Between a rock and hard place

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Dear @Domer90,

I don’t have cancer, but I have a rare form of genetic disorder called recessive titinopathy. When I got diagnosed with that, I had to look the condition up online because my doctor knew nothing. I learned that I would get progressively weaker and atrophy.

Having a condition is so tough. I thought my condition was an answer that God allowed after suffering for a number of years, but I felt so stressed out. I cried and fell into depression. It was so horrible and I felt so alone. I know how tough it is to battle an illness…

Please be there for him. Fighting a disease is incredibly tough. I lost some friends, I lost my confidence, and I had so much internalized stigma because I was disabled. I cried so so much. I would highly suggest praying a rosary for him, and also dedicate his suffering to God. Mary, Our Mother, will interceed and so will other saints. Don’t give up on supporting him, but please let him know that he is so loved.

My mother made a mistake when I was ill on denying my condition outright and lashing out on me. She was so upset with me until last year. Support is really really important.

I am going to pray for you. If you want, I can talk to your son if it helps him to have a friend to talk to.
 
It’s very disappointing to hear how unsupportive your sons teachers have been.
At least now he is finding the Cyber school is a better environment, but still, something needs to be done to train teachers in “mainstream” schools how to adapt to the learning styles of students with Autism.

It’s concerning that some kids from Church are students at the school he was bullied at.
I hope they weren’t involved?
In my view, kids often learn from their parents whether to accept or reject others who are a bit “different”.
If they were in anyway involved then I think the Priest needs to have a serious word with the parents.

Are the priests or anyone at Church or friends elsewhere being supportive to your husband and your self?
It is an awful lot for a couple to manage alone.

How is your son going with the Anxiety treatment team/CBT at the hospital?

Is your son interested in music by any chance or perhaps even to make Youtube videos or a blog to express his feelings?
If he is interested, perhaps some music lessons would give him a hobby which would be social and also might reduce any stress.

I hope you will consider starting a Go Fund me page to help you to be able to provide for the medical costs for your dad and your son.
I presume it must be financially straining. I really hope you have something like Medicare assistance to cover the Cancer treatment costs etc.
 
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You are very kind! Thank you. Fortunately, he does know that DH and I are there for him. We don’t give up looking for other options. We let him confide in us and that making straight A’s is not a priority. We tell him constantly we are there for him. Now, many of the side effects are goinng away, but his cyber school is worried about turning in assignments. We talk about his feelings, but he turns the conversation about past hurts. He lets his mind be occupied by past hurts and we cannot move these things to other subjects. He’ll be 18 and only in the second semester of sophomore year HS.
 
We have talked to the oncology social worker, and she referred us to Psychology Today magazine. He is already on board with therapists.
 
He played trumpet, but the lymphoma prevents him from resuming (tumor location). The tumor is dead but infected.

Then there is my dad who is in assisted living.with progressing dementia. I’m his POA and I take care of his bills.

Little support from Church.
 
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Domer90 said:
Teachers aren’t fond of kids with learning differences because they are entitled to have an Individualized Education Plan. For the teachers, this is a time sink.
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Asking you to consider that while you have had some bad apples, most of the professional educators are compassionate people who care deeply for their students. I would love to walk you around some campuses of both public and private schools where kind of every sort thrive.

And in the US, students with special needs ARE entitled to an IEP. Your son is entitled to have a “coach” type aid in school who focuses on him alone in the classroom if needed.
 
Trust me, I know all that. Funding is usually the issue at hand. And he’s only allowed that in public school, not private brick and mortar or cyber school (private). This is not to mention that the IEP’s are rarely carried out.
 
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In private schools they are called a 504. Again, the thousands of educators who not only carry out but advocate for their students with IEPs, including my own coworkers, family and friends, would beg to differ. You seem to have had conflicts, I pray that your experiences change.

Since you said your son will soon be 18, are you planning the GED route then into community college.
 
Love him, Pray for him, and pray for yourself too. We will do the same. God bless you.
 
No. We plan on him working to get his diploma through cyber school. He has a 504 plan, but it was mostly ignored. PA teacher unions are strong, and it is terrible when they threaten to strike. I wish it wasn’t that way, but I can hold my own when it comes to the ADA and the school’s role in that.
 
Domer90 said:
This is not to mention that the IEP’s are rarely carried out.
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I’m so sorry this has been your experience. My granddaughter is in public school. She was a micropremie and is learning delayed. She has two IEP’s assigned to her. Her regular class teacher doesn’t have to do any extra work on planning her classes, the IEP’s have done all that. Her teacher just has to help follow it which, so far, all her teachers have done. She’s in fifth grade now and will attend junior high next year. My daughter already has appointments with her new IEP which will also be attended by her current two. My granddaughter is making great progress but it is expected that she will remain delayed until she is a senior or after…that’s the way these micropremies tend to go. We are a mid sized town in Colorado and I’ve been so pleased with all the professional help she’s received. Sadly, it sounds like it’s not the norm.

There are many problems with public schools but this is one area here where they have excelled. I wish it was the same for you! ❤️❤️❤️
 
Sadly, our district has cut special ed by $250,000. We don’t have a lot of industry to help with taxes, so they remain high. There are neighboring districts that offer better services and ones that don’t. Our district fell on hard times during the recession and the teachers took a pay cut, which is nearly unheard of these days. The special education teachers that pulled my son out for help were awesome. Since he was mainstreamed, the homeroom teachers were mostly short on patience.
 
The south central US.

I’ve a close, personal friend who is an IEP in classroom aide for a single student, they are in PA. Another friend in PA (I used to have an office out there, so, I have friends there) with a children in a Catholic School who do accept the IEPs.

Seems you have run into a pocket of non-compliant educators, that is so sad. If you ever want to talk to my friend in PA, PM me!
 
Thank you. Seriously, the high school allowed a 504 plan but I don’t know if my son advocated for himself. I know we had his therapist sit down with the teachers before school started, but they probably had other things on their mind…like ratifying a contract.

And several of us were upset at the district over the lack of IEP follow through. It wasn’t just my child. He was due to have IQ testing done and it never happened. Since I volunteered in the school, I heard guidance counselors argue for more money to help these kids. That is why we left brick and mortar school.
 
The crux of the problem I’m seeing here is that bullying is being tolerated by those who have the ability, but not the will, to stop it. Bullying can be stopped, if people care enough and realize how destructive it is. Nobody should be bullied out of HS or out of any constructive activity. It’s the bullying that seems to be causing the greatest grief, here, and I’ll bet it’s responsible for at least some of his physical and medical problems. Not all of them, but it certainly contributes.
 
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Thank you @JanR and @(name removed by moderator) for your thoughtful responses. In both your posts, this was true. Teachers claimed they didn’t have time to fully carry out the IEP. One girl with selective mutism got yelled at by the music teacher for not singing. She was in third grade.

My son’s bullying continued after he finished chemo and was long out of his last brick and mortar school. 22 students had planned to accuse my son of threatening them (sexual or terrorist assault) over Instagram. The police were called in again, and all the kids were suspended. My son was so afraid that the labels would stick and he wouldn’t get to fly for his Make A Wish. He had a perfect conduct record. But the teachers didn’t like the admin, so the tenured teachers would just turn their heads. The younger teachers actually cared. Very sad. He was so terrified. We got him the psychological help he needed. Sadly, nobody was thrown out because the school is failing. There continues to be kids who transfer, and each incoming class is smaller and smaller. It’s a shame, really.
 
I’m not sure my son knows how to bully, and we have to prompt him about how he’s feeling. And the stress affects his sleep, causes headaches and the ability to study. He will not tolerate older kids picking on younger ones. And he was not popular for that.
 
Domer90 said:
after he finished chemo and was long out of his last brick and mortar school. 22 students had planned to accuse my son of threatening them (sexual or terrorist assault) over Instagram. The police were called in again, and all the kids were suspended.
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Confusing on this end. Your son was ganged up on by students at a school where he was no longer enrolled and a school that he did not attend had some sway over Make A Wish foundation?
 
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