Before I get into this post – Lennon is doing ok. He currently has a terrible cold (and has brought on this post) but still exhibits the same thirst for life and learning as ever. There has not been a word about the transplant and so we are still waiting – kind of eerie as we are coming up on the 2nd year anniversaries for transplant one and two.

Now to my grief if you will… so Lennon has a cold brought on oh by the weather change – it is fall now and well that the people in the school can’t make sure he puts his coat on before he leaves the building and well that he is still immune-suppressed etc.

Yesterday, Lennon went to school just like always when he has a bit of a runny nose. It wasn’t anything that any of us have never dealt with because I am sure we have. At 12 p.m. my eldest calls and says the school wants us to get Lennon because they can’t get anything done since they are constantly wiping his nose. Uhm Lennon can wipe his own nose.

Yes he has a disability and yes he has special needs but there are some things he can do. He only had one hour left of school – that last hour consists of recess and lunch. Say that again and they didn’t have anyone that could bring him can we come to get him. Ok – we did. Perhaps it was worse than I thought – perhaps he had developed a fever. Nope, just a runny nose that’s all.

Then I find a note in his backpack stating that Lennon had a runny nose and it needed constant wiping and they couldn’t’ get much done due to the constant wiping of the said nose. What? Again Lennon could have done this himself and I am growing frustrated. Just last week I learned that he wasn’t receiving speech therapy like I believed he was receiving and I feel he needs to be receiving.

So now I am left with the thought, well maybe I am better off… no, maybe he’s better off if he’s being homeschooled. Then I would know that he’s working, and learning – because he can learn. He has finally learned to identify all the letters of the alphabet (YAY LENNON). He still struggles with his numbers but even that will come in time. The one thing that hinders me from really moving forward is the socialization that Lennon gets from going to a public school.

Yes, I know homeschoolers get to do lots of activities, with the right organization play dates, field trips and so forth. Next summer he can even start Special Olympics as he will be the right age.. but the question then becomes: Can I manage to homeschool him? Can I handle the pressure and stress that does come with it, when he’s having a terrible day or a meltdown as he’s becoming frustrated? Would he still enjoy learning as much as he does now?

There are many questions and feelings I have about this. For one, I shouldn’t even have to consider homeschooling him if the public education system would do what they should – educate. I am not saying all school systems are like that but I am feeling a bit frustrated when it comes to the special needs children. Lennon is in a regular 1st-grade class and works on a kindergarten level – he knows he doesn’t know the same work as the other kids – he does understand some of what is going on. I have gotten some support in venturing into this but I just don’t know if this is the answer for Lennon.

I think however that my decision shouldn’t happen now – it should wait till after the surgery because I think I already think he should be home (in a bubble again) after he is able to return home. I don’t think I will be trying to send him off to school as soon as possible – not that I really pushed it hard – but he loves other kids. Maybe I will only home school him for a year and then re-evaluate.. maybe…

This definitely requires some pondering, researching and finding the resources for homeschooling special needs children, education for special needs children in any capacity for the public school system.. tho I will welcome your feedback… thanks for listening

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  1. I have a special needs daughter (now an adult) so I understand some of what concerns you. This is what I would do about school if I were you. I would investigate the special needs legislation in your state. Here in California, the school is REQUIRED to offer the special education needed by the student (including an individual classroom aide, if that's necessary, etc.) and if they can't fulfill the requirement, the school district pays for home teaching so parents aren't expected to homeschool. Parents can call for a review of the Individual Education Plan. If it needs to be adjusted that can be done at any time. If your teachers need to have it written down that your son can blow his own nose and will receive speech therapy x times a week, get it written into the Individual Education Plan and hold the teachers to it. There are special education legal specialists who accompany parents to meetings and sometimes it's worth it to pay the legal fee to get what your child needs if your district is being balky. I have also homeschooled so I understand that also. But before you make that decision, unless it's something you really, really can't wait to do, I would find out what is protected by law in your state and start using that legal information to force your school to do what they are required by law to provide for your child.The information you need may be online. Or you may need to call the Department of Education in your state capital. Ask lots and lots of questions and learn as much as you can. Take notes. Ask for all the special education pamphlets and brochures. Find out who you can contact if you believe your school or school district is being lax in carrying out your state's mandate.That's my 2¢, hope it helps !! — Barbara

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