Wednesday, May 24, 2017

Hayden turns 11 today!

11 years.

For 11 years Hayden has been fighting to get what he needs.

He has struggled to communicate, first with any words at all, and currently with the most socially appropriate ones.

He has struggled to make and keep friends, though currently he says "I got Thomas, Austin... I got tons, I can't really tell you all of them."



He has struggled to get a fair education, in nearly every aspect. For example, he has been left alone on the school bus in the cold. He has been put in seclusion and unsafe restraint at school in the past, without us knowing. He has been suspended (I would argue unfairly) from school multiple times. He has been bullied (punched and taunted) repeatedly.

He broke his arm at daycare and no one noticed for the entire day.

He is often offered food that he can't eat and has to decline. Sometimes that means that others eat treats while he has none.

He continues to struggle with things his peers are able to do. He also sometimes has trouble controlling his anger.

And yet despite all he has to overcome, his outlook on life is (usually) one of positivity. He is kind and curious. He is kind and loving and thoughtful. He wants to be independent. He wants to be the same as everyone else.



Last week his teachers and therapist had this to say about him:

"Hayden is a very fun and loving young boy whose smile and laugh just lights up the room! Everyone who works with
him enjoys his company and he sure knows how to make people smile! Hayden is able to learn very quickly and picks
up information easily. He enjoys his teachers and peers and is able to tease and have fun with each other. He has
improved tremendously since the beginning of the year. He has truly been a JOY to work with this year!"



"Hayden is currently completing all 4th grade level work in the general education classroom with behavioral support. Hayden
does not need any academic support aside from being redirected when he gets distracted or when he might become
frustrated over an assignment or peer interaction. He gets all As and Bs on his report card and has average to above-average test scores."

"Working with Hayden has been, hands down, one of the best experiences of my ABA career. He is a hilarious, intelligent kid who works hard to do the right thing!"



Each year on his birthday I am moved by how far he has come. How many people he has touched. How many lives he has changed for the better. Because of him, I get paid to help other parents navigate the world of autism in person. Because of him, through YouTube and Blogger, my online advocacy for people with autism has reached tens of thousands.

Without him, none of that would have ever happened. Without him, I would not know such a deep understanding for people with disabilities. Each day he has to work harder than most just to get through simple tasks that many of us find easy. And yet he very rarely complains.



Thank you Hayden for your strength and courage. For teaching me each day how to be a better mom, advocate, and human being. Your struggle makes you stronger and has made you who you are today. I'm so proud of who you are and can't wait to see what the future holds for you.

Happy 11th Birthday Hayden, and FUA. I love you!

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!