’ve broken down and cried once with him in my arms. It’s not pretty, it’s not perfect, it’s not fun.

A lot seems to circle back to grief. Loss is becoming real to him. J’s way is to slowly come to a full realization of an abstract, difficult concept. He’s always observing, thinking and putting pieces together but those abstract emotional things are plain hard for a concrete, linear thinker. He’s realizing that there can be massive upheaval. He is realizing that his beloved girl was forever taken from him. He cries for her regularly and grows possessive of his precious stuffies.

No matter how long you saw this coming it still shocks the system and weighs down the heart.

We have light now, though. We will get through this.

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Who knew light could arrive on four prancing feet and covered in the softest, curliest fur?

J and I volunteered at APAW last week and for the first time in months, we both were light and free. J was so proud to have purpose. I hold back tears typing this because I had not seen that centered boy since June. He listened well to Jillian, APAW’s caring leader, and greeted the volunteers and their dogs amiably as well as some clients. He beamed over kisses doled out by sweet Empathy, a poodle in training, and chatted about the different dogs the whole drive home.

The class made it easy to realize that no matter how long our wait for his perfect partner is, it will be worth it. We are with people who care for him and his best interests now. What his needs are matter first and foremost when it comes to making a great match for him. There can be no deadline set for this. An arbitrary date will not produce perfection, it will merely limit prospects and possibilities. Would we rather a partner sooner over later? Of course we would. I would be lying to say bringing home a puppy tomorrow wouldn’t put me over the moon… But I am realistic. We engaged APAW because they make it their business to be subject matter experts in what they do. They have welcomed us into their fold and let us help in any way we are able, so the love we have ached over carrying since Brookie was snatched away will not go to naught. It will be shared with all these lovely poodles we meet and we can happily watch them on their journeys.

Do I wonder sometimes if a pup I meet will be J’s one day? I’d be lying to say I didn’t, but it is easier to immediately think “wow, they are sure going to make someone so happy”… Because they are, no matter what their role. Someday, it’ll be J’s turn and we’ll be okay until that day comes.

Puppy kisses help the time pass a little faster, though. I cannot complain about that!

 

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Those of you who have experienced life with IEPs for your children or as an educator know that every 3 years, re-evaluation must occur. J is in the midst of that right now and let me tell you,  I am nervous. It came as a great relief to learn that his beloved preschool teacher is doing much of the evaluating for him, so he is agreeable and trusts her. I know how much J has grown and how much he’s gained. He is so smart and quick, it’s just always nerve-wracking to see what people put down on paper to attempt and quantify your child. It’s not hard to see where his weaknesses are but here’s hoping that his strengths are seen and celebrated, too.

Far from the Tree

The IEP meeting for next year’s services, etc. was held this past Wednesday.

To say J’s progress has been brilliant feels like an understatement. He has done fantastic in his first year of school, meeting milestones and exceeding expectations like it were his job to do so. I could not be more proud of him. The plan for next year is solid and I will write more about it at a later time as we’re in a bit of a tiff with a member of the team. Good times, right?

Anyways, it always cracks me up when his teachers or therapists bring up that he hates doing art projects. When I was his age, that was my main method of communication. I drew, I painted, I colored… it was where I wanted to be and where I felt safe. You could leave me alone in a room with art supplies and I would be content for hours. I was even good at it, too.

The being good at it came back to bite me. Parents, let me warn you gently: If your child shows aptitude in something but not passion, please leave it lay. I became a trained dog it felt like when it came to art and now I have all these skills I hate to use because it just reminds me of being forced to act on command and to the demands of others rather than where my own style or wish wanted to take me.

Back to J though, he could not be further from the tree I guess. He has such talent in terms of movement when he’s willing to trust himself and is turning into a gifted mimic. He has great strength and agility as well as tremendous, overwhelming charm. It is amazing how unique he is and how very, very different from the trees he fell from he seems.

Got to stop writing, he’s playing Cut the Rope 2 and trying to nom my arm off every time the little monster eats the candy.

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 Update and Miscellany

Yesterday the public schools graced us with their presence while J was at playgroup.This after a few curt exchanges in the weeks prior. I was barely greeted by them (really, guys?) and they spent maybe 30 minutes in total observing what happened to be a very chaotic group day. Group always has a little bit of chaos to it, that’s what happens when you get that many 2-3 year olds in a room, and yesterday just kind of highlighted that fact. 

I’ve said it before and I’ll say it again: His playgroup is about the most awesome I could have ever wished for. The children have all been absolutely amazing and their parents have all been wonderful. I am seriously tempted not to let J turn 3 so we can stay with them forever.

Anyway, that’s where we stand with the schools. I am now awaiting the date for his IEP meeting and am terribly convinced that this meeting will be a huge war. I have sadly no trust in the school’s staff to do what is right by my son after some of the behavior I’ve seen and while I am willing to be flexible in some regards, I refuse to see my child short changed because the schools want something easy or because they want to use a cookie cutter method on a child that simply cannot and will not work for.

We’ll see.

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We have an appointment with the ENT this morning for the results of his sleep study and a discussion about how to proceed in regards to his tonsils. His primary care doctor armed us several weeks ago with a prescription for liquid zofran, which helps curb his ability to vomit, but the gagging is assuredly still there. I am curious to see what the ENT has to say and see if his apnea is neurological or merely one of several physical side effects of having tonsils the size of boulders.

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This is a perfect snapshot of a day in my life with J – we were driving to group yesterday and he was chattering in minion in the back seat as we were turning onto the street that leads to the early intervention center. Amidst his rambling, I started to hear oinking sounds. He’s got the pig noise down pat thanks to Peppa Pig. So, like any good mother, I oinked back.

And he oinked back. 

And I oinked back

And this went on all the into the parking lot at the center. 

He sure doesn’t talk much but when we do have “conversations”, they’re hilarious.

Oink oink oink.

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.

Rambling Weather

Someone forgot to give Mother Nature the memo on spring. I am not nearly as irked as it feels most of the rest of the world is on this count, for I am not one for warm weather for too long, but all in all it feels weird to be at Fenway Park for baseball when it feels like hockey weather.

Despite having regretfully left my position at Fenway for this season I did work a couple games this week and will work one upcoming game. I love the place. I’m excited to be attending as a fan later this month for Autism Speaks night. It’ll be J’s first actual game as a fan despite all his time spent within those hallowed walls. He has his own ticket and will be Mister Big Man, marching about… wearing a harness for his own safety, of course.

Today I attended “Parenting a Child with Autism: Putting the Pieces Together”, a conference for parents put on by Endicott College Institute for Behavioral Studies. The conference was quite, quite good. The keynote speaker, Margaret Bauman, MD, is the Founding Director of the Lurie Center for Autism at Massachusetts General Hospital. If you ever get to see her speak I encourage you to do so. She peppers the information with amazing anecdotes that make her material relateable. Today’s topic was Disruptive Behaviors and Medical Co-Morbidities. 

I needed this topic.

Children with autism, as most parents come to learn quickly, do not manifest symptoms of physical ailments in a typical manner. A neurotypical child of my son’s age could at least give you an inkling that his ear hurt, his throat hurt, his stomach hurt… A child with autism, be they verbal or non-verbal, cannot localize the pain and discomfort they’re feeling in a manner that allows them to identify it easily to you. They know something is not well, but expressing it? It comes out sideways.

My son’s latest illness showed itself before it made a major physical manifestation. The Friday previous, he was completely off in all his therapy sessions. We chalked it up to Friday-itis and being tired of a week of therapy. Looking back, it wasn’t entirely a wrong judgement, but going forward I know to pay mind to these patterns more closely for by Monday night we were in the ER for croup. He knew and could not tell us. Most people and most medical professionals can, and will, chalk up erratic behaviors to the child’s autism diagnosis. It’s our job as caregivers to stop them when we can see that it might not be entirely the case so our loved ones get the care they might desperately need to feel better.

I also attended a seminar on feeding by Christopher Perrin, Ph.D., BCBA-D, from Melmark in Pennsylvania. He was an excellent speaker! He gave a very clear, detailed but not overwhelming workshop on challenging feeding behaviors, how to identify the problems and how to work on solving them. He unabashedly stated that parents can be out of their depths with this and that that was absolutely okay, that there are professionals out there who can lend assistance alongside the child’s medical care team. I’ll go into detail on techniques offered another time as I try and sort out how to integrate them into the little bear’s life.

One cannot live on PB&J, chips, graham crackers, milk, yogurt and chocolate alone.

I feel bound up just typing that. 

This is what I’ve been keeping busy with anyway. J had an OT evaluation at the public school this past Wednesday. Poor OT, she’s a brilliantly nice lady – so nice J held her hand without prompting as we left – but he could not focus worth a damn. He stimmed on any and everything. It was insane. I am nervous about the whole IEP process but hopefully it turns out to be less of a demon than that which I am fearing. We’ll see.

To those of you who stop by to read… Hello and thank you for being there. 🙂

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