Starting school or NOT?

[socalmom]

Hi, My son who is congenital Lyme/PANS is supposed to start Kindergarten this fall, only problem is we are over whelmed with how or if to do this!

 

He was dx'd in March with Lyme after we chased PANS for a brief bit.

 

I keep getting feedback that I shouldn't send him and that he will not be able to do a full day anyways(I agree) but I can't homeschool and I am already exhausted as it it.

 

Question is: How do I proceed? I requested an assessment but was met with very sour tone and borderline rude response from assistant principal.

 

 

I feel so stupid, I have never navigated public school before,and a lot has changed since i was a kid.

[Kimflow]

Socalmom,

 

After years of ocd/anxiety that flared every winter and that was always attributed to "autism", due to PANDAS flare versus PANS flares, we finally figured out he had PANDAS/PANS, Lyme, probably bartonella, maybe babesia. After all these 6 years of sending him to school and what I have asked of him already, there is no way I can send him back now knowing that he has all the medical issues. However, I have known for a while that he will learn better if we do it our way. At school, all the federal rules about inclusion....well, much of the day is wasted stressful time for him. We will learn how he learns best at home and with the least anxiety possible. I am scared as I too am overwhelmed but for me, it is just a trade off of different stresses as there was alot of time and stress involved in coordinating, meeting with school, etc. Even if he improves to a great degree from the upcoming IVIG, I don't know how even then I would send him back as school is a cesspool of germs. You are just swimming in germs there. If I get him back, do I really want to risk it all again. I don't.

 

That being said...I don't what your son experiences during his flares....maybe it is not as severe as my son. I also am able to stay home with him...some moms can't due to family situations/needs.

 

So no real answers for but I understand your dilemma.

 

Regarding evaluation.....keep after them. Don't you have an early intervention department or even call the health department to get him evaluated. In my state, they do have medical "school" which is where the child receives 6 hours of home instruction.

[Hopeny]

My daughter had a terrible school year this year in second grade, emotionally. During the last week I decided to look at private schools. I was able to find a Montessori Elementary - who even knew these things existed! I am not a Montessori fan generally but when the director told me some parents described the school as "home schooling on steroids", I was sold. Just throwing this out there. You need to take care of yourself too and homeschooling is a huge commitment. I also recall that many preschools offered an extra year for Kindergarten transition, maybe this is an option for you. The germ thing is an issue, but I think it can be managed with hygenie habits and medication. Before the Lyme dx my daughter was put on phropylactic inhaled steriods for asthma, so I think its reasonable to do the same for Lyme/PANS. Good luck I know how difficult it is.

[JuliaFaith]

My ds14 has done an on-line free public school for 2 years now. We are hoping he will be ready for the local school this next year. It is called 'Virtual Academy' which is a private paying school, but in some states they have a free, public, part of the school as well. Not sure which states those are offered in. Not sure if they start at the kindergarten level either.

 

Let me know if you want more info. They have advertised on this forum in the past.

 

Best wishes on healing.

[socalmom]

Thank you, I have considered home schooling, The stress is horrible, for him and me and our public school is Charter and my first contact with them was AWFUL.

 

I am unable to get rid of all the PANDAS/PANS/PITANDS issues, IVIG knocked the OCD down, and maybe out, but the fears/intrusive thoughts and tics are still there.

 

we have Lyme, babesia,bartonella and I do worry about the exposure to more stuff especially strep at school.

 

I really worry about the isolation though.

I am really sick and my husband may be too, so home schooling might ok, If I could hire someone to do it.

 

I have to request an assessment- when they are back in school in July. I did one in writing sent to the Assistant Principal and she was less than kind with her words, even saying that I.E.P'S are for kids in wheelchairs!

[Kimflow]

Oh my gosh,,,,,,I just have to say that assistant principal is a real burr under the saddle already. It also doesn't sound like she is going to be very understanding of PANsPANDAS issues.

 

You could be the first one to educate them but as I mentioned before, after 6 years in public school that was for the most part very supportive, I am exhausted by all the meetings,red tape, rules and regulations that make no sense for my son, intense communications necessary to make them understand his anxiety/ocd.

 

I wish you luck......Maybe you should switch to talking to hte principal as right now the assistant principal has given clear indications she is only going to increase your stress.