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.


Monday, October 10, 2016

Flashback: October 10, 2012

'Rylie, can you clean up? Put your shoes away please.' Rylie looked around, saw the shoes, picked them up, and went in the other room to put them with the other shoes. She's 21 months old and I've never asked her to do that before. I didn't expect her to be listening, or to know where the shoes go. That's because of what happens when I ask Hayden to put his shoes away:
Hayden, put your shoes away please. (not listening) Hey, Hayden. (twirling his socks) Hayden, are you listening? (no response) I get on his level, look in his eyes. Hayden, can you put your shoes away please? "I can't. I don't know where it goes." They go by the front door. "Where? I don't know. I can't do it." He's not really listening still. 'Come with me. See? Right here. Go back and get your shoes and put them with these.' He goes back to the shoes, but gets distracted and sits down and starts picking at a loose string on his sock. 'Hayden.' No response. 'Hayden did you put your shoes away yet?' No response. Go back, get on his level, ask him to put the shoes away. He snaps back into focus, grabs the shoes, and puts them away.
This is how my day goes. I brush his teeth for him because he has frozen holding his toothbrush in his mouth; get him dressed in the morning so we're not late because I've already asked him to get dressed 15 times and he's still sitting there in his underwear; I remind him to eat the food that's sitting right in front of him at dinner. Being my first child, I didn't know children as young as 21 months could understand and respond appropriately on the first request. Every time I ask Rylie a question and she answers me the first time I ask (and not the 25th), I'm surprised.
What a beautiful gift God gave me, to experience Hayden's worldview first, to let me understand how children with Autism think [to me, his way of thinking is "normal," her way of thinking is a pleasant surprise]. And then to experience Rylie's worldview next, to know that God made us all different so that we can fill in the gaps for others when it's our strength, knowing the favor will someday be returned. I will always need to help Hayden, but he has already helped (and changed) me.

Tuesday, September 6, 2016

Updates with the move


Hayden has had a pretty good weekend despite the move. There was a minor tantrum or two at home where he locked himself in his room. I can't recall what he was mad about. He's been struggling with Rylie this week, as far as not liking her crying or having to share time with me. But, he did really well yesterday sharing his Wii U game with her, teaching her how to play and not taking over. This is something he's struggled with in the past. Both kids are loving the new house and enjoying the extra space. We're excited once we get unpacked to have a chance to get outside and explore the new neighborhood.

Random aside:  This week Hayden has been asking about bullies. How to avoid a bully, does being a 'nerd' or smart make him a target, and his reaction if someone were to bully him. His answer was that he would "make them regret it" by yelling and attacking them. Not the reaction we're looking for. :) 

We are so grateful to grandma and grandpa for watching the kids for two days while we got settled. Thanks for making things a lot easier!  


Saturday, July 30, 2016

Moving

We are excited to be moving to a new school district for this next school year. Last year went pretty well for Hayden, but the year prior was extremely difficult for us as a family. I only alluded to it on this blog for multiple reasons.

For one, I wrote a blog post that the school asked me to take down, by way of my lawyer. Included in that post was a statement that read something like, "They managed to drag it out for a year, but we finally have an agreement on our due process." Due process means taking the school before a judge, to decide if they are in the wrong.

I amended the post rather than take it down. You can view it here.  I suppose the wording was probably incorrect, though that surely wasn't what they took issue with. The school didn't drag out the due process for a year, just the requests that I was making, including that he have a behavior plan, something that is required by law. That was definitely dragged out, in fact for about two years, if not more. But I'll explain that another day.

Going over documents the night before an IEP meeting with my super supportive husband.

For two, the school district retaliated against our family. Retaliation refers to some form of discrimination, coercion, intimidation or threat. You can learn more about retaliation and parent rights here. I will tell that full story another day, as well. It was very painful but the story needs to be told.

I don't plan to name the school. I don't need to. It's not about pointing fingers so much as educating the public. I have always wanted this blog to be about positivity and the sharing of information and ideas. There are so many things that parents of special needs kids don't talk about, or can't talk about, because of pressure from others. When my son was left on the bus, I couldn't share the story at the time. I was able to a few years later; you can read about it here. I shared it because I want others to be aware that these things can and do happen, and that there are things you can do to try to prevent them, and actions to take when they do unfortunately happen. It was an important story that needed to be told. The story of our due process experience is important as well. And as I process through what to share and how to share it, I will.

Rylie at baseball this summer.

The moral of both stories is that kids with special needs need to have advocates. Parents are unaware of laws that are out there to protect them. It is a goal of mine to share information for other parents to know what they can do, what they NEED to do, to protect their own children. The Wrightslaw website is a great place to start.

The kids on Hayden's birthday.

Children with special needs should not be seen as a burden to public schools, or as objects to be placed in one box or another. They are human beings who deserve to go to school and be treated with respect and kindness, just like any other child. This is all I ever wanted for my children. I didn't go searching for a fight.

And to clarify, none of this has been about the individual teachers working with my child. For the most part we have been lucky to have teachers who truly care about kids and only want the best for them. This entire process and the problems we've encountered have been at a level above the teachers themselves, mostly at the district level. His previous special education teacher was very kind and understanding, and has been a great help in Hayden's transition to a new school.

Take my picture mom! It's too small!

School starts next week, and I couldn't be more excited. Hayden's new special education teacher has already reached out to us and is more than willing to support his needs. I know he is in for a good year and I can't wait to share more about it with you. He works really hard and deserves to be in a place that does right by kids with special needs.

I told my husband the other day that I was trying to be brave, and he said that I'm not brave, I'm strong. I know that's because of the things I've experienced, and the attitude I've taken toward overcoming. I want not only to overcome, but also to lead those who have been in my shoes to become stronger themselves. I hope this blog inspires each of you spread your wings and soar.





Friday, June 3, 2016

Friday FUA: His IEP Draft

Statements from Hayden's teachers in his most recent IEP draft:  

Hayden is polite, caring, conscientious, and hard working. He enjoys interacting with his peers and adults. He earns good grades.


Hayden stays in the classroom and struggles with focusing and frustration when things do not go as expected.

Hayden participates in the 3rd grade general education curriculum. He shows good academic strengths.

Hayden manages his student role well with the Instructional Assistant. He does still become frustrated at times.

His social skills are very good as well. He interacts with friends and uses appropriate conversational exchanges. For the most part, he is a typical 3rd grade student.

Hayden will participate in the appropriate grade level state assessments. He is at or above grade level. It is fully anticipated that Hayden will obtain a high school diploma.


LRE Placement Category based on Federal Program Types: 50: General education classroom (In a general education classroom for 80% or more of the day)

Reasons for provisions and reasons for rejecting other options: 
Hayden has been successful in the general education setting with support from a Special Education Staff Member. This is his least restrictive environment. He is accessing the general education curriculum and doing very well socially, behaviorally, and academically. Spending more time in the special education resource room would be more restrictive and not meet the needs of Hayden at this time.

Photo:  Hayden and his friends on a recent field trip downtown. 



Saturday, May 21, 2016

Help for a friend

My friend's son with autism is on the road to recovery. They have a long road ahead. He will be in the hospital for at least another month. If you are able and would like to donate even $5, there is a link below. Thank you for all the continued prayers for their family.
"We have recently been made aware of a single mom with two boys with special needs in Crown Point, IN who needs some help. One of her sons was hit by a car on Monday and is in the hospital in Chicago with a severe brain injury as well as multiple injuries in other areas of his body. He has undergone many surgeries this week for all of his injuries. She lives approximately 45 minutes from the hospital where her son is being treated and cannot work right not because of all that is going on. We would like to help her financially by raising $1000 for her family. Once we reach $1000 in donations for this family, R[4] will match that so that we can send them $2000 all together. So between now and June 1st, please help us bless this family with a special gift of love!"



Monday, May 2, 2016

FUA: Lamby Needs a Rescue


Hayden and I were at the grocery today. As I walked the aisles looking for items on my list, he had his nose in his new library book. 

I was saying that we needed bananas as Hayden said, "Look, someone lost Lamby." It was a stuffed toy from the Doc McStuffins cartoon, lying on the floor in the produce aisle. It was obviously well loved.

I remembered a mom with two kids had just been in the aisle so I looked around. They were up at the checkout. 

I told him, "Quick, grab Lamby and take it up to that mom. Ask if it's hers."

I could have done it myself. But I wanted to see if he could do it. 

He was hesitant at first, but did it without complaint. When he got close to the checkout he couldn't find who I was telling him to find. He started to wander back twice shrugging his shoulders and I kept pointing and saying, "Lane 4. The lady in the black shirt. Lane 4." He was 8 feet from her.  

I saw an older couple come around the fruit aisle and stare at me, so I started to go around the fruit to help him. 

But as I got around to the other side, he found her. I pulled my phone up to snap this pic as he was talking to her. She quickly said thank you and put Lamby in her cart. He came back and stood next to me, probably ready to get back to his book.  

Neither he nor the mom he just helped were aware how big this was for him. 

He noticed an item out of place. He willingly picked it up and went looking for the owner. He came back toward me for help when he couldn't find her. He persevered and continued to look. He found her and asked her an appropriate question. (Or at least I hope, since I couldn't hear.) Once she took it, he walked back to me rather than starting an off-topic conversation. (Like he usually does.)

I asked if she said thank you, hoping to see if he would tell me more about what happened. All he said was, "Ugh. I think it had slobber on it." 

And he held an item that he thought was gross because I'd asked him to help someone. 

"Do you want some hand sanitizer?"

"No. It's dry now."

I started cracking up. "Ok, let's get the bananas so you can get home and finish your book."

Such a boy. And my favorite one at that. So proud of you, Hayden!



 

Thursday, April 28, 2016

Signs

When you're driving down the road asking God and the Angels for help with something, and they send your number sign a minute later...


Sunday, April 24, 2016

Fatigue

I've been exhausted for a while now. I'm not sure when it started, but in the last few months it's gotten really bad. In the evenings I come home and sit down and can't seem to make myself do anything. I sleep all weekend. I want to do fun things with my family and friends, but I have to decline because I'm just so darn tired. My kids ask, "why are you always sleeping? Come play with me." That's the hardest. I feel like I'm letting my family down.
Another autism mom suggested a functional medicine doctor who could look at biomedical causes for me, rather than ignoring my complaints like the four endocrinologists I've seen. This new doc ran all kinds of tests and prescribed all kinds of things, including a new supplement regimen, infrared saunas, detox supports, dry brushing, an auto-immune diet, exercise, and removing the cause of the problem, if possible.
The problem? Biotoxin illness. My blood tests show that something is making me sick. It could be mold. Lyme disease. Bacteria. We are still trying to figure that out.
Moving is likely. Getting rid of a majority (or all??) of my possessions is a possibility. Cleaning and packing are necessary but also problematic, as they can make me worse. Luckily it's a beautiful day today, so the house is airing out and the sun is lifting my spirits.
I sometimes feel like every time I get a break and things start to get better, I get thrown another doozy. Kid with autism? I got this. 
They left him on the bus? At least he's ok. I got this. 
Car accident sent you into early labor? Bedrest, I got this. 
Husband cheated? Better off without him anyway. 
Rylie has constant diarrhea for months? MAPS doctor and dietitian fixed it. 
Horrible apartment with no hot water, swarm of ants and broken washer? Parents helped. 
Not enough money to move? Brothers helped.
Can't afford movers? Friends helped.
Wallet and phone stolen? Parents helped. 
The school retaliated against you when you tried to advocate for your child? Lawyer and advocates fixed that. 
Hayden might have PANDAS? Learning, gonna fix this. 
Starting to pay off debts and then the doctor explains that you need tons of medical testing, treatment, have to move and possibly buy all new belongings? Um.... Sigh.... I got this? Deep breaths. I can do it. I think I can do this. 
But getting rid of personal possessions is hard! What about my paintings, like the one above? Childhood scrapbooks? Biomed books? Air filters are expensive! I've maxed out my Care Credit. How will I buy all new stuff?
And I've plunged into a whole new world of biomed research. What are biotoxins? How can I heal? How do the recommended supplements interfere or work with my genetic mutations? What is c4a, HLA, CIRS, MSH, TGF-b1?
If you pray, or send virtual hugs or intentions, or whatever good vibes you can send us right now, please do so! Thankfully I have Joseph who has been here for me every step of the way, and Crystal and Maria online who are helping me learn. I found a doctor who ran the right tests, and found out why I'm so tired.
It's emotionally exhausting. But I'm working toward better health and will do what I need to to feel better for my family. When I'm lost and confused and don't know what to do next, I write. Some things have to wait until later, for political reasons. But this I can write about now. And for that I am grateful.
I feel like most of my life experiences have been there to teach me something. I've always become stronger as a result. What am I meant to learn this time? That it's ok to let go? Not to get complacent? I'm feeling frustrated and disappointed. Shouldn't I have built up more karma than this? ; )
Crystal sent me this image, so I'm going to try and use it for inspiration. 
It's ok. I will keep going. I've got this.



Update, 9/19/16: ERMI testing indicated the house was fine! I am so grateful to my doctor, family and friends for all of their support during this difficult time. Life is good!

Tuesday, April 12, 2016

Just a typical evening

Scene: Joe and I are in the kitchen. The kids are supposed to be upstairs getting ready for bed. 

Joe: What do you think Hayden's doing?
Me: sitting in his underwear and reading Garfield. 

Rylie: (yelling down the stairs) MOM!! 
Me: Yes?
Rylie: IS IT SHORT SLEEVES OR LONG SLEEVES TOMORROW?
Joe: Let me look. It says cold in the morning and warm in the afternoon. So medium sleeves.
Rylie: What does that even MEAN? 
Me: Short sleeves! 
Ry: But Joe said long sleeves AND short sleeves. 
Me: short sleeves. 
Ry: that doesn't make SENSE! Does he want me to wear both? 
Me: short sleeves. 
Ry: MOM!!   I need your help. 
Joe: (turns on vacuum) CANT HEAR YOU, VACUUMING! 
Rylie: (inaudible) 
Us: cracking up 
Joe: (turns off vacuum)
Rylie: MOM I still need your help! 
Me: what is it? 
Rylie: I can't find my pineapple shirt. 
Me: (now upstairs) It's in the dryer. 
Rylie: but when will it be done? 
Me: Tomorrow. 

(check on Hayden, who is in his underwear reading Garfield) 

Me: Did you brush your teeth and go to the bathroom?
H: yes
Me: are you lying? 
H: No. 
R: When will my pineapple shirt be ready? 
Me: tomorrow. 
Joe: go get ready if you want a story. 

Ry: (goes to bathroom and shuts door)
Joe: are you writing all this down? 
Me: yes. do you think she's actually getting ready? 
Joe: I don't know. It's a toss up. 
Rylie: (opens door) I heard that. 

Rylie: when will my pineapple shirt be ready? 
Joe: you better hurry up if you want a story. 
Rylie: I think Hayden's lying about brushing his teeth. 
H: I am not!  Rylie don't take my sleeping bag! 
(As Rylie drags his sleeping bag into her room.)

Our family is ridiculous. I love it.

Sunday, April 10, 2016

3rd Biomed Conference Was A Success

Thank you to all the speakers, vendors, and volunteers at the 3rd Biomedical Interventions for Autism Conference yesterday. Without you this day would not have been possible.
Special thanks to my volunteers who were there all day to help bring autism resources to local families.

Thursday, March 3, 2016

Special needs moms are the best

Hosted a great workshop tonight presented by family voices of Indiana. It's so empowering to be in a room full of special needs parents, all of them women, who want to explore every avenue to help their children.

I am blessed to have a job where I'm able to bring families together to share ideas and resources.

Thursday, January 14, 2016

Indiana Autism Conference


The 3rd annual Biomedical Interventions Conference at our Greenwood location will feature keynote speaker Dr. Phillip DeMio of Ohio. The morning sessions will be an introduction to the basics.

According to Dr. Mary Lou Hulseman, a Fellow in the Medical Academy of Pediatric Special Needs, "Autism is a medical condition affecting the gastrointestinal, immune and nervous systems. The foundation for medical treatment is improving gut function by limiting sugar, avoiding gluten and casein and adding dietary supplements, as well as identifying and treating any intestinal infections. Later, many people also improve with treatment for heavy metals such as lead. The biomedical approach was developed by a group of physicians and researchers. You can learn more about this approach at www.tacanow.org  and www.medmaps.org."


Early bird registration saves you $10 and ends next month.