Today

01/23/19

#1. I’ve changed my child 3 times due to pooping incidents. He’s not yet toilet trained and also unable to keep his hands out of his pants when he goes number 2. Today there is an ever present back ground scent of shit. Thank gosh for Clorox sprays and candles.

#2. My child doesn’t want me around him at all. I’m lucky to get a kiss before a firm verbal ‘bye’ is given. There’s no reading together or playing, but because of #1 I have to be just within eye sight cause even if I leave him for a second too long there’s the high probability I’ll have a fourth incident. I told him to stop pooping today, he reminds me of when Chris Traeger on Parks & Recreation looks in the mirror to tell himself the same thing when he has the flu.

#3. Physical aggression is so tiring which is probably why I’m not too broken up about #2 today. If I do end up out staying my welcome and then asking for something that receives a “no” answer, it is the most terrible, awful, horrible, disgusting word to be uttered. If I’m not quick enough to have a distraction ready (which today I’m not because of not being allowed around him and his things), then the aggression pours from him like a water main break; strong, forceful and everywhere on my person. It includes bites, scratches and slaps, usually to the face.

The unfunny thing is that once Lance gets home, J will completely do a 180 from his experience vs. my experience. There will be giggles and laughter, reading and playing. The kid just loves his dad, I do too. Maybe our next snow day will be better.

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‘Simply Horrific

Autistic children strapped to a radiator in a mental hospital, 1982 Romania.

This picture made the rounds within the autism community this past week. There’s discrepancies on when and where it was taken but the fact is that it was taken, there’s no discrepancies about that.

Within the community it’s been described as ‘simply horrific’, ‘shameful’, ‘disgusting’ and most are just outright appalled by it. And in the same breath those in the community react by sharing their wonderful stories about their loved ones who are autistic. How they are kind, loving & amazing children and grandchildren, how they are loved exactly as they are.

There are others unfortunately who make jokes about this picture; I assume they joke so they do not have to feel a true emotional reaction to it.

When I see this picture, my heart literally hurts and the sadness I feel for these children and all others before & now that are mistreated is inconceivable. Adults should protect all individuals with special needs in a safe, secure and caring manner, not in this despicable, ugly, terrifying, depressing way.

Though our society has started to recognize these atrocities and become more aware, there’s still a long way to go for true acceptance, understanding & support in our world. Because the reality is that there are those who don’t recognize individuals with special needs as human beings.

The disable children locked up in cages – 2014

Straightjackets and Seclusion – 2017

Autistic boy 5, strapped into chair by ankles and waist at school… – 2018

School strapped autistic daughter in chair – 2018

Shut away and threatened like animals… – 2018

Please read and share. True acceptance for all whether with special needs, development delays, sensory behaviors, disabilities, etc., comes from acknowledging that people can be different but should be treated no less than how you or I want and should be treated. We’re all human beings and in the end we all want the same thing, to be happy, loved and cared about. So please be kind.

NEEDED: Space

Previous winter breaks for our little family have been pretty stressful. The change in routine upsets the natural order of our schedules and since it is different, it is to be challenged by J. It’s basically an extended weekend by 14 days but with way more places to go, people to see and things to do. It has more sensory input than any other time of the year. So more behavioral issues, sleep pattern changes and mood fluctuations are to be expected and not to be held against someone with autism, our J.

But this winter break, our J has really shown us how much he has grown in the past year, figuratively but also literally. It may have been more noticeable this year because unlike previous years our winter break was less stressful and more home bound than ever before. J showed us that he has truly become comfortable in his own skin. His personality has been more prevalent than ever before. He’s truly grown into his 8 year old self.

How? He’s been wanting his own space, no more needed or wanted attention from Mom & Dad, unless at his request. He prefers to sit on the couch by himself or at the kitchen table with no company, even escaping to his bedroom when he wants self isolation. All in order to read his books in peace. From one book nerd to another I completely understand.

But for an 8 year old it sounds lonely, doesn’t it?

It definitely took us by surprise when it first started happening. At the beginning of winter break there were days that were a little to quiet as he requested his own space. As the break proceeded there were days that I was going to his bedroom every 15-20 minutes to check on him. Days that Lance was doing every goofy thing he could think of to bring him out of his room. Days that we’d turn music on or keep the TV on with Parks & Recreation to entice him to stay downstairs with us. And it might be just another phase but if not, that’s okay. Like I said before he is growing up and he’s not likely to stop doing that anytime soon, both figuratively and literally.

Luckily we’ll all be getting back to our routine in a day. We’re excited for Jax to have all his daily interactions again with his peers and school support team. We’re looking forward to hopefully having our regular interactions in the afternoon without him escaping to his bedroom. It might start off rough and take some time but again this is a change to the routine he has had for the last 2 weeks.

Change is big for those with autism and needs to be supported & understood, not discouraged or discredited. It’s not a negative reflection on you as a parent when unforeseen personality changes take place with your child. It is a reflection on you as a parent with how you deal & handle it.