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Back to School

PinwormsBy Kim Stagliano

I suppose I shouldn't complain, our school was in session until late June.   But summer is H-A-R-D when you have a child(ren) with autism. Like I need to remind you? We were fortunate to have some extended school year programming and a camp  that actually allows kids with behaviors and over the age of 9!   My oldest is entering her "senior" year of high school. Can you smell my terror from your computer? My middle daughter is in her third year of high school, and my baby, who turns 13 next month, is a 7th grader. If she could speak I'm pretty sure she would be a surly  pre-teen telling us all to "just leave her alone!" Her behavior this summer has taxed us all to our last nerve  - a combination of gut issues and the general mien of a 12 year old girl.  (As an aside, my folks sent me to boarding school at 14, need I say more?)

How are you holding up as the summer ends.  Are your kids back to school already? And what are your hopes for this coming school year?

(PS) I mentioned gut issues? Who among us hasn't carried a dead worm in a baggie to the ped?  Gary didn't make it..... 

Comments

Theresa 66

Ganga,
Have You done IVIG or cunningham panel yet? We are fairly certain we are fighting PANDAS, because DEEP regression w/strep and help from abx and steroids. We are doing preventative amox. to keep
strep away, but I think he reacts to strep even when on it.
On the school front, glad we are back, He needs that to learn some social skills and the structure of school is good for him.

Jan

School? OMG How I miss those days!

Andrew was at an amazing program at the South Coast Educational Collaborative. His program went almost year round. He only had those typical school vacations (Christmas, winter, spring) and a total of about 3 weeks off between the beginning and the end of the summer. Amazing teachers, who were respectful, caring, and best of all fun.

Adult land is a different world all together.
Day programs are terrible. The only good thing is that they don't have ANY vacations, but you need one from sitting at a table all day doing kindergarten coloring sheets, or puzzles. When cooking is making instant pudding and pigs in a blanket. (How's that for healthy?) Sensory? NONE. Exercise? Almost non existent? It's a sad sad world.

I yanked Andrew out of there after 5 years because it was killing him. I set up a program from home which is much better BUT we also lost 10 hours a week of services.

Enjoy school folks, even with those long and often difficult vacations because you will miss them when school isn't an option anymore.

Sylvia

My 15 year old goes to year round school now, and today is the last day of his two week summer break. We almost made it without incident. About an hour ago he flushed his brother's (who is also on the spectrum and VERY protective of his stuff!) rock collection down the toilet. I found him mopping up the water that was on the floor with bath towels. This could prove to be a very expensive problem. Civilian parents (those parents who do not have children on the spectrum) cannot possibly fathom what we ASD parents most cope with every day. Constant supervision, constant awareness of EVERY single thing. Add that to all the other responsibilities we have and the word "stressful" doesn't even BEGIN to describe our lives! Once things got cleaned up I began to get shakey - and that rarely happens to me, as this is my normal life. But sometimes the overwhelming responsibility hits you in the face. So yes, I need school to start, and my son needs to get his routine BACK.

SarahW

I have end of summer burnout so I cannot wait until school starts. Summer started great but by the time mid-August rolled around, my son started refusing to go to camp and was acting out at the counselors, running away, being very non compliant mainly due to sensory overload. Last Wednesday, I got a call from the camp SPED director asking to keep him home for a day so I did and have kept him home since ($500 down the tube but what can you do? he just couldn't cope with camp this year and they couldn't handle him) Yesterday morning while I was making breakfast, my son took off and ran across the street and into my neighbors house. My neighbor has a sword collection stored in his garage and my son went right for them. After frantically looking for him, I had to go over and bring him home. My neighbor paid me a visit later that evening and lectured about supervising my child better- I need to hear that like I need a hole in the head. The reason I am exhausted is because I DO supervise my child but he is fast and I'm middle age and btw, I wasn't born with eyes in the back of my head (wouldn't that be nice). This is the last week of vacation before school starts and my family and I are headed for Northern New Hampshire for vacation. I am looking forward to the trip but am also fearful as we'll be staying in a lodge on a pond in a forested area. I make a list of all the safety gear needed for the trip. He wears a LoJack tracking bracelet on his ankle and I have his swim vest, I have a back up GPS device just in case (welcome to the new normal). Hope all goes well. Please God, just get me through to the first day of school. My new favorite "holiday".

maurine meleck

Did you say gut, worms? LOL. In the last year, my grandson has been diagnosed with Lyme disease, mycoplasma,PANDAS,high measles, high measles, mumps, rubella, and chicken pox titers(besides the old ones of HHV6, CMV etc) and the newest toxoplasma. He swallows more pills a day than I care to mention. Does anyone still think autism is not a medical issue?

Linda

Ganga,
It might work better for you to find a socially active group of homeschoolers where your kids can have the best of both worlds. The nice thing about homeschooling is that during flu or strep season you can choose to lay low until it blows over, being more careful about who and what your kids are exposed to, instead of the daily exposure to hundreds or thousands of kids in school where attendance is mandatory. You have much more control over environment and food. Also, you would have the option of traveling, going on trips with the group or as a family. Just wanted to mention it. A lot of people don't think of homeschooling as a viable option, but for some, especially the medically fragile or those that have a difficult time coping with the demands of attending school, it can be a relief and healthier - especially if it means being able to avoid bouts of chronic illness and medication.

Kim, not trying to be oppositional here (you're talking boarding school and I'm responding with homeschooling :o)! Not denying that some kids do well in school and I'm glad that your school system meets your girls' needs and that they look forward to it. It sounds like Ganga has a different situation where her kids do better outside of school and I wanted to suggest that there are other options.

Ganga

I have a 16 year old ASD and a 8 year old NT kid. Summer was hard since I had to tag the 16year old for my NT son's activities. I also decided to wean my ASD kid of his medication since I know what caused his behavior and decided he does not need it and I can treat him. He has PANDAS and we treated aggressively with antibiotics which did have effect on the gut. That was the first half, the second half I weaned him off the antibiotic and started treating the gut. He is now at a pretty good place. Home seems to be the best at his own time and routine and no junk food. I badly want the kids to go back to school, since I had no rest or sleep this summer,but too scared to send them to school since even if one catches the strep I have to begin the whole process again. MY ASD kid is really doing well all around and would benefit from social interaction. But strep is really a monster for us. So the life of an ASD MOM is not the same.Hoping positively for a new academic year.

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