Guest Blogger Tracy Miranda: Walk Beside Me, Be My Friend

You might know this guest blogger as Calormom on Twitter.  She is one of my best friends and I am so honored to be having Tracy Miranda sharing her son's experiences of living on the spectrum.  Tracy is a loving mother, wife, school employee, volunteer in her son's classroom, and consultant for Origami Owl.  

Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend.   ~Albert Camus

April is always a difficult month. Every year there is a new hope that the autism community will come together and shed new light on our cause. Yet, every year there just seems to be more fighting and less understanding. Pro vaccine vs anti vaccine, awareness vs acceptance and even fighting over the color blue and the puzzle piece. I wanted to write an inspiring piece about how we need to respect each other and how our opinions are our own. I have to believe that no matter who chooses to support what, at the end of the day each parent believes they are doing whatis best for their child. Who am I to argue? I decided instead to write about a different kind of inspiration. My son and his best friends who are changing minds about autism every day.
When we first received Conor's diagnosis it was the month before his third birthday. He had been in early intervention since he was 20 months old due to speech and fine/gross motor delays. He went five days a week for over a year before he received his diagnosis as he was getting ready to transfer into the school district. He was then in a pre-k class for a year and a half. He learned a lot and made big improvements. He spent the first year playing next to the other kids but didn't interact with them much. At recess he would walk the perimeter of the play yard and never try to play a game with other kids. When he became more verbal he could name the kids in his class, but didn't play with them much. There was one exception, a girl named Bella. They often stuck together and tried to play together on play dates. But she was a year older, a little more advanced, and it was obvious he didn't really know how to play yet. He followed her around a lot and it was the first time we saw a connection to another peer. They would hold hands, dance together, run, play and she would try to sneak a kiss now and then. Since she was older, she moved on to kindergarten and they saw less and less of each other. She has since moved out of state so they don't see each other, but they still love seeing each other's pictures and hearing stories about how they are doing.

He had made so much progress in his pre-k class that the next year he transferred to a special day class in our district specifically for high functioning kids with potential to mainstream. It was there that he met the friends that would change his life, Eli and Lilly. Eli had actually been in the same early intervention program as Conor for a few months. However, neither of them had the skills to be friends back then, so it was almost like they were meeting for the first time. After school when we picked the kids up, the other parents and I soon realized this was something special. We planned a couple play dates and the kids always had a blast. We used to marvel at their progress when we watched their friendship blossom. None of them had ever connected to other children like this before.



That first school year, they did so much together. We had more play dates than you can count. They went to the zoo, went on hikes, went to restaurants and went swimming. They went to the pumpkin patch, celebrated Hanukah, Christmas, birthdays and saw the the Easter bunny. All the while, sharing laughs and making memories. Last summer our families went on a weekend vacation together and the kids had the time of their lives. We stayed at a vacation home of a friend of mine. The kids had been talking about having a sleepover and we told them they were a little too young still. This was the best of both worlds. The kids got to dance in their pajamas together and have movie night, yet still sleep in their separate rooms. It was a magical trip.

This past September Conor and Lilly moved on to kindergarten and Eli just missed the age cut off. We were worried that Eli would be devastated that his friends wouldn't be in his class anymore but he has thrived. Conor and Lilly are trying to make new friends but they do struggle. They don't know what to say or how to act.  One of Conor's classmates came up to me one day and said "Conor's being mean." I told her that Conor doesn't really know how to be mean and asked what he had done to her.  As it turns out, she was upset because he told her she couldn't climb up something and, since she could, she didn't like his remark. All of them have some trouble connecting to their neurotypical peers. If he had said that to Lilly, she would have told him he was wrong, and then shown him. She wouldn't have thought another thing of it. The connection between these three friends is undeniable. There is a level of comfort and understanding they have with each other that can't be duplicated. They all have sweet dispositions and love to be silly. The three of them have made such memories that I know will last a lifetime (and not just because their autism gave them ridiculous memory skills). We still have play dates as often as possible and their bond has never been stronger. We recently went back to see the Easter bunny and it was the first time in a little while that all three of them had been together at the same time. They hugged each other, danced and played, and walked through the mall holding hands.

I wanted to share their story because I want to give hope to those who may need it. Here are three children on the spectrum who are proving people wrong. They have a bond like siblings; they fight and love like brothers and sister. They do love to push each other's buttons and can certainly make each other mad. None of them have siblings of their own, so we feel that's one of the reasons this friendship bond is so strong and important. They are learning that sometimes one of them needs a moment to be alone, and that's ok. They are learning to ask how to help each other when someone is hurt or when they are upset. They have empathy and genuine love for each other. They are learning to share, take turns and compromise. They are learning that time apart doesn't diminish their bond. They are proving that autism doesn't define them. The friendship they have is easy, when so many things in their lives are hard. I love Eli and Lilly as if they were my own kids. I hope this is the beginning of a lifelong friendship. I think they're off to a great start.

Guest Blogger Melissa: Best Friends--Actions Speak Louder Than Words

Today's guest blogger Melissa O'Connell Timmer is a beautiful and talented individual whom I have had the fortune of calling friend for many years.  She is a devoted wife and inspirational mother to son Brycen who is on the autism spectrum and daugher/dancing diva Aubree.  In her "free" time she volunteers at her kids' school and works hard year long to raise thousands of dollars for Autism awareness. 

Friends listen to what you say.    Best friends listen to what you don't say.   ~Author Unknown

 

April…the month of the year that many in the Autism community choose to refocus on what is our individual mission within this spectrum.  Some parents/individuals focus on raising awareness.  Some focus on acceptance.  Some want to go off the radar for a while.  Our family chooses to just continue what we do all year long!  Give our son the best life we can and help him gain the skills we feel is important for him to life his life to the fullest.

One of the skills we choose to focus on the most right now is building peer relationships and helping Brycen learn how to play & interact with his peers.  Brycen is blessed to attend a school that encourages integration between the children with special needs and their typical developing peers.  Brycen & I are even more blessed that the last couple years there is an amazing little girl at his school that has given him a boost in this area.

Brycen & Shealin met a couple years ago at the beginning of 1^st grade.  They were assigned to the same general education class.  Even though Brycen only spent part of his day in that classroom environment, it was obvious the relationship that was budding between the two of them.  As the year continued, the teachers/associates included Shealin more into Brycen’s day by encouraging her to be a “peer mentor” to him.  Brycen is nonverbal & uses a communication device throughout the day.  He also can be aggressive at times when he doesn’t know how to communicate or gets overwhelmed & overstimulated.  Shealin understood all of this at the tender age of 6 years old & accepted him for who he was.  It worked out so well for both, that at the end of the year the team unanimously decided it was best to put them in the same 2^nd grade class as well to help Brycen with the transition.  I don’t think any of us could foresee how this young friendship would grow into something even some adults don’t have in their life!

As 2^nd grade progressed, other students & teachers came to realize there was not a Brycen in the general education classes without a Shealin with him.  Two peas in a pod, the ying to his yang, etc.  When Brycen is upset, he tends to be aggressive to those he is most comfortable with.  Shealin is no exception to that.  Yet, she doesn’t get upset with him like many other peers & adults do.  She states how she feels when he hits her and moves on, never judging him, accepting that this is sometimes too hard for him to control.  Shealin knows how to work Brycen’s communication device almost as well as the teachers/associates with him.  She understands that he doesn’t play the way the other 2^nd graders will at recess, and is eager to run around with Brycen in the way he knows how to play.  She can tell the signs of when he is getting frustrated and immediately reaches in to hold his hand, give him a squeeze to help him through, or just whisper to him that it will be ok.

Their relationship has progressed outside of school as well.  Brycen & Shealin are the true definition of best friends.  Shealin is the friend that EVERY child deserves, whether they have a disability or not.  Shealin has a heart of gold, wisdom beyond her years, & never-ending patience.  When Brycen & Shealin are together, there isn’t “Autism” in the equation.  Shealin is an amazing young girl that many older children & adults should strive to be like.  She is not only Brycen’s hero during some very rough years of his development, but she is MY hero as well!



If you are reading this blog post, I hope & pray that your child can have the relationship of a lifetime like Brycen & Shealin have!  I encourage you to talk to your child’s school & discuss implementing a peer mentor program like we are working towards at Brycen’s school for all children with special needs.  Not only is it a benefit to your child…but it’s a benefit to the peers who will be taught acceptance & understanding of those who may be a little different than them.  Let’s move into a new mission and focus on our children!

 

 

 

 

When Elf's On Your Side, Anything is Possible

On Caden’s birthday Dan had to leave town unexpectedly for a family emergency.  As you can imagine this had the potential to launch a major autism disaster as did his absence for the next 9 days; honestly it did launch an autism blow up but I think Elf and I managed to minimize the disaster to semi-tolerable levels.  There were some notable highlights and lowlights.....

First we managed to finish out the birthday without too much drama. Caden genuinely enjoyed opening his presents and even requested the birthday song. Now this is huge because as you may recall we’ve had a ban on such songs for several years now. Granted he stopped us part way through the song but it was a sparkling indication that 6 is going to be a spectacular year for Caden. 

Thursday was a dramatic day although probably more so for me than the kids.  I have a huge dental phobia-you know the kind of phobia that doesn’t allow you to walk through the door to a building that houses a dental office or even watch dental commercials. But the appointments couldn’t be rescheduled until well after the start of school (and yes I did confirm that information just in case I had an escape hatch to use) so we headed out.  Caden was an absolute rock star even though he had to have dental xrays for the first time and the assistant wouldn’t allow Elf or I to go back with him.  He handled the exam and cleaning better than I did and the only work Elf had to do seemingly was with me.  We even made it home from the dental office although we may have taken a scenic route home. 

Fast forward through a few major meltdowns and we were ready for Ryley’s birthday party Thursday evening.  Although we were risking life and limb by going to a roller skating arena for the party, I refused to risk Elf’s tail so he stayed home.  Hosting a pre-teen party and keeping an eye on an energetic 6 year old was interesting but thankfully the older kids were all very kind and took turns playing with Caden on the playscape. One of the mothers even took pity on the look of fear on my face and stayed to help me. 

Friday we started a new medication for Caden.  After a long consultation with his pediatrician, we decided that Caden just couldn’t tolerate another surgical procedure unless we were dealing with an emergency.  She shared that trialing him on a new medication would give us almost the same information as one of the tests  because we’d either see improvement or we wouldn’t.  Side effects potential seemed minimal so I was totally and completely sold on the noninvasive plan. The kids and I headed out to pick up the prescription, try to get a few more school supplies at Walgreens, and then try to find the specialty pharmacy that was compounding a few new meds for our cat who apparently has kitty IBS.   Seriously we now have a dog with an ulcer and a cat with ibs—are we just the human and mammal GI disaster household??? This was all pretty uneventful until a stranger climbed into the front seat of the van with us and then proceeded to chat after realizing she was in the wrong car. Note to self: must research how to behave in a carjacking asap as I realized I had no clue although future carjackers should note that I am directionally illiterate so please allow extra time to program my gps.

Saturday marked the passing of another 28 days so the kids were slated for infusions at the hospital. We were able to get the new product in time for this infusion and thankfully both kids’ needles went in on the first try this month. Since I’m already boring you with a lot of details I won’t get into too much on this one other than to say that Caden had a rough time with the new medication and that gray isn’t the best color on him.

A lot of meltdowns, very little sleep, another doctor’s appointment, and a lot of school supply shopping later we headed to Mayo on Wednesday.  The biggest thing I learned on this trip is that I don’t drive our new van enough.  Case in point: Ryley and I had to read the instruction manual in the gas station parking lot in order to get the gas thingy off and we rode home with our windshield wipers on because I either thought it was a good idea or couldn’t get them turned off while driving [I am neither confirming nor denying which answer it is]. I also had to continue to be very thankful that my phone has an amazing gps because our creative route out of Rochester would have put us in the wrong state eventually if gps wouldn’t have kindly ordered us otherwise.  

I don’t know if I lost or won more battles in the last week but I do know that the kids were fed, they got some sleep, the house was semi-organized and clean, and at the end of almost every day Elf and I were still standing. I can honestly say that I needed Elf almost as much as Caden did because he was my backup and some hours the only living being in our household that I could guarantee liked me at that moment.  There’s something reassuring and consistent about a service dog and I’ve got to say he seems to be showing a lot less ptsd than I am at the moment.  Maybe it’s his acceptance of the moment rather than anxiety over past experiences or worry over what’s coming up next.  As long as there’s a little treat every once in a while, he’s ready for the next challenge; although I don’t quite know how yet, there’s a lesson for me to learn in Elf’s demeanor. I’m just hoping that we can substitute out Coke Cola or Starbucks for those stinky little nonvegetarian doggy bites that he so loves!