Tag: IEP

Panic

I love my 8 year old son with all my heart. I would do ANYTHING for him! Our relationship is suffering so much for this grand social experiment- I can’t reach him. Can we take a year off? Can’t I quit? Remote learning is destroying his self esteem, our relationship, and really challenging my patience.

We have chosen to keep him home year round this year due to being a high risk family. Safety over sanity, I guess. We worry that the transition from one day in school, one day home, repeated all week will wreck any chance he has of learning. So we decided to keep him home. His developmental pediatrician, and the SPED department at the school understood, and are all doing their best to support us.

I have never had this much anxiety before in my life. And I was diagnosed with GAD as a kid. I’m 42 and worried about this level of stress, and what it’s doing to my body, and my son. I know he picks up on it, I know it triggers his anxiety in response. I do not know how to deescalate us both. I’ve spent years studying CBT and DBT. No coping skills are helping. Therapy helps some. Medications don’t fix situations.

So, we flail. Trying to meet expectations that are so out of reach… setting his little heart up for failure – if he saw the amount of work assigned daily. I don’t show him. I’ve made some massive adjustments in ways of learning. I don’t know if the school will be okay with them, and I don’t give a… He feels successful if I type his words for him. We do all math work on a whiteboard together. Science is his favorite.

We just got an IEP. But how will they deliver services remotely? Cases are increasing in our town, and the school is open for hybrid. Do we send him for services? Do we send him back to hybrid? Will he learn better there? It would be much less stress, and tension between us. But he’s as terrified of COVID as most of us masked people. Would he see it as freedom, or abandonment? How behind is he? How worse would his anxiety and depression be? Does he know I love him? Does he know my anxiety is from the expectations the school places upon us, and not from being with him? How would he do with the transitions? Who do I ask for help?

I’m lucky- I am disabled, so I’m able to be home and focused on his schooling and provide the constant 1:1 he needs. I count those blessings every day. I’m terrified that we are going to fall behind on work- and the school will report us to social services. (It happened to his dad). It’s a real fear – not that we’ve ever been in trouble, but one that is never far from my mind. And I know there are millions more families in much worse situations than us. And my heart goes out to each and every one of you.

Lest anyone think I’m holding the school, staff or his amazing teacher responsible for this – I’m not. Not at all. We are in one of the best schools in the state, and it’s public. They are phenomenal to work with. The IEP process: we worked together for the common educational goal of a free appropriate public education, for my son. There was no need for a lawyer or advocate. All of these women know our son closely, and have been helping him for years. To finally have earned him the IEP? Feels like we won the lottery. I treasure each and every soul at his school. And I know this is most likely more difficult for everyone who works there. I’m not losing site of this.

Each day is an absolute horror show. I’ve yet to figure out a way to alert my son that it’s time to start working, that doesn’t end in him throwing or breaking something. (See, transitions = low frustration tolerance with him). I’ve tried color coded schedules with alarms. I’ve tried rewards, positive reinforcement. I’ve talked assignments up, explaining “it’s a short day – we don’t have much work, you’ll breeze right through it!” I’ve taken whatever trinket gets tossed, and put it away until work is completed. I’ve tried restricting privileges until work is completed. I’ve tried many, many movement breaks. I’ve tried breaking the assignments up into more manageable chunks of time.

What seems to work best? Reviewing the day in front of us, so he knows what to expect. Giving him choices of which subject to start with. Breaking it up throughout the day, with plenty of adventures in between assignments. Keeping with the same routine and schedule. Using a whiteboard for math, typing for writing, and hopefully soon, speech to text software to really give him some independence. Reminding him that I’m his helper and advocate- and that I have nothing to do with the assigned work, other than my willingness to be his 1:1 aide.

The strain this is putting on my marriage can’t be overlooked. My husband works full time, but is always offering whatever support he can give, outside of work hours. To me, that’s not helpful. We have differing strategies for interacting with our son, when it comes to schooling, and that seems to be coming to the forefront. So, like most things I said: “Thanks, but no thanks. We will stick with our methods.”

It really stinks being a control freak, like me. However, we do have our routines ironed out – some such as, giving him gum when he has to sit and attend to a lesson. That was the occupational therapist’s suggestion at the school. She said the physical sensory input of the gum and jaw movement would help him attend, and sit. So gum it is. It does help.

God what I wouldn’t give to be going on a play date – my biggest concern which snack to pack to avoid an allergic reaction from anyone we are meeting. Or to be thinking about what to get for this weeks birthday child’s present. But instead, this is my reality.

My husband is getting laid off the day before Thanksgiving. I’m nervous because I know I’m going to have to swallow my pride in a few weeks, and go to the local food bank. Again, I’m so thankful for their service. I’m fearful though. This year there may not be enough food. Have you seen the lines in Texas?

I volunteered for a year at ours – and it was the most emotional few hours of my week. Many of the regular clients – I was their only social contact, all week. The love and kindness they expressed melted me. I don’t think we hear enough of the stories from the inside. We see the pictures and hear the statistics, but what about the people? What are their stories? Where are they now? I’m rambling.

I’m scared the impact this pandemic is having on EVERYTHING. Sorry to unleash my anxiety on you all. If you have followed me thus far, I thank you. Please know I send all my prayers and thoughts of comfort and health to all of you. I’m going to go count my blessings to keep myself in check.

Tags acceptance, adhd, FAPE, IEP, mom, pandemic, parenting, remote learning, SPED

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School 2020

Well, we’ve had a solid six weeks of remote learning through my son’s school. He is now in the third grade, and adjusting with time, to the new style of school.

As anyone who has read my blog previously, you may be aware he has some learning difficulties due to his severe ADHD, and communication disorder. At home, we’ve learned how to work around these shortcomings. Both his father and I are able to see the signs: when a meltdown is coming, when a movement break is needed, when an explanation of sarcasm is due, and we often dance around his hypersensitive emotions. It is difficult as a parent, having lived with this child for eight years, to objectively weed out his issues, and see them as a negative.

Sure, he’s hypersensitive- but so am I. So is his father. I’ve never viewed this as a negative trait; it’s always been a positive for me. Isn’t empathy something we strive for, hoping everyone is able to experience it? Doesn’t empathy make for a better world? Sure, at times, the stress involved can be difficult, but for the most part- it’s a benefit to society, as a whole.

My boy doesn’t always understand sarcasm, or kidding around, but he loves jokes and joke books. He has a fantastic sense of humor, loves puns and is witty, just like his grandfather and great grandmother. I do have to get involved sometimes to diffuse misunderstandings, but with the extra information, he comes around.

We have been working with his school since kindergarten to get him the special education services he needs. We were denied an individualized education plan (IEP) in kindergarten, and instead he was placed on a 504 plan. We have at least three appointments per year with his developmental medicine specialist at children’s hospital. She manages his care, and has been encouraging us to fight for the IEP, since he was four.

After our experience remote learning last spring, I submitted a request for a re-evaluation. It was a pants on fire emergency, centered around his educational needs. They responded the same day that we would begin the process as soon as the fall semester started. Beginning in September, my son sat for weeks of academic, occupational therapy, speech language pathology, physical therapy and psychological testing. Both myself and his teachers from second grade completed the psychiatric evaluations. Most of the testing ran way past the expected time; often taking a handful of days, where it was only supposed to be two hours.

This wasn’t a surprise to me. My son and I do our best remote learning, but most assignments, which I believe are supposed to take around a half hour or so, can take us all day to complete. There is a fine line that I do not want to cross with him – pushing his frustration to levels that will equal a meltdown.

There are rules I work with him by. So many in our life tell me not to give in, or give up; when I do so, he “wins”. I haven’t found that to be the case. If I see his frustration tolerance diminishing, I know he needs a break- or the worksheet will get destroyed, document deleted or just a complete withdrawal. See, it’s not behavioral, and he’s not willingly fighting me. It’s neurological, and he’s doing the best he can. He has developed maladaptive coping skills, because he has no healthy skills to work with. I can’t shame him into doing his work by calling him names, or comparing him to others in his class- because he isn’t the same.

So Friday was the IEP determination meeting. I was a wreck. My stress level is off the charts, and I realized how much was riding on this meeting. Remote learning has been impossible this year. I was preparing to be denied an IEP, and starting to think about withdrawing him, to homeschool. (Which I know I would fail at. I’m terrible at schedules and routines. I have no experience teaching; my background is in office administration and writing).

Well, they were all familiar faces; and unlike in kindergarten, I felt differently. The overall impression I got from all involved was that they were there to help him in the best way possible. I still didn’t expect it to turn out favorably for us. We had met one or two administrators at the school who gave off the impression of: “well if you just medicate him, his problems would disappear.” It doesn’t work like that. Even though both my husband and I are personally against medicating children, we were able to get past that, and hear the Doctor’s recommendation, and started him on a low dose at the beginning of second grade. It helped, some, but wasn’t the magic cure we’d been led to believe it to be. And we are still working on finding a medication that helps him.

The meeting was intense. The specialists all took turns, sharing their evaluations and opinions. Everyone was sure to let us know what an amazing, empathetic and intelligent young boy we have. We heard this often. We also heard many difficult, but truthful things we, and they, witness with him. He’s at high risk to be bullied, has high levels of anxiety and depression in school. He withdraws as a coping mechanism. He avoids playing with others, saying often: “I have no friends,” “no one likes me” and “I can’t do anything right.” I cry now, as I write this. Stop and think about this, a second grader thinks this low of himself. He does have friends, and he is so loved. He does so many things right. I try to protect his self esteem in every way I possibly can- but I can’t be with him always.

We got the IEP. There was no question. As a mom, who has worked for four years trying to get the school to see what we do as parents, this was validating. I was completely unprepared though. I didn’t have goals or a vision prepared. I have to submit those today.

His supports and accommodations are all those we have been begging for, since he entered kindergarten. The problematic areas which will be focused on with his initial IEP are as follows: self regulation, emotional regulation, hyperactivity, focus, executive functioning, social pragmatics and of course general education.

I don’t know what this will look like remotely, nor do I know whether they will support us staying remote for the year. They did pick up on his difficulties with transitions, which is our main reason for keeping him remote. I know they are having children with special needs come to school for services, which would be great.

The relief. The confirmation. This wasn’t about labeling him for life. This was about recognizing what a brilliant, beautiful little boy can do, and with the proper supports, succeed beyond his and our best hopes. He is our shining star, and he will go far in this life. Now, time to go design those goals and vision.

Tags adhd, IEP, parenting, remote learning, SPED

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Stigma Post #1

The stigma associated with any health diagnosis can be difficult to live with. Mental health and neurodevelopmental diagnoses are still very sensitive topics. As a society today, we act as if we are so enlightened and accepting, but many times, that’s not the case.

Take, for example, the current handling of remote learning for students across the nation. There is no nationalized plan to implement IEP’s; nor anything offered statewide even. My son is on a 504, which has been rendered useless, since he’s not physically in school to receive the built in supports and accommodations.

Living in Massachusetts, school is cancelled for the remainder of the year. Our Governor, Charlie Baker, has been having daily press conferences throughout the stay at home period; keeping citizens up to date with the latest information and advisories. Our state is in the first phase of reopening.

This post though, it’s not about that. It’s about how invisible our special needs children have become in this pandemic.

Special needs children (and adults for that matter), have been completely neglected from inclusion, anywhere. This is the exact opposite of how it’s supposed to be.

I’ve heard Baker and Cuomo both repeatedly speaking of the graduating seniors, and how sad it is they are losing out on their chance of physically graduating, attending prom, banquets, etc. I feel sympathy for them, sure. However, these young adults have their whole life ahead of them. They made it! They are off to great things – the world is their oyster.

Like a mom friend on Facebook mentioned, our children are being left behind. They are invisible. When I try and talk with others in real life about how far behind my son is slipping, I’m dismissed with, “Well, they won’t be holding this time against anyone.” It’s invalidating and infuriating.

When both Governors Baker and Cuomo were asked about what’s being done to support adult disabled populations, neither was ready with an answer. I was not impressed. This population is just as at risk as those in nursing homes, especially if in congregate living. I’m aware they can’t be on top of everything, but we’re in week ten here. (And I’m not meaning to negate any of the wonderful work both have done to keep their states safe. This is just a matter very dear to my heart).

Perusing the Massachusetts Department of Education website, I’m saddened to see that there’s absolutely no mention of special education administration, or expectations.

As a special education family, we are left floundering. I felt invisible before this- now I feel as if we just don’t matter. And my husband and I have fought a long, hard battle over the past three years to be where we are with the 504 Ed plan. Our son has fought even more so, and to see him regress is heartbreaking.

I submitted a request this week for a re-evaluation for an IEP for my son. I don’t know when that will happen, but at least it’s been sent and received.

I just want for him what should be rightfully his. A Free Appropriate Public Education. Is that really too much to ask?

Tags adhd, FAPE, IEP, mom, pandemic, parenting, remote learning, SPED, stigma