The Never Normal

Every day since I last posted, I get something from Jonah’s school – maybe a phone call to tell me about an incident report and body check, complete with a listing of where and how bad his bruises are.  Then, most days, an e-mail as well — always phrased exactly the same but for the date and time:

Good Morning,

 This email is to notify you that Jonah was in a physical intervention on xx/xx/15 at x:xxam in the xxxxx and at x:xxpm in the xxxxxx office.  If you have any questions or concerns, please feel free to contact us.  Thanks

 xxxxx

Education Administration

 Anderson Center for Autism

4885 Route 9, PO Box 367
Staatsburg, NY 12580
* Jxxxxx@ACenterforAutism.org

—

It’s a sickening feeling, waiting for the e-mails, knowing they’re coming, understanding I cannot stop them from coming, trying to accept I am helpless to cease the cycle of Jonah’s aggressions.  And I was just interrupted by a phone call from them now.  They tell me “Jonah is okay” first, which is important, because I’ve panicked from seeing the 845 area code come up on my caller ID.  But I’ve gone from a heart-pounding worry to a dull, almost numb acceptance of whatever it is they’re calling to tell me.

I wish I had something better to report.  Jonah’s psychiatrist spoke to Dr. Ankenman from my last post, and together they determined Jonah was not one of the individuals who could be helped with his adrenaline therapy; his pulse and blood pressure statistics did not indicate an appropriate match.  And so they have been using Thorazine while very slowly titrating down his other meds.  The dosage of Thorazine has been increased, little by little, and now he is taking 50mg 3 times a day.

It’s not working.

I spoke with a childhood friend of mine who has a daughter with autism.  She’s been doing chelation and mega dosing with supplements, and my notes from our conversation include:

Search Robin Goffe – YouTube videos/articles & on FB

Guggenheim and Robin Goffe – video

Autism One Conference – Every May in Chicago

Immune System Deficiency

 BioMed

ATEC test by Autism Research Institute ARI ATEC

Healing the Symptoms Known as Autism – by Kerri Rivera, who started a protocol where kids recover entirely from autism

I’m grateful for her input, and I cannot say I’ve thoroughly investigated all of these things yet, but I noticed that the book (last item in the above notes) has a long list of reviewers who’ve rated it a 1 or a 5 (worst or best) and hardly any in between; people seem to regard the author as either a child abuser or a saint, which doesn’t bode well.  Plus I’m just not ready to climb on board with anyone or anything that has only anecdotal evidence.

Then, last week, I lost one of my best friends, DF, very suddenly.  She passed away after a hospital procedure led to complications. Today is her wake, tomorrow her funeral, and the awful finality of it is finally starting to sink in.  I’ve been sick to my stomach over Jonah, and now from my dear friend’s death, and I don’t feel like it’s the beginning of any kind of holiday season in which I’d like to participate.

I’m trying to stay optimistic, and I’m very grateful for the many blessings in my life.

Still, I feel stranded. Choked off.  Tired.  I’ve lost too many people too soon.  I’ve come to accept the deaths.  After all, at least our relationships were not lost, not really.  And I can even hope to accept the one relationship it seems I can’t fix.

But I can’t accept that nothing can help my son.

For those of you who left e-mail addresses, thank you.  I will write to you as soon as I can.  Thank you to my mother, always at my side visiting the grandson she loves enough to risk/incur injury and heartbreak every week just to spend a few minutes with him.  Thank you to my close friends (you know who you are) and to all of you out there who have expressed your support, left kind comments, assured me I am not alone, sent cards, never judged, and stayed with me through it all, good and bad.

We’re hanging on.

Jonah’s daddy, holding him on the grass of the Anderson School campus during a recent aggression. Jonah’s got Andy’s shirt tight in one hand. Eventually, Jonah calmed down. Once under control, Jonah got into the car and we started our visit.  Jonah’s daddy is amazing – he keeps his son safe and loves him so very much.

Later that same day: Jonah has a calm moment and even, thank God, a smile.  My sweet, precious Boo.