In The Matter Of Days…

3/18

The amount of tears, silent tears, that I’ve cried at my desk over my child are too numerous to count.

I just made the hardest call I’ve had to make so far as J’s mom. A call to his doctor to discuss a behavior medication solution. A call to ask for help handling my child. My child that has finally gotten too big for me to handle alone without the assistance of another adult when his aggression behaviors overwhelm me. It was a call that had to finally be made after weeks and weeks of scratches and bruises and scars from a child that I love so damn much that it hurts but that I am unable to help.

I can’t continue to be his punching bag. I can’t continue to have him come after me when he doesn’t get what he wants because he can’t or doesn’t know how to manage his emotions. I can’t be afraid of my son.

3/19

J went back to school today. I’m glad that Spring Break is over, but I would really love to be over his behavior challenges…I literally had to stop writing this due to another behavior incident.

It’s really starting to get to me. I think my body is reacting very negatively to all this stress. When I’m with J, these behavior incidents almost take everything I have to get through them. I’m always on the ready, on the defense, waiting for what I say and/or what he doesn’t get to throw him into being a combative kid.

This evening escalated quickly with negative behaviors. He just wasn’t happy about anything we did or didn’t do and he was tired. This resulted in lots of hitting which led to an early bedtime. It was almost 20 minutes of hell, that left me exhausted and Lance ready to roar.

We got through it though, even with tears but also with a few smiles and laughs at the end.

Plus we received some information back from J’s doctor about trying a medication to help calm him to assist with his behavior issues. They just need to make sure it won’t interfere with his seizure medication. Hoping we can get this figured out soon as we are truly in need of a reprieve.

3/20

This morning was pure hell! Woke J up and he was instantly angry with me. He was angry for being woken up, for being unable to understand his own emotions maybe.

I finally got him into the bathroom but because I was expecting us to follow our normal routine and he wasn’t, the aggressive behavior started right up. It resulted in me bawling through his hits, scratches and yelling at me. To some degree I think it shocked him to see me like this, in turmoil and pain, because he kind-of did back off. Or maybe it was just the fact that I finally finished getting him ready so he was able to leave the bathroom.

I was thankful the rest of the morning went okay. But I did have another session of tears after J left for school. It was definitely needed; to collect myself, to let it all out, to be able to move on.

Coming home was kind-of an anxious trip, wondering how this evening would go compared to the previous night. I was shocked with how it all turned out. We had smiles and giggles again, a few attempts to hit but those were quickly de-escalated. It felt so good to have an easier night. I wish I could figure out what is or what has been troubling him so we could have more nights like this again.

We are starting his new behavior meds tomorrow. They are supposed to help calm him, keep him more relaxed and less anxious. I also got a new consulting appointment for a behavioral therapist, even though it’s not until mid-April it’s in the right direction. And I reached out to his school resource teacher for additional assistance, as any help is appreciated. I also made a wellness appointment with my doctor, gotta take care of me too.

3/21

A much better day with J. I had one small sock fiasco this morning but I was finally granted permission to change his socks.

Started his new meds.

He took a morning nap at school but being up since 4:30am might have caused that.

He was also very quiet, calm and so tired this evening to the point that his eyelids where drooping. He even sat with me, snuggled too, which hasn’t happened in weeks. There was no aggression of any kind.

He was quite a different kid tonight.

We’re watching him closely, making sure his new meds aren’t the result of all these changes but possibly due to his self imposed early wake up call. We don’t want him to turn into a zombie. I’m anxious to see how the coming days go. We would love a calm and collective J but who remains himself.

3/22

Another better day with J. A typical morning routine, one that included working to get him out of bed but didn’t include any aggression. He had another good day at school, with no nap, even though he was up at 4:30 again. We did unfortunately find out that he’s had some aggression issues at school this week, but they are only seeing it when he gets tired or upset at something. I am again thankful for his school support staff and their understanding.

We had another good evening at home with no aggressive behaviors but he sure was tired again. However, that worked out for my benefit as he curled up with me and fell asleep. I don’t care how tall my child gets, I will always be willing to curl up and snuggle with J. Even though he can barely fit in my arms and lap for the time being, any chance I get to do that is a plus.

Again, I’m not sure if the new meds or the early wake up is the reason for his tiredness but I’m going to assume it’s a little of both. It will take some time for his system to get used to the new meds. But I am happy with the change in behaviors thus far.

3/23

Another good day with J. We took him out to lunch and for a shopping trip with only one minor hiccup. Came home for a movie and then J took a nap.

On the way to my folks is when the issues started. Pretty sure he thought we were going to leave him once we got there like we did two weeks ago for our date night. He started acting out in the car and once we arrived wouldn’t get out which lead to him hitting again. It didn’t help that he had an accident on the way over so he was already anticipating that clean up and change of clothes.

After about 30 minutes of finally getting him out of the car, into the house and changed, we both were ready for a beer.

There was one more minor challenge after that with his iPad but that was over quickly.

The rest of the evening was good. I’m happy that though he still went to hide in Papa & Ma’s bedroom (his chosen space), he came out from time to time to check on us and see what we were doing.

It’s all about one day at a time.

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An Autism Parent Poem

Being an autism parent is exhausting.

I’m exhausted.

Wondering if I could have done more

Or if I should’ve done less.

Why?

Why is it so hard?

I hate to admit this.

I hate to admit that I need a break.

A break from…

Being a parent,

Being an autism parent,

Being an adult that has an abundance of worries.

Just for a day or two

Or five.

Jamaica.

But tomorrow’s a new day.

A time to try again.

After a good night of sleep.

With the help of a glass or more of

Wine.

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.

‘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.

So Beautiful.

I love watching J, whether it’s reading his books or watching his movies. How his face changes so dramatically while he looks, watches, ponders and analyzes what he is seeing. It’s his eyebrows, his mouth along with his eyes that carry all of his emotions so fantastically.

His eyebrows when they are all crunched up or in high arches for what he is pondering or getting excited about. His mouth with a smile or a large O for what is bringing him happiness or from the not knowing what is about to happen. And then there are his eyes that crinkle with myth and laughter which also makes his cheeks go quite round with happiness or when they fill with tears from a mistreatment or injustice that is being done to one of his beloved characters.

His face is truly his communication device; happiness, amusement, excitement, indifference, sadness, tiredness, despair and anger all reside so easily and true without complication on his little face.

There’s also other communication triggers to watch with J that show his emotions so readily. The flapping of his hands, the shaking of his head, the wiggling of his toes or the sprinting from the room because his anxiety about what he is soon to see for the hundredth time gets to the better of him.

There’s also the reaching for our hand to hold, the covering of his eyes or the request for a gentle head squeeze to help him regulate his emotions that may have become too much.

It has taken us years to understand how J’s emotions show themselves and even though we have learned a lot, there is still so much we are learning every day about how he sees the world around him, how he then interprets it, and then how he displays these feelings.

Watching J is a very fun hobby of mine, something that will never get old. My absolute favorite emotion, which no human being should never not be able to smile at, is J’s simple head thrown back belly laughter. It is absolutely contiguous and so beautiful.

Santa?

It’s not that I don’t believe in Santa, I do with my whole heart. I love Santa and what he represents; the spirit of the Christmas season, the joy that comes to the faces of both little kids & big kids, and all the excitement that is to be had for the jolly old man. Yet for our little family, we are on quite a different path of celebrating Santa than most.

J has never been excited for Santa or for him to come Christmas Eve. I’m not even sure he truly understands the concept of the Christmas season, let alone Santa. To him it’s just another day of getting up, getting ready, eating his pop tart & drinking his chocolate milk while watching PBS kids.

J has never wanted to sit on Santa’s lap. He’s never wanted to visit him or to tell him what he really wants for the big day. It’s rather a screaming fit if we go anywhere near the white bearded man.

J has never wanted to write a letter to Santa or has even asked us to help him do so. No North Pole letters coming from our home. No letters explaining how he’s been good or a list of what toys or books he wants this year.

In fact, J has never been able to show or tell us what he’d like for Christmas, or even his birthday (which is also this month). He’s unable to communicate his desires for gifts and again, I’m pretty sure he doesn’t understand the point of presents. It has taken him years to be okay with unwrapping a gift and even now he can only partake so long due to sensory issues. It’s gift bags for us. All I really want is to find that one gift , just one, that when J sees it his faces lights up with excitement. Maybe this will be the year.

So all of this Santa business isn’t J’s cup of tea and even though our Christmas traditions are nowhere close to what we experienced growing up, we’ve tried to make the holiday season special just for us. It hasn’t been easy, but we focus on the aspects J does enjoy instead of the ones he doesn’t. The Muppets Christmas Carol movie is a staple in our household, walking through all the Menards Christmas decorations multiple times on our visits is a must, and enjoying the heck out of our new Christmas Santa clock tower that lights up and plays music is a daily if not hourly occurrence (thank gosh is has an off switch!).

Though we don’t celebrate Santa as I enjoyed doing growing up, our ways of celebrating are just as important & special.