Autism, Epilepsy, and the one-in-three chance of ‘Both’

This dad brings up the statistically significant overlap of autism and epilepsy. I remember my son’s first seizure – the crash, the thrashing and then utter stillness. I thought I’d watched him die. I still flinch at the gym when when one of the big guys drops his weights at the end of a set – that sound…

The Additional Needs Blogfather

Epilepsy Awareness Day, or ‘Purple Day’, is on the 26th March, and this will be the first ‘Purple Day’ since James, our 15-year-old son, added Epilepsy to his growing list of conditions that already included Autism and Learning Disability…

It’s been quite a year, quite a journey, as we’ve rapidly learned about a condition that we knew very little about before.  But let’s start at the beginning, mid-March about a year ago, when something “unusual” happened with James at school…  I remember the ‘phone call well, it was early afternoon and I was at a work meeting about 100 miles away from home.  In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher…

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Let Me Hold Your hand Through Life My Son (Autism and other things too) by Zanele Dlamini 

The mother of an adult son with autism processes her thoughts and emotions by composing a letter to him.

David Snape Show - Bourne and Beyond

A mother’s promise to her autistic boy on his eighteenth birthday..

If I could turn back time, my baby boy, I would rub out Autism from your life.I would be flying around doing superhero things that would give you a better start in life. Give you all the tools to survive this world on your own.Now that you are an adult. There is so much that I wish you knew. So much I wish I could tell you about people and relationships. There is so much you need to know about love (girls too), pain, abandonment and loneliness. If only you could understand.

My son, I want you know that I cried today when you were diagnosed with yet another mental health problem. It is like you are in a fighting ring and the punches keep coming from all sides. I had to allow doctors to inject you for the…

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The care giving must go on

A new care giving blog opens up about those days when it seems like the whole world – even the DOG, for cryin’ out loud – seems to need your care. But then the news intrudes with some perspective.

Care Giver Life

So a couple of posts ago I wrote about my dog getting older, he is now 14 years old. I had to buy some doggie diapers for him , well as an update the doggie diapers are working so well that I just bought more. I found the best price at Amazon.

So now as I’ve said before I just take care of everyone. This week so far has been very hectic as my new assignment with Hoover(my dog) moves on and of course my mom has been a bit demanding this week(her arthritis has been really bothering her, and her hands are just terrible. I put warm compresses on her hands, it helps a little bit. My stove broke and i’ve already put to much into keeping it working so I picked up and (what i call) an old new stove. its from the 1950’s i think but it…

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Mother Nature, Queen B_@t_h

Nah, I don’t need to spell out the word that every white kid has adopted to self-identify as something other than every white kid (Is there a mathematical formula to express that?).

Anyway, the view from our back deck last night:

So Ma Nature comes struttin’ through here like a Kardashian in front of a camera.

You know what her histrionics can do to an internet signal? The signal upon which your kid with autism (another of Queen B’s contributions) is depending for a bit of entertainment to relax for the night?

The signal which is interrupted, sending the kid into your room with anxiety rising into rage?

The signal which, when lost, can only be explained to the kid with stuff like, “The computer is broken. Uh, until tomorrow…,” the saying of which can put you on the bad end of a person with autism’s violent meltdown?

UPDATE: A friend made contact to note that her daughter with special needs had a seizure due to the systemic disruptions caused by the storm. I was so ticked off for my sake that I neglected to mention Mother Nature’s fine contribution to those in our care.

Thanks, Mother Nature.  Thanks a bunch.

A Love that Lets Go

So important to honor the dignity of those in our care, even if that presents difficulties all around.

BeautyBeyondBones

I’ve spent a lot of time recently in my own head. Today marks the three month mark since my mom’s stroke, and there have been a lot of ups and a lot of downs.

And I’m learning a lot.

And honestly, I’m learning a lot about God’s love for us.

We’ve reached the stage in my mom’s recovery where…there’s a frustration within her about how things aren’t back to normal. And a gripping desperation for autonomy.

And I’m going to be really honest, being in my position, as her grown daughter, having come home to be her “sidekick” as I call it – there’s a really delicate balance of how much help is too much help. I want to assist her so that life runs smoothly, but I don’t want her to feel like a child or that I’m belitting her or discrediting her capabilities or contributions. And I’m finding…

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The Ravenous Bugblatter Beast of Traal, (not) at your service

I am reblogging this one. My wife spotted it as one of those “Facebook Memories” from 2013. In this piece, I note my own need for boundaries. I neglected this and in 2015 was laid out by anxiety and depression. 2016 was a year of healing and growth for me. Please, if you detect your own stress points as a caregiver, seek help. Pain is an important warning. God bless you.

Sometimes Care Giving Stinks

“…avoid the gaze of the Ravenous Bugblatter Beast of Traal (such a mind-bogglingly stupid animal, it assumes that if you can’t see it, it can’t see you)…” Douglas Adams, The Hitchhiker’s Guide to the Galaxy

I (Tim) made a mind-bogglingly stupid move this week. I was out grabbing lunch, when I noticed someone I knew at one of the tables. He was engaged in a conversation and didn’t see me. And I used that as an opportunity to scuttle to another part of the place where a wall would be between us. If I couldn’t see him, he couldn’t see me.

Now, this guy is pleasant. Funny, interesting, a good guy. But I didn’t want to interact. Not so much as to go by and say a quick “Hey.”

One of care giving’s side effects is to send my introversion off the charts. When I’m not doing all…

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Breaking the Stigma of Mental Illness – Yom Kippur 5777

Compelling thoughts and a prayer at the end that includes caregivers. Your compassion for those in your care is precious.

Rebyehoshua

There is a town in Belgium called Geel (Hyale), with a remarkable 700 year old custom of compassion.

Its origin lies in a legend about a seventh century Irish princess named Dymphna.  When Dymphna’s mother died, her father went mad, insisting on marrying her.  Dymphna fled to the continent.  When he caught up to her in Geel, he beheaded her.  Dymphna was sainted, and pilgrims began visiting the site of her martyrdom in search of miraculous cures, especially for mental illness.

A church was built in 1349, and later, an annex to house the visitors.  Eventually, the townspeople began to welcome the mentally ill relatives of pilgrims into their homes as “boarders.”  For the townspeople, it was an act of charity to open up their homes.  “Boarders” stay with their hosts for long periods of time, as many as fifty, or even 80 years, becoming part of the family.

At…

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Here a Friend, There a Happiness

Caregivers are “Blooming Idiots” who tend and nurture while being sliced and diced by thorns. Beauty grows no other way.

Raising 5 Kids With Disabilities and Remaining Sane Blog

two-friends-hugging-clipart-2-girls-hugging-as-best-friends

My daughter, Marie, was severely abused as a toddler and young child. She came to live with us at the age of 7 after being found wandering the streets barefoot at 2 am carrying her infant brother looking for formula for him. The effects of the abuse were immediately apparent. She couldn’t stand to be touched, and would cower under the table if she felt threatened. She was angry all of the time and refused all attempts at affection. (When she was with us for a few years, she finally allowed me to give her a “fist bump” as a way of showing my love for her, a love she certainly did not reciprocate because she didn’t know what love was.)

Posttraumatic stress episodes were explosive and frequent, and required restraints and hospitalization. She had superhuman strength while in the throws of PTSD, as I am sure the EMTs and…

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