sensory issues – sherylscript

Phi Theta Kappa Honors Inductee: Nick

Nick received an invitation to join Phi Theta Kappa Honor Society at college. What an honor! Two weeks ago was the induction ceremony. It was quite an event.

Nick has studied hard during his semesters at the local college. On average, he is taking 8 units a semester and working 15 hours a week. That is a full schedule. We’ve had to focus on time management and studying skills, and it’s paying off. We continue to work on some anxiety/calming techniques as school isn’t always smooth, but he is moving towards his goal of graduating.

For most people, they would think that this is nice and move on. For Nick this is HUGE. He was diagnosed mildly mentally retarded in preschool. I had to fight that label as it was not accurate. Both the psychologist, who conducted the test, and his preschool teacher agreed with me that this was not accurate. It was ridiculous to put such a label on him.

It took three more years to get a correct diagnosis of autism. All through that time, we worked with Nick. We dealt with sensory issues and diet issues. Finding a balance of teaching and communicating was delicate, but we did.

Now Nick is moving forward beyond what anyone imagined. College! We are proud, and Nick’s hard work and perseverance continues to pay off!

To be considered for Phi Theta Kappa, the potential member must have a minimum 3.5 GPA. Nick enjoys going to their meetings and volunteering with them.

Happy 4th!

Several weeks back, Cameron, Nicholas, and I met up with my oldest sister’s classmate, William DeLuna. He captains a fleet of boats. He gave us a first class tour of the harbor and beyond. The boys had never been sailing out in open water, so this was an adventure. It did not take long for the boys to feel at home, and they dared to ask to steer the vessel. The good captain agreed, and he was quite impressed with their navigation skills. He exclaimed, “They’re naturals!” No sea-sickness. No squeamish stomachs. Just a lot of fun!

I do have to give Captain Bill DeLuna kudos for taking us. I advised him ahead of time of their history with autism, and that I had no idea how the boys would react, Nick had severe sensory issues, and his communication could still be hampered at times. Cameron had similar concerns, but no lack of communication. The Captain had no problems telling them what was permitted and what was not. He went through the safety drill and rules. Then the fun commenced.

We saw several dolphins, and we hoped for a whale or two. The boys were thrilled to climb all over the boat and watch the sails go up and down. They even had to dodge the sails a few times. No one had to yell, “Man overboard,” so I was happy.

I was totally surprised that Nick and Cam took so easily to the ocean. They felt at ease and thoroughly enjoyed the trip. Incredible!

Courage To Try

My sons are my heroes. Case study: Nick.

Nick has been invited to go ice skating tonight. He accepted the invitation. Then he turned to me and asked, “What do I do?”

Nick has never been skating. No ice skating, roller skating, or roller blading. For most of his youth, we have focused on his general coordination and balance as well as sensory and tactile issues. Nick was in first grade before he could tolerate shoes. He was in fifth or sixth grade before he could wear long sleeve shirts or long pants without prior conditioning. Nick had adaptive PE for most of grade school. Physical and occupational therapies were weekly occurrences until high school. Activities like skating were beyond what we ever thought Nick could do!

Today, Nick’s big brother, Mike, has lent Nick roller blades. I have spent the time finding how-to ice skate videos online and then implementing the concepts with roller blades. No, they are not the same, but the idea of balance is similar. For a kid who has not done any skating, this type of motion is unfathomable. However, Nick will not be deterred.

We started on carpet. Then we moved out to the patio. I led him. He tried alone. He fell. A few times. Two hours later, he’s moving on his own. Not graceful, but independent. He has taken one break, only because his little brother wanted to try.

Nick has put the skates back on and has been alone for about 30 minutes, just skating back and forth on the patio. Well, more of pushing and pulling himself, but he’s moving a bit better. All within a few hours.

I can’t believe he is so determined to learn so quickly, and go with peers to do something new. He truly is courageous. So many people fear failure and embarrassment. Nick’s desire to go out with friends and potentially have fun outweighs his concern of any negative outcome. That’s courage!

Hugs

My sister-in-law wrote, “Never under estimate the power of a hug. This simple gesture is not really simple at all. Its complexity in action and response makes it one of the strongest forces in the world, making it heal almost anything!”

A hug is how we found out about deep pressure, which helps relieve sensory meltdowns when my boys were young. It was one of those days when I was hanging onto sanity by a thread. Ryan couldn’t talk at that time. He wanted something and was going into a ballistic tantrum. I couldn’t figure out what he wanted.

At the same time, Nick was hungry and needed to be fed. Both kids chimed out, “MAMA!”

I gave Nick a quick snack, so I could focus on Ryan.

I was in tears, trying to figure out what Ryan wanted. I couldn’t solve the mystery. I ended up just hugging him really tight. At first, Ryan resisted. He didn’t like to be touched, let alone hugged. There were dents in the wall from Ryan leaning backwards to get away from people who wanted to hug him.

Within a few moments, we both calmed down. Then he hugged me. He was about four years old. I received my first hug from Ryan.

Later I mentioned this to Ryan’s adaptive PE teacher. She said they have weighted vests to help keep the kiddos calm. The physical therapist also said that deep pressure helps. She showed me how to apply it, and it worked every time.

Mamas On The Run

My mom and me

My mom and I have escaped to her hometown in Michigan. I was pregnant with Nicholas when I last visited my relatives, 18 years ago.

When I was growing up, my family and I visited Michigan every other year, on average. Our vacations always included visiting cousins, grandparents, and extended family. We usually drove throughout the country and stayed with family members. It was rare to stay at a hotel. The best parts of our vacations were not the activities or sight-seeing tours. The best parts were being around family, or doing those sight-seeing excursions with family.

I wanted to continue these outings with my own family. Unfortunately, travelling with kids with autism is difficult as their schedules are interrupted. Staying with extended family is tough because the relatives don’t quite understand what can trigger a meltdown or tantrum. Relatives are not usually aware of sensory issues or lack of communication skills my boys have.

In the last couple of years, we have started to travel with our boys. They have learned to adapt well. I have include them in planning, so they will know what to expect. They usually look forward to the adventures.

This trip is without the kids. Unlike most vacations, this trip has a purpose: to see my Godparents, who are my mom’s brother and sister-in-law. Too many years have sped by, and we are all much older. Most of our time is spend sitting and chatting, catching up. Not the type of activity that my boys could endure for long. So, it’s just my mom and me.

photo credit: Michelle Nicolai-Hoffmeyer

I Can Do It!!

Cam

I love hearing my sons say that. For too long my sons were hampered with sensory issues and lack of coordination, symptoms of autism. Years of therapy have yielded young men who are capable of doing–doing what they want.

Stu–at the end of the day

Simple things like holding a pencil or crayon or running without falling were difficult or impossible. Now my sons are doing tasks that neuro-typical teens do without thinking twice about it.

This is not to say that my boys don’t have sensory issues. They still do. However, they are not as sensitive. They know how to handle and resolve those issues. That is powerful.

Over the weekend we started painting. Usually, that would be a project that I would tackle alone. This weekend the boys all joined in the fun. They had paint on their hands (tactile zing), in their hair, on their clothes. One even stepped in the paint and lived to tell about it.

It became a family affair. Grandparents, husband, kids, and I. We finished the job that day. The boys cleaned up. They stuck with the job. Incredible!!

Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii! What a year it’s been to get them there.

We found out last February that the marching band at Nick’s high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade. Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions. This year Nick’s high school band placed third in the state competition. Tons of hours practicing. The band meets at 6am every weekday morning before school. Then they have evening practices and weekend performances and competitions. BUSY.

Marching in parade

Then the fundraising to get Nick there. The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating. Nick wrote many letters to family and friends to help contribute to his account. So this endeavor is the result of many. MANY.

Once funding was successful, another contingency surfaced: supervision. We did not trust anyone with our child. Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult. Mike and I had no idea how Nick would react being on a plane. Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications. The only acceptable solution was for Mike to be a chaperone. I was told that “the IEP would be taken into consideration when choosing chaperones”. That did not give me any consolation. Then came the email from the band booster president that a lottery would be held to pick chaperones. I was completely on edge then.

After several correspondences with the band teacher and Nick’s case manager, I made it clear that the only person who would be appropriate to help Nick was his parent. A fellow class mate or another adult would not suffice. ESPECIALLY if some emergency happened. They couldn’t just call us, and we’d be there within minutes or even hours. This was a safety issue.

I am not sure what conversations were held on Nick’s behalf when the selections of chaperones were picked. When the list was publicized, Mike’s name was on it. Relief. Now we had to come up with the funds for Mike. As always, money was not going to stop us from pursuing something that would benefit Nick. Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime. Yes, there’s a lot of “behind the scenes” that I did to help make this work. Lots of mental preparation for Nick. Not just band practice. Practice sitting in close confinement. Practice talking softly. Practice…

I think the effort is worth it. Nick’s smile says it all!

O Happy Day!

Ryan about to serve

In the midst of trying to resolve issues, there is a bright light. AND did we celebrate.

Ryan and Nick played in their first tennis match on their high school tennis team. Ryan tried cross country, but the endurance was too much. I bet the desert heat didn’t help during the summer either. Nick did track and field in junior high, but his heart belonged to an event that he didn’t get to do.

Mike and I have introduced various sports in the past. Some were too expensive to continue. Others just didn’t capture the boys’ interest. So why tennis?

Nick returning a serve

My parents have played tennis for as long as I can remember. I tried playing, but I spent more time running after the balls that went over the fence than playing on any court. The boys had a few lessons from their grandparents when the boys were very little. What made it stick this time? I don’t know. I don’t underestimate that the girls’ team might have some influence. The girls and boys’ tennis teams practice at the same time. Hmmm.

What I do know is this is a HUGE milestone for the boys. Many years ago, the boys had several issues to overcome. Nick couldn’t stand to wear socks, let alone shoes. As they developed autism, their gait became abnormal. Walking and running were dangerous. They lost their balance easily. Ryan ran with his eyes closed. I was told this was a sensory issue.

Ryan serving, Nick at the net

I became a soccer mom of therapy. Days on end of traveling from school to therapies–physical and occupational therapies (among other therapies). I made sure they had adaptive PE in school. Years of therapy. Miles of driving. With no guarantee of improvement. Just hope.

Today is hope fulfilled.

Coach W with Nick

Ryan and Nick played in a real sport at school. Their matches were even next to each other on the court. They played in the singles and doubles. They were actually the doubles team. The coach guided them at times. Otherwise, they played. On their own.

Those years of therapies have paid off. My boys may have a hobby for life! Priceless.

Autism: Many Travel The Road

Autism: unknown road full of twists and turns

Last week I received a call from my aunt about her grandson being recently diagnosed with autism. She asked for some general information.

Two emotions go through me every time I receive a call like that. The first emotion is sadness for the child and the parents, another family having to face the difficult road of autism. The second emotion is hope, but where to begin, meaning what information can I quickly give my aunt? There is so much. It’s a daunting task to quickly assess and surmise what information will do the most good.

Also, within the last weeks we had Ryan and Nick’s IEP meetings. (To my dear aunt, that stands for Individual Educational Program, which briefly is the meeting of parents and school staff to determine classes, goals, therapies, etc. for Ryan and Nick.) Anyways, I was touched by what Nick’s case manager said. She said that her son has autism. Although he isn’t a high functioning as Nick, she hopes that her son will be independent enough one day to enjoy a hobby.

I am moved by both of these events. One family is at the start of autism; they probably have no idea what is ahead of them. Another family is traveling the road of autism; they have some idea of the future.

Then there is my family. We’ve been on the road for years. We must be having some success because others see our boys as “not that severe” or “high functioning” or “borderline”. My sons were not diagnosed with autism spectrum or high functioning autism. They were diagnosed with autism. They had many symptoms: ticks, sensory issues, processing issues, dietary issues, etc.

After years of tons of therapies, life is improving. It takes time, but the more done early on, the better chance for the boys to be independent. Ten years ago, no one would have foreseen my boys as high functioning. Even five years ago, things were tough.

To my aunt, I don’t know if you remember on your wedding day, I was in tears at the reception. It was autism related. The boys did have some issues, and it was difficult to handle. There was also miscommunication with my husband, which didn’t help. Being in public is a challenge, but doable with a lot of patience and prayer.

To my son’s case manager, keep plugging along. You just don’t know what the potential is. I’ve been asked when will I recognize that my boys’ have hit their potential. I answer, “The day I die.” Not to be morbid. Tis a fact of motherhood. I love my boys, and I’ll stop at nothing to help them. Of course, that also includes stepping back and letting them fall as well as pushing for that next slight step of independence.

There’s no guarantee of anything in this life of autism. Lots of hope and prayer, along with diligence, persistence, and patience. When there is that step of progress, oh, what JOY we share!

photo credit: http://www.flickr.com/photos/geodesic/

Autism and Sensory Issues: Cacti Garden

In the Southwest, this is the perfect time of year to enjoy outside activities. The boys agreed to pull out a huge, dead vine and put in a cactus garden. The dead plant didn’t receive enough water, so what else would make sense but to plant items that don’t need much water?

Secretly, I had an ulterior motive. I have noticed that some sensory issues are creeping back. It has been over a year since Ryan and Nick have received any occupational therapy. This type of therapy has helped them overcome a vast array of sensory issues. For example, they can now wear jeans. When they were younger, all they could tolerate on their skin was cotton. Jeans were too itchy and heavy for them. It took about 5-10 years for them to overcome clothing issues.

Anyways, at the autism conference last month I noticed Ryan could not wear his name badge. It was attached to a cord that was suppose to go around his neck. It lasted 10 minutes on his neck. Throughout the day he tried to wear it because it was “required” to get in and out of the conference rooms. Nonetheless, it never stayed around his neck for more than 10 minutes.

To deal with the sensory issues, I decided to use soil. However, I needed to be creative. The boys are not big fans of “therapies”. Thus, the idea of a cactus garden was born. Dry dirt, wet mud, hard clay, icky weeds, and dead vines were attacked today. The boys tolerated most of these items as long as I kept them busy. If one stopped with the chore, suddenly the gunk on his hands bothered him. Each one wanted to take a break and wash his hands. I knew if they stopped, there’d be no getting them back on task. Consequently, I was a benevolent dictator today.

I worked side by side with them. Cut, pull, dig. It took a few hours, but we finished pulling out the weeds and the dead plant. We filled two garbage cans with the debris. I was amazed at how well this team of autistic teens worked together.

After cleaning up and eating any food available, we went cacti shopping. We found a wonderful array of inexpensive succulents and cacti. Nick made the request for blue plants, and we actually found two blue cacti. Cameron found a beautiful plant called a silver torch. Cam discovered the soft, white “cotton” on the cactus belied the hidden sharp spines. “Ouch,” he exclaimed with astonishment.

Tomorrow we plant the new arrivals! I have a feeling tomorrow will bring a new round of sensory issues: planting and avoiding the spines.

photo credit:Clinton Steeds’ photostream (200)