Tuesday, December 13, 2011

The Tipping Point

I haven't blogged lately...as you may have noticed.  Hard to blog when the majority of the times that you actually feel like writing, you hesitate because it's generally not good news you'd like to share.  M continues to deteriorate right before our eyes, and no one can yet tell me why that is.  We await results from yet another genetic test for congenital disorders of glycosylation.  I continue to be on high alert to make sure he doesn't get headed down the path of severe constipation again.  He's currently *this close* to it, and to add to my ever-growing list of neuroses, is the new job of making sure he's ingesting the proper amount of miralax to make him have a bowel movement...making sure he gets his probiotic every day...making sure he gets his calcium supplement three times a day...making sure he gets the prescribed medicine to treat his endocrine disorder twice a day, etc.   I'm tired, y'all.  I'm doing a good job of going out with my girlfriends when I can, but like a junkie, those highs only last so long until you need another fix.  And that need starts happening sooner and sooner than the last time.  There is so much crying and yelling at our house, all of our nerves are completely frayed.  Poor B has finally shown signs of being affected by it all as well lately.  The poor kid can't seem to escape special needs and disruptive behaviors as one of his peers at his new preschool has recently been diagnosed with sensory processing disorder.  This boy is constantly hurting his classmates by pushing them down, throwing things at them and knocking down anything they're playing with.  I've tried so hard to arm B with the tools of empathy and understanding since I understand all too well what this child's mother must be feeling right now, but I am starting to suspect that since the boy's Mom is a part-time teacher at this school, that the sides have been taken, and my sweet kid's needs are likely being seen as inferior to the one disruptive child's.  What's the right answer here?  I've talked with the teacher and didn't feel like she seemed to think things were as bad as B says that they are.  Anyhow...

I will say that a very high point did occur the second weekend in November.  I had the amazing chance to meet two women I've known virtually for a very long time.  One woman came here from Boston with her two boys.  She and I were on a birth board on baby center.com when we were pregnant nine years ago.  Autism hadn't entered either of our minds at that point, but we followed each other through toddlerhood to diagnosis and have been online friends ever since.  The other came all the way from Australia with her husband and son.  We've been on an autism parenting board with one another since our boys were about two years old.  At that time, we remarked on how similar our kids were to one another and how they seemed very similarly affected by autism in their personalities and their immune system function.  She's been right there with me, virtually holding my hand as we saw her boy make great gains in his abilities and my boy declined.  I cherished both of these women before, and after having met them and their kids, know that they will be important parts of my life forever.  We laughed like you wouldn't believe and told stories that we wouldn't tell to 99% of the rest of the world.  They are amazing.

Back to M and our tipping point.  He's gotten to the point of not being to go anywhere in public without a huge, aggressive meltdown.  At 74 pounds, it is getting more and more difficult for me to control him, and that frightens me greatly.   As thick as my skin has gotten through the years, I am frankly exhausted and quite angry with the embarrassment I feel from these meltdowns.  B just began taking a karate class on Wednesday evenings at a place that is located in a busy strip mall in our small town.  Occasionally the other half is able to come home from work so that I don't have to bring M with us (relief!), but most of the time he has to join us, and he is causing a huge scene inside the karate studio and outside which forces us to spend the rest of the time in the car.  It's not fair to my four-year-old to not have his Mom in there watching him.

School is becoming a challenge again as well, and despite the amazing patience and kindness M's new teacher has shown, he has started to once again dig his heels in and resist going in some mornings.  One such time about two weeks ago during terrible winds (a definite trigger for M) we were forced to stand outside in the cold and the wind to try and calm him down until he could go back into the classroom.  His school is made up of all portable buildings, so there was no safe place for he, his aide and I to go.  We tried to go to the cafeteria, but the p.e. class was taking place in there (neat, huh?), and we tried to go to the occupational therapy room, but it was locked.  In order to get him out of the wind, we finally ended up in the entryway of the boys bathroom.  Not the most ideal place, but the best we could do.  We finally got him calmed down and asked him (with the help of his iPad as a communication device) if he felt better.  He pressed 'yes.'  I then asked if he wanted to go back to his classroom and he pressed 'no.'  After a few more minutes I asked if he wanted to go home, and when he hit 'yes,' it was our 'ask and you shall receive' moment, and I took the poor guy home.

Today at pick up his aide informed me that at recess there were a group of kids sitting up against a wall outside staring at him and laughing.  She (thankfully) told me that she put an immediate stop to it and told the playground monitor about what had happened.  Apparently that Mom is also the parent of a child with autism, so she says that she will be on it and make sure it doesn't happen again.  But that, combined with everything else makes me realize that something needs to change...and soon.  M can't live like this, and we can't live like this.  Please keep our family in your thoughts.  We could use them!

Sorry to come in with a long-winded, depressing ramble, but there you have it.

No matter what, though, we know we are still fortunate in so many ways and we will do our best to remind ourselves of that fact this holiday season.

I hope that your families are happy and well and that you make it through the holidays with more smiles than tears.  Here's to a New Year...just around the corner!

14 comments:

GB's Mom said...

Praying you get some answers and relief.

fer said...

Oh Deb, I wish I could be one of those local girlfriends you go out with...

I am thrilled to hear that you connected with far-flung friends, including our old birth board community. That made my day.

Love you. Your spirit is inspiring.

Nicole Callihan said...

Oh Deb, my heart goes out to you, mama. Thinking of you and loving you.

Usemeplz said...

Oh, great post. thanks you for wishing. I think after reading this post all people will wish you the same. try to be happy.

Mom to JBG said...

My heart goes out to you. It is hard when they get so heavy you can't pick them up and get them out of a situation. I hope you get some help soon!

Leah said...

I tried to comment a few days ago, and it didn't go through. I can't remember exactly what I typed, but I know it was something about "getting it."

Oh. How. I. Get. It.

Hugs, and I look forward to seeing you next time you are in TX.

Hetha said...

Deb - you guys are in my thoughts and prayers for sure. I totally get the whole not wanting to blog thing because all you have to report is just a whirling dervish of shit. Totally get it and haven't posted since July because of it. We are getting Ethan an autism dog in August and I'm really pinning my hopes on it, hoping that we can go out in public safely someday, hoping that the dog can calm him when he's upset, etc. It's such a difficult path we're walking and it feels so freaking lonely and strange, but I think of you sometimes and feel less alone in it all. Glad you got to meet and spend quality time with your wonderful friends! Very cool.

Jeanine said...

We often have school refusal going on here. My daughter is not autistic, but has a host of other issues. Surely, she must have a dab of autism in there somewhere. I feel your pain with the school refusal and with the kids making fun of/talking about your child on the playground. It is so painful. I cannot take it anymore. Like you, I feel something has got to change. We have, over the years, changed many things. I feel like we are always changing. But somehow as my daughter entered her 10th year, I feel I have a much better understanding of her issues and how best to help her. The school district says that we keep running away from things, but really we are only learning more about what plagues her. Best of luck. You are not alone!

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Maliha Sazin said...

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colin- Driveway paving essex said...

ah bless ya...great blog tho deb, i like your jibba jabba!!

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Valerie Foley said...

How'd I miss this?

Thank you for opening your home, your life, your family... everything to the autism vagabonds.

Knowing you guys has made the hard bits bearable, and the good bits so much better.

:)

Floortime Lite Mama said...

I am sending you many many many many hugs dear Deb

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