Sunday, April 2, 2017

World Autism Awareness Day

Ok, let's see.

Hayden came back today from several days at his dad's to have a huge meltdown. As he always does after being at his dad's for several days. And all Joseph and I can do is wait for it to happen and try to support him as best we can. He was throwing things all over the place, yelling and screaming, trying to hide somewhere from himself because he gets so upset that he just doesn't know what to do. He can't verbalize that he just needs a break and some time to think. I would post a video, but he's embarrassed and doesn't want me to, so I am going to respect his wishes.

He has become aware enough to know it's not typical behavior, but not aware enough to always control that behavior. Through ABA therapy and Biomedical Interventions, we're making huge strides, though, and he is much improved from even just a few months ago.

We got him calmed down by giving deep pressure and some ibuprofen. He's now outside playing with other kids. Often this causes another meltdown by the end of the day, because he becomes overstimulated and overtired. So there's that to look forward to. Just another day living with autism. Although it was nice, when I checked on Hayden, for the neighbor to be surprised that he has autism, and to say that we were doing well with him.

If you want to throwback to another rough day in our lives with autism, this is a good blog post I wrote about the time he broke his arm: http://hope-lavender.blogspot.com/2012/10/broken-bones.html

Sometimes people say, "it's not that bad. At least it's not (insert diagnosis or life problem here)." I'm not sharing to say we have it worse off than anyone else. I'm sharing to show you what our lives are like. Some days are great. Some days are ok. Some days are just plain awful. You don't really know what the day is going to be until it happens, though sometimes there are clues, like full moons and holidays.

So I share not to complain, (because frankly I think Joseph and I are holding down the fort pretty well!) but because I want people to be aware. I want you to see a child in a meltdown in the store and, instead of thinking, "That mom needs to discipline him better," maybe think, "I should give his mom a smile and ask if I can do anything to help."

Sometimes people say that Autism Moms seem bitter. That we're not cheery enough about the situation. I think some of us are just trying to navigate a life that maybe isn't quite the life we had imagined for ourselves. We are trying to make lemonade with our lemons. If you have any to spare, we may need to borrow some sugar. And if you have it, a helping hand.

What I really want people to be aware of on Autism Awareness Day is that people with autism need more help than they're getting. Services in school have to be fought for, and even then are often still lacking. Jobs aren't available for young adults once they leave school, and the training is sometimes hard to come by. Biomedical therapies are needed and yet many families are unaware of what they are or how they work. They're also costly, and grants are hard to come by, so parents must pay out of pocket. ABA therapy can be extremely expensive, and not available in all areas, so some families must do without.

Parents are exhausted and tired of trying to prove themselves to everyone-- that they're trying their best, that their child isn't a 'brat', that they have their sh*t together (when often we're not sure either!) and that we're really sorry that we're late (AGAIN) to whatever it is we were supposed to be on time for, because our kid couldn't keep it together today. We're tired of convincing ourselves that tomorrow will be better, when sometimes we're not sure if it will be. We're tired of sleepless nights and talking about poop. Comforting siblings who don't understand, and buying special cupcakes on a day's notice. Doctors and therapies and conferences and support groups... Autism is treatable but it's a long journey involving a whole lot of work. There are no days off. There's no play book. And so what Autism parents really want at this point is 10 minutes to ourselves and a glass of wine.

This is what Autism Awareness means to me. It's probably different for each family and that's ok. Where I see a need is that people with autism need services and respect. Families need help and support.

I want you to consider organizations like tacanow.org, autism.com and generationrescue.com if you are one who likes to give to charitable organizations. Autism Speaks has too much overhead, and help isn't getting to those in need.

I want you to be aware that 1 in 45 children in our country is affected. It's important for all of us to be aware of this problem and how we can make it better for everyone.

There is hope for autism, and that keeps me going. Below is a picture of Hayden after our long trip to the zoo. His sister's crying is a trigger for him, and often sends him into a meltdown. He's been working on strategies for this with us and his therapists. So on this day, when the rain was scaring her and she began crying in the car, instead of melting down, he asked if she wanted to hold her hand, to make her feel better.

Awareness to me also means: There is Hope.

Sunday, March 5, 2017

Bully Book

At Hayden's previous school he had a bully. This child was in his class as well as attending the same before and after school daycare. He withheld a favorite toy from him to watch him get upset. He kicked him in the groin. He created a game at recess called "Make Hayden Mad." The kids would get him upset so that he would act out, and then they would laugh.

Hayden told the Principal that this child was his "mortal enemy."

Hayden has had previous experiences with bullying. I wrote about once instance in this blog post at Chuck E Cheese.

A kind online friend had just written a book for kids, to help them cope with bullies. When she heard what happened, she sent him a copy!

Hayden has been working in his Bully Book and I wanted to share a few pictures here.






You can purchase The Bully Book on Amazon!  Thank you so much, Brooke, for helping Hayden deal with bullies!


Monday, December 19, 2016

Autism at the holidays

So poor Hayden has really been holding it together. He's had perfect days at school for over a week, which has not happened all year. Today (the second to last day of school) he had a party in the afternoon (change and chaos), then after school kids were cheating at a game at daycare (he HATES when kids cheat.) Yet he still kept it together. Joseph picked up the kids and took them to the library. Hayden couldn't find much that he liked (disappointment upsets him too). 

When he got home and I told him that he needed to do his homework (which he didn't understand) before screens (just like every day) he lost it. He threw Rylie's Lego advent calendar, which resulted in her crying (he HATES crying), which made him even more upset. Then he realized he shouldn't have done it, which made him feel guilty, and also afraid. He's been afraid that his behaviors will put him on the Naughty list and Santa won't come. Joe had to hold him for about half an hour because he was so upset. This doesn't happen often at home anymore. 

It's heartbreaking to me that my son would think he's on the Naughty list. No, he shouldn't be throwing or hitting or swearing. But these are a result of his disability, and his behaviors have improved so much in such a short time. For the most part, 97% of the time,  he is sweet, cuddly, kind, funny, and creative. He has come to a greater realization lately that his actions affect others. He offered a child without a coat at recess his hat (that's awesome Hayden but please don't do that again-- because lice!), offered his therapist his gloves when she was cold, and has been repeatedly saying "I'm sorry if that upset you" to me in case something he said was socially unacceptable. He has trouble focusing, and has to focus all day to get it all right. He really tries. He really, REALLY tries. To survive in a world that doesn't quite get him. And here's Santa / me telling him he'd better work harder or he won't earn any presents. Something every other kid doesn't really have to worry about. He lay in bed tonight and repeated what he has to me so many times in the last few weeks:  "I'm sure I'm on the Naughty list, mom. I'm not getting any Christmas."

I decided today that that's not fair. 

Our elf Tinsel leaves notes from time to time, so tonight she let Hayden know that it isn't about the mistakes. It's going to be about good deeds from now on. He can earn kindness by showing kindness to others. Hopefully this will be a life lesson for him, and his sister. God doesn't care if we mess up, as long as we tried. He forgives, and Santa will forgive. If we live each day with good intentions, and try to help people in our own ways, we have met the criteria for being on the Good list. 

Thank you, Hayden, for teaching me once again. I only wish for your sake I'd learned this one sooner. ❤️


Sunday, October 23, 2016

Three Years at Cornerstone

Three years ago I left education to support families living with autism. What an amazing journey it's been so far! And it seems like it can't possibly be three years already. I realized that I'm still teaching and mentoring, but in a different capacity.
There have been parents who couldn't afford diapers; I've shared that diapers are free to kids with a disability, through Medicaid. I learned this from another mom at the center shortly after starting.
There have been families who've struggled to afford therapy. I've shared that they should sign up for the Waiver, which will give them Medicaid, which can help with copays and deductibles. I learned this from working at the center.
There have been parents who asked if they caused their child to have autism. I've explained that they did not, and assured them that they're good parents.
There have been more than a few parents who told me they haven't told their family about their child's autism diagnosis, because it is a taboo in their culture. They would be shunned. I told them I was sorry that they had to experience that, and that they could lean on the other families at the center for support if needed. I've created closed Facebook groups for them to communicate with each other, share ideas and ask for help in a safe environment.
Parents have cried after meetings and hugged me, expressing that they've never received so much (or any) support.
There is so much more. So much. When I started there were about 60 kids at our two centers. There are now around 125 at three centers. The growth has brought more learning, more experiences, more memories.
It has been such a gift to serve others in this capacity, to give back and help others as I was once helped when I was new to this world. I'm so grateful that Cornerstone's owners saw something in me, and saw a need that could be filled. It's been such a blessing to be a part of this company for three years and I look forward to more to come.