Monday, November 13, 2017

Robotics Team

Hayden is very excited to have made the school robotics team! I was very proud of him at the first meeting. The teacher was explaining the different roles that the kids could choose from. She said that if the kids liked the programming activities they did in class sometimes, they might like to do the programmer role. Hayden perked up at this and got excited. But then she said that sometimes that job is the most frustrating, so if you’re a person who is easily frustrated, that might not be the job for you. 

After she finished explaining all the jobs and asked the kids to write down their preferences, I went over to see what Hayden was going to choose, in case I needed to steer him away from the programming job. I asked him what role he was going to choose and he said that he liked the idea of the programming job but he sometimes gets a little “rage-y", so he thought maybe he should choose the research job. I said that was true, and told him that he might be good at the notebook job because it involved drawing and he is good at drawing. I left to let him choose for himself. 

Later I asked the teacher what he had chosen and she said that he chose the notebook and the research jobs. I'm so proud of him for making a good choice of what would be most appropriate for him to do rather than what he thought might be the most fun!! Joseph told him that was a very mature choice. 

He later said that he figured this meant that he couldn't do his dream of becoming a Nintendo programmer when he grows up. I told him that's not true at all, that he just isn't ready for that role right now, but it's still an option in the future.

Here is a YouTube video of him making the announcement! Way to go Hayden!


Sunday, October 1, 2017

Definitions


Six years ago, these are the words I used to describe my son:

"This is who Hayden is. He is Autistic. He screams about everything. I've lost hearing. Everything makes him upset and nervous and afraid, and he can only say a few words so he can't tell you when he's scared or tired, or why. It defines him. At least for now. Maybe I wish it didn't. But it does."

For the most part, those words are no longer true. 


Take a moment to let that sink in.  Most of those words are no longer true. 


When a child is diagnosed with autism, most parents are told there is nothing they can do. Nothing. Accept your child as he is. Prepare to put your child in an institution. Some are told to do this sooner than later. Many children with Autism live in residential facilities, away from their parents.

And yet by the grace of God, I stumbled upon groups of parents who were saying otherwise. They were saying that there were medical reasons behind much of the behavior of people with autism, and some treatments were causing remarkable improvements. Some people were "Recovering" from Autism: these individuals had improved so much with the help of doctors and therapies, that when re-diagnosed, they no longer qualified for an Autism diagnosis. Autism no longer defined who they were.


I chose to follow that path. The path of Hope. I set a goal for Recovery.


In the seven years since starting therapies, Hayden has gained his words. He has become more confident and less afraid. He no longer needs noise-blocking headphones everywhere we go and no longer needs help with every simple task. He helps others with some of these same tasks that he once found so difficult. 


Hayden balancing, interacting with a novel peer, and accepting defeat graciously and without incident.

Six years ago I also said,

"I heard that Autism was curable, but I didn't really believe it. Being able to get through a store without meltdowns is like a dream you hope for but know will never really come true."


If I took 4 year old Hayden anywhere, by the end he was overwhelmed by the sounds and lights and people, and would be screaming in the checkout and trying to run away from me. Pretty much every time. 


Within a year of Biomed and ABA, screaming in the store was rare. 


Today he handles a store like any other child would. He asks politely if he can visit the toy aisle. He accepts a No answer without complaint. He asks if we're done yet. 🙂 He helps bring the groceries into the house if we ask. 



Hayden still has Autism. He has new challenges now, and some days are worse than others. Last week was a rough one for our family for various reasons. Sometimes the continuous strain can wear me down.

But my friends lifted me up and helped me refocus. I do have to pause and reflect on how far he's come. Much further than many ever thought he would. So I looked back at past posts and found this one from September of 2011. It was wonderful to be reminded of where we used to be, and that we're no longer there.

I continue hope that one day we will be able to tell the world that Autism is a part of his past. As a family we will continue to push forward with new ideas while keeping in place our tried and true interventions. We have our annual appointment with our MAPS doctor in Chicago coming up in a week, and we're excited to see what our next steps are.

But I would no longer say that Autism defines him. When he was a screaming, crying, non-verbal mess... I did believe that. Autism defined him.

He was unable to speak or tell us about his feelings or preferences: What he wanted to eat. Where he wanted to go. Who he loved. Imagine being unable to explain to others that you hate wearing socks, eating green beans, or being in loud places, for example. He was stuck in that abyss with limited ability to show us who he was and who he could be. It limited his capabilities in the moment and his hopes for the future. It barred him from the quality of life I felt he deserved. It ruled his days with lining things up and spinning instead of enjoying the company of others, and screaming through a movie instead of enjoying it. It controlled every aspect of his life, and sometimes ours as well.

Today Autism is just one piece of the person he is. He is so much more: artist, comedian, friend, gamer, designer, avid reader. An independent future is still within reach for him.


Autism no longer defines my son. 


Through the hard work of many, including Hayden himself, he has overcome many of the difficult attributes of Autism. He inspires me daily and it is my honor and privilege to share his story with you, with his permission, that you may gain Hope from it, and in doing so lead your own child to grow in turn.


Autism is treatable. 

Follow the path of hope. 



FUA.










I have to make this footnote, because this blog is read by people with high functioning autism, who may take offense to this post. Maybe some will disagree with this sentiment, but it's just my opinion. Others can have differing opinions of themselves or their children, and that's ok. Maybe you don't feel that Autism defines you or your child. Maybe you or your child are able to communicate your wants and desires. This is not the type of Autism he had. He was lost without the assistance of others. I'm not trying to define for you or your child who you are or what you or they can do. But I am explaining what defined my son and his opportunities for the future. Thanks, as always, for reading.\



Thursday, September 21, 2017

Autism is hard

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Autism.

Why does it have to be so hard?

Schoolwork and IEPs are hard.

Driving back and forth to therapies. Money for this and that.

No time to just be a kid. To be together as a family.

It makes me tired. Then tonight Hayden told me that his friend in class told him today that he will no longer be his friend because he has Autism. He said he feels sorry for him.

Now he's questioning if any of his friends are real. If anyone really likes him. 

My heart is broken for him.  

I'm so tired of the battles.  I'm so tired of the comments and the demands and the rushing here and there.  



I just want him to have a good life. To do his best. To be happy. 

I don't understand why it has to be so hard.

I know this blog usually ends with a positive. 

But today I'm sad for my son. For all he's missing out on. For all he endures.

I'm sharing because I hope you'll educate others. Please help spread the word, that people with autism deserve a good life, like anyone else.  They are people too. 

Send up prayers that tomorrow will be a better day.


Edit 9/23/17:  Thank you to everyone for lifting us up. I have talked with Hayden extensively about friendship, reminding him of who he has on his team and the nature of making friends at this age. We will continue to explore it but he is happy and hopeful about the future.

Friday, September 8, 2017

Friday FUA: Goals

This week Hayden's Centrality therapist had him share with me his goal for the year. Apparently he came up with this all on his own. He said his goal is to be more mature. I almost started crying. This kid SO wants to be more like everyone else his age. He not only knows what the word mature means, but when asked, of all the things he could focus on this year, he used that word to define what he wants for himself.

He tries so hard and I'm amazed every day by the new things that he is able to do for himself. His focus is better. His mood is better. His attention toward others is much improved. My goal for him to one day be independent is still very much within reach and it makes me so happy and so proud.

This summer I was in the laundry room. I asked Hayden to come help me with someone. He came right away. I asked him to go to his closet and bring me some hangers. He went right there, came right back with the hangers, and handed them to me, saying "give me back the extras when you're done."  What?  You care about the extras?  

A few weeks back he and I were at a restaurant together alone. I went to use the restroom and when I came back the server came to me and said, "your son wanted me to let you know that he was in the restroom." What?? He found a stranger (safe adult) and asked them to tell his mom where he was so I wouldn't worry?

These are just two examples of how far he has come and the major breakthroughs we are seeing these past few months.

Then today at his school one of his aides told me that she had considered going to half time at work this year but one of the main reasons she didn't was because she wanted to continue to work with Hayden. She said he's so hard on himself and yet he's one of the smartest kids in the class. He makes her laugh and he's so witty. He's a joy to work with.

MY kid made her want to keep working with kids with special needs.

I don't know how I got so lucky as to be given this child from God but I am so grateful to be his Mommy.

Or Mom as my 'mature' son would say.

Beyond blessed.

#AutismISTreatable
#FUA

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Friday, September 1, 2017

Time Timer

This is one of the best purchases we've ever made. It's called a Time Timer. You set the red section for how much time to do a task. It slowly moves and gets smaller until there's no red left. When time is up there's a quick alarm as well.

We use it for how much time there is until bedtime, or until we have to leave in the morning, or how much screen time the kids get. The kids can set it themselves for the amount of time we give them, and they (usually) hop right up when the time is done. It helps my son with autism to plan and pace himself, or speed up to get something that he wants. Like I said, well worth the money. We have two. Here is an amazon link. The little size is better because it fits on a desk and doesn't take up as much room.


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Tuesday, August 29, 2017

First weeks of school

He has had really good days at school with only a few minor behaviors since school started!

His sister's crying has been a major trigger for him in the past. The other day she kept crying repeatedly (maybe 5 separate occasions one night) and he yelled on the last two times. He wanted to run off to his room but we really needed to finish his homework so he could have his reward (screen time) before bed. So I encouraged him to get through the work and had her leave the area. He did so well remaining calm and getting his work done despite his frustration!

Yesterday he went to the orthodontist. He was very nervous about whether he would need x-rays and kept verbalizing that he was nervous. During the visit he let the orthodontist touch his mouth even though it made him uncomfortable. He did a great job through the exam.  So proud of how far he has come!

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Sunday, August 20, 2017

Flashback: August 2010

Some people who know Hayden now but did not know him before assume that he was always "high functioning." This is far from the case. A typical 4 year old should be able to tell you all kinds of things about their day. Mine had only a few words. After starting ABA therapy and Biomed, his words started to come out.

#AutismIsTreatable









Wednesday, August 2, 2017

Taking a break



Hayden had a great first day of school today! His special ed teacher told him that her goal for him this year is to ask for a break rather than leaving the room without asking when he's upset. I have been reminding him of this goal this week and going over good choices he can make.

Today he asked for a break! He later told his therapist that he was starting to get upset and thought about stomping out of the room. But he remembered that I told him that his goal was to take a break and decided to ask for a break! He was able to go to the sensory room to calm down rather than have a meltdown. I am so so proud of him! Great job Hayden!


Sunday, July 30, 2017

Flashback: 7/20/15

So this guy volunteered to pick up both kids after school, take them home for snacks, and meet me at the splash park where I was supposed to be for work.

Hayden agreed to leave the Y early, a favorite activity. But once home he couldn't find his swimsuit and was upset. (Turns out it was in the trunk from a few weeks ago. Eww.)

At the splash park Joseph told Hayden it was ok to play in his shorts in the water. Hayden couldn't get his mind around wet underwear and was sulking. So Joe jumped in and got wet himself to try and convince Hayden that it would be ok. Hayden didn't go for it (but we were proud that his fit was only mild!) so Joe asked if he'd like to go to That Fun Place (an arcade) instead. They sat and discussed it on the playground. I came over and heard Joe say, "but don't tell Rylie. Just tell her you're leaving." (She was already wet and wouldn't be able to go.)

Hayden told Rylie goodbye and the boys went off to play laser tag (Joe in a wet shirt and shorts.) We met them at home later where Joseph made three meals. Hayden wants Mac n cheese for dinner every day. Today he requested spaghetti so Joe made him some, made Rylie sausage, and us beef and noodles. Then he thanks me for doing vitamins because "he's been slacking."

I'm not sure how in the world Chelsea knew when she saw him. But she walked into our office two years ago and announced to the group, "You guys. I found Sheila's husband." I keep replaying it in my mind.

I'm just so glad she did.

Joseph, soaking wet, about to take Hayden to That Fun Place. 



Monday, July 24, 2017

Commercial

Today Hayden filmed a short commercial for our annual company meeting. It will only be seen by company staff, not the public, but it will be awesome nonetheless. Hayden memorized his lines and performed them perfectly. He was funny and had a great time.  I'm really looking forward to seeing the final product!

Monday, July 17, 2017

Kids Day

When Joseph was growing up his parents had a tradition they called Kids Day, where the kids got to choose the activities for the day.


Last week we had our first ever Kids Day and it was a big success! We had gluten free donuts, play time at Zip City (out first visit!), two new-to-them books, dinner and gluten-free cookies, and a trip to U Paint Pottery. At dinner we went around the table a few times sharing something we liked about each kid, building up their confidence and helping them feel valued as a person. The kids both had sweet things to say about their sibling.





We don't get a chance to do these kinds of activities together as a family very often and it was fun to spend time together doing things just for the kids. No therapies, no doctors, no stress. Just fun and quality time together. Rylie kept saying she was in Heaven and was sad to hear that Kids Day was coming to an end. They slept well that night!

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It was a great day and I wanted to share the idea in case other families wanted to implement Kids Day sometime in the future.

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Sunday, July 9, 2017

ARI Post


High Pain Tolerance

Autism.

He went a week with a broken arm without asking for pain meds or to get it checked out. I took him to get an X-ray after he said it hurt to even touch his wrist a week later.

"I can't prove it, but I think people with autism process pain differently," said the ortho doc.

Yes. Yes they do.




This is the same spot he has broken twice before. Prayers for speedy healing! 

Where to Start?

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Free webinars:  ariconference.com 

Articles on getting started:  www.tacanow.org

Conference: www.autismone.org



Saturday, July 8, 2017

Riding A Bike

Treating autism is often two steps forward and one step back. This week has had its ups and downs (Read: broken arm incident), but there are so many gains to report with Hayden lately and I'm really excited for him! Here is a big one that we need to share.
Two weeks ago Hayden attended I Can Bike camp to learn how to ride a bike. He had some experience in the past with riding, but always with training wheels that were not super sturdy. He had become afraid and embarrassed to attempt to ride his bike and was unwilling to give it a try.
A week at this camp for special needs kids and he is now riding in the culdesac with the neighbor kids (and apparently even in the grass!) with no issues. Even starting and stopping have become easy for him, and that was a struggle right after camp because they mostly focused on balance.
I worried when he broke his arm that he wouldn't be able to keep practicing, but he asked to get his bike out the next day (partly because the neighbor girl was riding, and we think he may have a little bit of a crush on her.) 🙂Reluctantly I said Yes and he has been just fine. More than fine. He looks like he's been riding for years.
I grew up on a quiet dead-end, playing kickball in the street and riding my bike with my neighborhood friends. I'm so happy that Hayden has the chance to enjoy this typical part of childhood. No more training wheels, no more fear. Just chatting with his friends on their bikes on a beautiful summer evening.
We are so proud of you Hayden!


Monday, July 3, 2017

Hope for Autism

I asked Hayden to help me give hope to other parents looking to help their children with autism. I asked him to explain what it was like before treatment for autism, if he could remember, as well as what treatments he thought were helpful. I didn't coach him beforehand, and he didn't practice. This video was the first take.

You can see that there are still issues with focus and stimming. And there are some other things he still has to work on like the anger issues he mentions. But he is telling a story without prior prep, making eye contact, dealing with interruptions, and employing humor in his presentation. This kid has come so far from a child who was non-verbal with frequent behaviors at age 3!  We are so proud of you Hayden and can't wait to see what the future brings with your hard work!

Autism is treatable!
FUA!


Medicaid



Many people with autism and other disabilities have Medicaid because of their disability. My son is one. He just received his Medicaid card last month after a year on the waiver waitlist. The rest of his family does not have (or need) Medicaid.

He has it because, not too long ago, there were few options for services for people with disabilities. As a result, many people with disabilities ended up in residential facilities, either as children or as adults. The idea of the waiver system came about to help get these individuals services, to help them become more independent, allowing them to live in their parents' homes or on their own in group homes or apartments. Instead of a lonely, scary, often poorly-managed institution.

The Medicaid Waiver allows individuals with a developmental disability to qualify for Medicaid regardless of their parents' income. The Medicaid waiver gives these individuals Medicaid which they can use for medical services such as the doctor, dentist, and ABA therapy. It also gives them a separate bucket of money that they can use for services like occupational therapy, physical therapy, speech therapy, parent training, and more. My son can now access these services because of the waiver, to help him become more independent and hopefully some day have the opportunity to live on his own.

The current bill in the Senate will cut services for individuals with disabilities including waiver programs. This means that many individuals currently receiving services will no longer be able to. Some of the services are very expensive and families are not able to pay for them out-of-pocket. These families may lose both waiver and Medicaid coverage for their children.

I hope that, as someone who knows someone with a disability (Hayden), you will consider the impact this bill will have on him, and if moved to do so, voice your concern to your representatives that these cuts to Medicaid should not be made. I believe that individuals with disabilities deserve to have the opportunity to live as independently as possible, and the Medicaid waiver system was put in place to help them do so. This bill will have a huge negative impact on this population. I have contacted my representatives already on this issue and I am asking you as a friend to consider doing so as well.

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Hayden and little sis at his last special needs baseball game.

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!