We’re Gonna Die for Our Ignorance

25 Jun

Have you heard about the tragic life and death of Alex Spourdalakis?

A fourteen-year-old with autism who was hospitalized and had a strong campaign for his care being spear-headed by his mother. I signed the change.org petition. I was outraged, I was upset.

But nothing compared to hearing the tragic news that Alex was murdered in cold blood by his mother.

Yes,  you read that sentence correctly. Murdered. In cold blood.

But even worse was some of the reaction, the reaction that said it was understandable, okay even, that Alex’s mother would murder him. Because he had autism.

And that is BS. Is autism a walk in the park? No, certainly not. Was the treatment of her son often wrong and awful? Yes, yes it was. Do either of those things justify murder? No, they do not.

As was said best in a post on Autism Hwy:

…some have decided “others” are not entitled. Like young Alex Spourdalakis. Judging by the things I have read and seen some have determined that Alex would still be alive had the “system” not failed him. Had his mother been given the “supports” she needed. WHAT?

The ‘system’ that failed him was his preeminent source. His Mother.  She is the one that seeks out the formula for Alex’s comfort levels as a “severely Autistic”individual. It is a complicated task, I know I travel that HWY everyday with a growing 14 yr. old “severely” Autistic teen.  Dorothy Spourdalakis decided that he deserved death.  When is it ever appropriate for one human to decide another’s mortality?  Never. There are no qualifying answers OR mitigating circumstances. Just stop trying to pretend there are.

It sounds unfair to some ears but it is true. As parents of children with autism, we are their pre-eminent source of everything. And no matter how we are treated, no matter what respite we don’t qualify for, there are NO “mitigating circumstances” that justify our mis-treating our children or murder of them.

And for those of us fighting for awareness and acceptance for our children, this type of behavior should be especially inexcusable. While we are fighting for our child to have an equal opportunity to education, housing and everything else, when one of us goes and murders her son…well, if his mother felt his life is valueless, how should the rest of society view him? With compassion and acceptance or the same way his mother did.

There cannot be a complacent, “well, yeah, she murdered her son, but he was low-functioning,” attitude amongst any segment of society. No, what there should be is a complete intolerance of that attitude. My child can be extremely difficult, her behavior can be embarrassing, she still wears diapers a week from her seventh birthday, but none of that means I can go and murder her because the her diagnosis also means my life will  be more difficult.

I feel badly that Dorothy Spourdalakis endured such hardship as a mother and was denied over and over again services her son needed, but I cannot abide the murder of her son as an acceptable answer to that. And I cannot abide any other human being who feels she was justified in her actions.

Sometimes it’s not autism…it’s just being a kid

24 May

We’ve had a rough week here at Chez Castle. Both the Duke and the Earl have been sick. Allergies, asthma, yeah, it’s ALL going on here. And the King has had a headache all week. Something bordering on a migraine. So, yesterday, the boys were home, as per the norm for this week. And the King called in sick waking up with throbbing in his head and needing to rest it off desperately. So, I got the Princess up and ready for school. 

Now, she knows when her uniform gets put on that it means she is going to school. And the King now parks his car in our garage, so there was nothing to suggest to her that he might still be home when she got up. Except…except she opened the bedroom door to look for something where he was sleeping and discovered he was home. I put her on the bus, she went to school. There was no drama, no protest. 

Around 10:15 I got an email from the Princess’ teacher. It simply had her name in the subject line. I opened it to read they were concerned she was not feeling well. During snack time (her favorite time, well, okay, any time that includes food is her favorite) she had retreated to a small cot in the classroom and was wanting a blanket. No, this is not typical behavior for her, thank you for asking. And she crawled into a teacher assistants lap and wanted cuddles, also atypical. And this teacher assistant she likes,  but when she wants cuddles, she typically goes to the teacher or other TA. They had taken a temperature on her just to be safe and no fever. But just a heads up, she might be coming down with something. I told the King who said, after she had been at school three hours, we could go get her (three  hours counts as a full day with early-out not an absence). 

So, we arrived at the school about 3 1/2 hours into the school day as her class was returning from the playground. As the teacher assistant walked her up to the office, the Princess had a slight spring in her step.  The plot line was becoming slowly apparent. As I walked her outside, she looked for our car and upon seeing her father in the driver’s seat, she began skipping. The jig was up. She knew how to play sick to get home to be with Daddy. No autism necessary, she could manipulate us with the best of them! Teachers and parents alike! I have to admit, it was a clever plot that took some planning on her part!

Little girl…you holding out on me??

21 May

The Princess has always been able to take off her socks and shoes. Always. Putting them on (the socks especially) well, not so much. 

Socks are an interesting sensory experience. The seam has to rest on top of her toes. They have to be pulled all the way up, no folding them down.

Yesterday I put a pair of tube socks on the The Princess. As usual we went through vocal protest, ugly looks (her not me) and splaying of the toes meant to convey, “this sucks, stop it now.” Because PE is on Mondays, we put on sneakers as opposed to crocs, her usual footwear of choice.

After putting her dirty pjs in the laundry, I walked into the living room to see shoes and socks off. All the way off. I was not pleased. I began to walk over when I noticed something. She had in her hands, crew socks. They were hers and had fallen out of a clothes basket onto the couch. I stopped and watched carefully as she put them on, adjusted them to her perfection and then put her sneakers back on.

I can understand how the tube socks are difficult, but little girl, you are holding out on me on your ability to besock and shoe yourself. 

My daughter is Mikaela Lynch

20 May

Today autism bloggers are joining forces to honor the life and love of Mikaela Lynch, the nine-year-old California girl with autism who went missing and was later found drowned near her home. It is with even heavier hearts that we post today as we have also lost Owen Black in Florida. Please join Sunday at Adventures in Extreme Parenthood today as we honor a beautiful little girl we lost much too soon.

I watched in horror last week as events unfolded in the California search for Mikaela Lynch. All I could think is, “This is my daughter. My Princess.”

Like Mikaela, my daughter is non-verbal with very little modified sign language. Like Mikaela, my daughter wears diapers. Like Mikaela, my daughter has been known to take her clothes off. Like Mikaela, my daughter is drawn to water. The Princess is not a text-book eloper, she prefers to stay near those she knows, but she does have her moments. And the adage, “when a child with autism goes missing, look in the water” rings dangerously in my ears.

And my daughter has gotten out. One time. I had to go to the bathroom. The front door was locked at the dead bolt and the doorknob. And like that, she had gotten out. A neighbor driving home knew her, her husband stopped the car and she got out and walked her home. It can happen in less than a minute. It can happen to anyone with a typically developing child or not.

When a tragedy occurs the media blames the parents. “Obviously they are delinquents as they KNEW this child has autism and yet they directed their attention away momentarily. They went to the bathroom; went to sleep at night; looked at their other child; blinked.” But this can happen to the most vigilant parent. Even with multiple fail-safes in place.

The other thing both the media and parents everywhere do during these tragedies is say, “how can we prevent this from happening again?” But here we are dealing with autism and the answers are as varied as the individuals.

Here is what our family is doing to ensure our Princess has the best chance possible to avoid tragedy like this one:

1) Adaptive swimming lessons–perhaps one day we can get swim lessons required to be covered by insurance or by an autism task force so they are affordable for parents. Children with autism are drawn to water, we know this by the disproportionate drownings in children with autism. At least with swim lessons, these children have a fighting chance.

2) Making The Princess known in our neighborhood. She was returned home because a neighbor knew her and knew she had autism. If the community knows a child’s name and knows said child has autism (and may not respond to said name or be verbal etc) there is a much better chance that tragedies can be averted.

3) Investing in Project Lifesaver or similar technology. The Princess is FAST when she sets her mind to something. This type of technology is invaluable to a family like ours.

4) Being in contact with local law enforcement. The Princess’ school (along with all elementary schools) was given a student resource officer from our local sheriff’s department after the tragedy in Newtown, CT and he has gone out of his way to meet the special needs students and families and familiarize himself with autism and various other developmental and intellectual disorders. In this way, he has helped us to realize that we need to be familiar with local law enforcement and help ensure they are educated to work with individuals like autism and better understand their unique challenges. We cannot assume they will be able to help in a situation they are not trained nor prepared for and we cannot just assume someone else will do it. We must do our part too.

On Wednesday, I stopped in grief and cried. Mikaela had become The Princess to me. And when I got the Princess off the school bus, I looked into her big brown eyes, her smile with big adult teeth pushing baby teeth around, her crooked King-styled bangs, and I kissed her and held her tight. I told her how much I loved her. And my heart ached that in Clearlake, CA, another mother could never do that with her sweet girl. There were no words for the grief that coursed through my body. No way I can explain to someone without a child with these challenges the pain of the knife twisting in my heart over and over, deeper and deeper.

My fear, my sadness, my anger, my grief, while very real, is nothing compared to that of Mikaela’s parents and now of sweet Owen‘s family. In less than a week we have lost two children, on different coasts, to autism related behaviors that led to drowning. My heart is broken all over again. These children are my children. The Princess is one of many, many children you could see on your evening news and think, she could be ‘mine.’

Mikaela, Owen, we love you. We will not forget you or your families. Your beautiful smiles, your love strengthen and embolden us.

Holidays with a child with autism

1 Apr

Yesterday was Easter Sunday and last week began Passover. But religious or not, if you have a child with autism yourself, or one in your family, sooner or later, you will have to deal with holidays and how to make them better for a child with autism or at least survivable for everyone.

This past weekend my family was invited to a Breakfast with the Easter Bunny and Easter Egg Hunt. Last year, the Princess had an egg hunt at school with kindergarten and first grade classes which was great except she opened eggs and dropped candy on the ground and took eggs out of other children’s baskets.

We did the breakfast the entire family, and it was great. The pictures with the Easter Bunny, well, not quite as expected. The Princess was scared of the man in the bunny costume. The Duke and the Earl were also less than enthusiastic, which proves something I’ve believed for a very long time, the Easter Bunny is all kinds of creepy. But anyways, when I explained to the photographer why the Princess and I were hanging back, he was immediately empathetic. He was kind and went above and beyond to explain that we could do things at her pace and also take a picture of just her with the Easter egg border if we would like. His exact words, “we can accommodate.” That was a definite high point of this holiday weekend.

The egg hunt only the Duke and the Earl attended. The King later told me that although he wanted the Princess to take part, he was glad I vetoed the idea because the sheer number of people was more than she could handle. He felt overwhelmed by it. Even outdoors it was crazy. And it was done in a park on the InterCoastal Waterway. And if you aren’t aware yet, water is a very common attraction for individuals with autism, it’s often said if a child with autism goes missing, check the water first. The Princess, in general, does not wander, but she has a magnetic interest in water for sure.

But in moving toward acceptance, many parents, grandparents, aunts, uncles etc want a child to have similar experiences to what they did growing up and events like an egg hunt, trick-or-treating, sedar meal, or anything else holiday ritualistic CAN be done. Here are some tips if you want to attempt an activity and never have before or are very nervous by the prospect. They don’t guarantee success but are worth a shot!

1. Practice! Have your child do a mini-egg hunt in the back-yard a few times ahead of time. If you can recruit typically developing kids to join you, absolutely do. Same with something like trick-or-treating, ask neighbors or family members who are sympathetic and practice wearing a costume, walking up to a house, ringing the doorbell etc. It truly can make it easier than just throwing the child into a new experience at the actual event.

2. Set expectations that are realistic for  you and your child. Don’t let it enter into your head that it will be a meltdown free day, if it is, great. But don’t expect it. Many parents bring business like cards to hand to other parents and kids in case of an “event” big or small. Also, in setting those expectations, be honest with your child. “Mama doesn’t know how many people there will be here today, there may be lots and lots,” is better than “the crowd last year was 20 so… .” Realize that if something does end up happening, it may not be your most stellar parenting moment dealing with it and that’s okay. Cut yourself some slack.

3. Prepare any guests or family members in advance if you can of how you plan to handle any situations if they arise. If you feel you may need to leave suddenly if things get out of hand, let people know you’ll need the car keys or help with removing your child. Nothing is worse than people dispersing, your child having a meltdown, and you have no help and no way to beat a hasty retreat.

4. Try to limit your total activity time. Remember social interactions can be VERY taxing for  your child. If he or she is expected to sit long periods of time (think a church service or sedar) without any of his or her comfort things, realize you may not be able to go through the entire event. Or for events like trick-or-treating, limit to the houses on your street or five houses then we can go home. It will allow you to have the experience but not stress your child out.

5. Make your own. For many parents there are just too many unknown variables to take their child to a holiday celebration.  And this can be especially true for parents of children on a special diet. Sometimes it is just best to create your own. We have friends who host “autism-friendly” gatherings of parents and kids to celebrate various holidays and it is nice to be around other families who “get it” and aren’t offended if you have to leave suddenly or your child has a meltdown. And sometimes it may need to just be your child and your family. That’s okay too. I have to remind myself even when it comes to the The Duke and The Earl that it’s their childhood, it doesn’t have to be a re-creation of mine.

What are some tips you have learned from holidays and your little bit of autism royalty?

 

Autism Acceptance Month Day 1

1 Apr

In moving past awareness is acceptance. Many people are aware, and while more should be and need to be, almost all those aware and certainly all those unaware, must be focused on acceptance. In that vein, I will spend the next 30 days devoting to blog posts to help those who are working towards acceptance to make another step in that direction, and hopefully spread some awareness to those who are not as well.

1 in 50 folks, if you haven’t met someone with autism, you just haven’t met that person YET.

This Happened Today While the Whole World Was Watching

19 Mar

Showing love in this way to those in our community who are different on such a public stage. Hopefully the world was watching and learning and acceptance of our children has made a huge step forward.

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