My Kid is a Damn Nutter

[Clodfobble]

Our nightmare summer from hell is almost over: we are back on the surgery schedule for a tonsillectomy. And when I say nightmare from hell I really mean it: at his very worst--i.e., about 4 weeks spanning July and August--we were experiencing roughly 5 tantrums a day, each about 30 minutes. The level of aggression during these meant that my only option was to lay with him on the bed, restraining him in a hug until he calmed down again. Meanwhile, my 2-year-old daughter basically gets to sit there and watch her mother pin her screaming brother to the bed. I'm sure that's been fantastic for her emotional development as well.

This whole time, his bad days and worse days have been directly correlated to the size of his tonsils. He tells me every single day that his throat hurts, and that he wants to go back to the hospital. He then reiterates all the details that he remembers from the last time he went to the hospital for the adenoidectomy--the pajamas he wore, the nurses he saw, the toys in the waiting room, the hospital pajamas, the oral medication, the IV, the special mask... and the feeling better. Today he basically promised me in broken phrases that if I would let him have another IV, he would be calm and not fuss at all.

But today we finally saw our new doctor, who gets it. We have (yet another) antibiotic prescription for symptom relief until the surgery on the 15th. In addition, she has ordered x-rays for his sinuses, because she suspects that a chronic sinus infection is actually what keeps re-seeding his tonsils after every round of antibiotics. If the x-rays confirm that, she will also do a sinus wash during the surgery, which involves (highlight for grossness) sucking all the pus out of his sinuses with a giant needle, then flushing them with an antibiotic fluid.

This woman is my hero. I almost started crying in her office when she dismissively said, "Of course I believe you. We're going to help him."

[squirell nutkin]

You are the most awesome woman

[xoxoxoBruce]

Well, she's got no choice, she's doing what she has to do... but she shouldn't have to do it, and wouldn't, if the mother fucking doctor did his god damned job.

[skysidhe]

I feel for you clodfobble. After reading your post,tired for you too. I am glad for the good news though, I am sorry for the hassle and the pain you all have to go through just to get to the right outcome.

[Griff]

You are amazing. Your chronicles are helping me think about how I need to relate to parents, thank you for that. g

[classicman]

I was going to do this in a pm then decided public kudos were/are well deserved.

Clod - I'm constantly amazed at all the challenges you unwaveringly (sp) overcome.
Your posts have led me to keep keep track of those who are really helping vs those who are just going through the motions. The latter are systematically removed and replaced.

I really don't know how else to say this, but you repeatedly inspire me to keep on fighting when everything I'm dealing with seems so overwhelming and my efforts futile.

Thank YOU.

[Clodfobble]

Originally Posted by Griff

Your chronicles are helping me think about how I need to relate to parents, thank you for that.

On the subject of relating to parents, a friend of mine wrote this a week ago in reaction to a bad experience with another parent in her son's mainstream class. She gave permission to others to share it, and ultimately was asked to read it in person to the entire teaching staff at her son's school. It's really beautiful.

As a mom with a child with autism, I want pretty much what every parent wants
for their child. I want him to have opportunities to learn new things and
experience life as normally as possible. This means he needs to be in a regular
general education classroom for as much of the day as he can tolerate. It also
means that sometimes he may melt down in the middle of that gen ed classroom.

My son is very smart. At two he was reading and writing words like storybook,
and at three; Wellness Education. In Kindergarten his classmates were in awe
that he could read everything written on the board and even around the room on
the first day of school. He could do all the school work, but he could barely
talk. He couldn't hold a conversation or ask a question, but he loved school
and his classmates.

Academically he needs to be with his peers. Behavior is one of the big issues.
He is impulsive, so if he thinks of something he will jump up and do it. He is
compulsive about doors, he loves to open and close them over and over. He does
this when he is anxious or there is too much going on around him. When this
happens he may melt down into crying and screaming if you try to stop him from
playing with the door.

This year my son starts 3rd grade. Last year he learned his multiplication
facts while his sister was learning hers. He learned in two weeks at the
beginning of school, while she took most of her 3rd grade year like all the
other kids in her class.

My son talks a lot more now. He can ask questions and comment, but holding a
regular conversation still is beyond his capability. He loves school, and he
loves friends even though he doesn't really know how to play with them, but he
is learning. He understands everything that is said to him, and he feels
other's emotions around him. He is very sensitive, and gets very upset and hurt
if he thinks you are mad or disappointed in him. He needs to be in a regular
classroom to learn and grow. Being around typical kids helps him learn typical
behavior even if he can't always maintain that. He learns so much from his
typical peers, and I believe they learn so much from him.

My daughter is a better person for having a brother with special needs. She has
more compassion and empathy for people. She realizes that people can see the
world very differently than she does, and that is okay. She has learned that
being embarrassed by her brother isn't nearly as important as supporting and
encouraging him when he is upset. Kids in an inclusion classroom get to learn a
little part of these things too. Academics are important, but don't we want our
kids to learn to be better people too?

It is hard being a mom with a child with these incredible assets and also some
incredible needs. It is hard to walk into a general ed classroom with typical
kids putting away their supplies and talking to friends from prior years,
parents talking with other parents, and you know they will soon see that your
child is different. It is hard because these parents look at your child getting
upset because he can't open and close the door, yelling out that he doesn't want
to sit in his chair, getting up and running around the room and they have a
horrified look on their face or they turn away and avoid looking at you or your
child. You know that they are wondering why this child is in their child's
classroom. You know that it will probably be this way at every party or event
you have to attend. You hope that their child will teach them over the year and
change their attitude, because kids usually get it much sooner than adults.

My child will have a good year. He is happy and loves learning. I believe
there will be at least a couple of kids in his room that he will consider his
friends. I will work hard this year to be an 'inclusioned mom'. I will try
hard to reach out and talk to the other moms and get to know them. I will try
to foster a sense of openness so they feel free to ask me questions and learn
more about my son. I realize that it is my responsibility to educate where I
can, and allow everything else to wash off me like water off a duck's back. My
son seems to be better with this than I am, but I am learning. Thanks for
listening.

[glatt]

Thanks for posting that. I'm glad to have read it. That should be handed around to every parent in every class with a special needs kid.

[Clodfobble]

In less than 5 years, that will be every class.

[jinx]

Dr. Jeffrey Kahn of Austin Ear Nose & Throat should be made aware of what his incompetence has caused in some way.

You're a fighter Clod, I admire the crap out of ya.

[classicman]

Damn right and next time you see your friend tell her that I'd like to share her letter with some people out my way. PM if you prefer.

[Clodfobble]

She's already said she's happy to share it with anyone who needs to read it, or I wouldn't have posted it on the open internet. Feel free to pass it on wherever necessary.

[Clodfobble]

Just when you think you know at least one tiny thing for sure...

Fragile X is one of the few testable, confirmed genetic diseases, present from birth, that accounts for approximately 5% of autism cases. Some parents do not try biomedical treatments because they have had the genetic testing and know for sure their child has Fragile X, and many more parents assume they shouldn't bother with the genetic testing because their child is responding to biomedical treatments.

Except it turns out that, quite surprisingly, the symptoms of Fragile X actually respond to antibiotics.

Ethell and her colleagues in 2009 found that minocycline lowers the levels of matrix metalloproteinase 9 (MMP9), an enzyme present in the normal brain whose levels and activity are over-expressed in the fragile X mouse. MMP9 inhibits development of structures called dendritic spines, tiny mushroom-like projections at the ends of synapses that allow neural cells to communicate. Lowering the amount and activity of MMP9 strengthens the dendritic spines and improves the establishment and maintenance of circuits in the brain.

Lessons for the day:

1.) If a parent says something is working, don't fucking dismiss them. Figure out why it's working.

2.) Overuse of antibiotics may have even more significant implications for our population beyond breeding superbugs.

[BigV]

Dear Clodfobble:

I'm sorry I have taken so long to acknowledge your great work here and your even greater work as a Mom. You're awesome.

[Clodfobble]

I'm tired of being awesome. I want to be normal, and smile, and sleep on occasion.

Sleep would be especially useful tonight, as I will almost assuredly be pulling an all-nighter in the hospital tomorrow night. If I'm lucky, they'll decide non-stop screaming is bad for his throat healing, and sedate him again in the evening.