Life’s Unexpected Moments

 HAPPY NEW YEAR! I recently went away with my family for New Year’s Eve which involved spending the night away from home. As a family we have done this a few times. I showed my twin sons online where we would be staying and the different activities we would be doing while away. They both seemed happy and we marked it on their calendars. We planned this about a month in advance in the beginning of December. Like everyone else December was a crazy and busy month for us which entailed getting ready for the holidays with all the extra baking, cooking, decorating, and shopping, etc. Christmas is my favorite holiday so I tend to go to the extreme with all of that. We also unfortunately all at varying times caught that severe respiratory bug that was going around which made preparing for the holidays even crazier. I say this because I was a bit exhausted and hadn’t fully recovered from all the holiday hustle and bustle so when it came time to prepare for the overnight trip, I was a bit tired, but still looking forward to spending the night away with my family. On the way to the hotel as it was several hours away, I had that experience of feeling like I was forgetting something. I mentally went down the checklist of things. I had packed all essentials including dietary specialty snacks as there was a restaurant nearby where we were going that could accommodate my sons’ dietary issues. My sons had their iPads with them. I had double checked that all appliances were off before we left. My dog was left at his “sitters” (my parent’s home) as the hotel was not dog friendly. Something kept nagging at me which is when I realized that I forgot to bring the social story that I had written regarding elevators. One of my sons has had some ongoing issues which developed in his teens out of blue with getting on elevators. I was in that place where only parents of kids with autism sometimes find themselves to be, whether to address an issue or not as it could bring up more issues. When a child has not been exposed to something that they have reacted negatively to and they will experience again, I have found it typically is best to prepare them as much as possible. Every child on the spectrum is different. Though this depends on the child, as some kids build “negative associations” with these experiences and have a difficulty moving past them. I was hesitant about bringing it up at this point. I felt it would possibly result in him being overly anxious about using the elevator. We arrived at the hotel with me second guessing my decision not to say anything. Well, this is what happened next. I was trying to nonchalantly observe my son with the elevator issue. The elevator happened to be near the entrance we walked in. I pushed the button and the elevator door opened and my son was actually getting in the elevator much to my relief. Well, as I looked back his twin brother had a look on his face like I am not going in that elevator. Go figure! Sometimes that is what happens in the world of having more than one child with Autism. After trying several times, he refused to get on the elevator so he walked up the three (thank goodness!) short flight of stairs. Preparation works best for him while for my other son it’s best not to prepare him too far in advance as this adds to his anxiety. Fortunately, the rest of the trip went well. I thought about this afterwards and while it is always an adventure with my sons when we travel, it made me realize sometimes life offers up experiences like these to help us understand the importance of being flexible with our kids and not pigeon hole them into just having specific issues or assigning them with specific difficulties. My sons definitely helped to remind me of this on that trip.

Christmas, used gifts and my side of autism

Cassie Ricco

Let’s start by saying I love Christmas.  I love everything about Christmas.  The music, decorating, the food, but most of all buying the gifts for my loved ones.  I love seeing how happy they get opening their gifts, and seeing, what inside all those shiny boxes.    Now how does autism affect my Christmas shopping you ask?  Well, my son Parker, age 14 has high functioning autism and every single year the child asks for things that I have to buy used and online through eBay or other websites.  No problem right!  Except when the things he wants are from China and the order does not come in until well after Christmas.  I have had to print out pictures of what was coming and wrap them.  This did not always go well.  Can you blame him for having a meltdown when he wants a specific Thomas train and got a piece of paper?  Really Mumma!  I remember one year he wanted a vintage (used) Kermit the frog puppet the one where you put your hand in his mouth and you talk for him.  It was the only thing he talked about for months.  I search months to find that silly frog and every time I found one I would get out bid in the last two seconds.  I kept searching and bidding and finally won one.  I paid for it and went about the rest of my Christmas shopping.  I was so happy I was finished a few days before Christmas.  I wrapped my gifts and waited for the very special day.  It finally came and everyone was so happy except my Parks.  He did not get his Kermit.  I made a bunch of excuses saying it must be lost in the mail.  To my surprise he handled it very well.  I still have no idea what happened to that Kermit.  I am not sure if it came and got misplaced or if it never came.  Flash forward to the present.  I get his list at the end of September so I can make sure I can get everything by Christmas.  I used to feel bad about buying him used gifts for Christmas, but the reality is they do not make what he wants new anymore.  On Christmas morning he is always so super excited to open up his twenty-year-old Pokémon game that I bought used for double the original cost.  However, now I always make sure I check to see if my item was shipped and received.  I would now like to eBay and the internet for making this a possibility.  Merry Christmas and a very happy New Year.

Turning 18!

This past year has been extremely busy!  My son with ASD turned 18 at the beginning of the Summer and that event sent my life into a whirlwind of things to get done.  It looked a little something like this:

  1. Prior to turning 18, I had started the application process with DDS to reapply for my son to be eligible as an adult. I was fortunate that this timeline coincided with his 3-year evaluations at school, so a lot of the requested information was taken care of with this testing.  If your child is around 16/17 you will want to reach out to your DDS family coordinator and get the information you will need about this process.
  2. Since my son will be unable to get his license, I took him to the DMV to get a state identification card. I found out I could have done this at the age of 16 but we got it done and it was fairly easy.    Check out the DMV website for all the details.
  3. A couple of weeks prior to his birthday, I started the process to apply for Social Security for my son. I am glad that I did this prior to his birthday.   If I had waited until after he turned 18, they would have not talked to me because I had not yet received guardianship for him.  With his approval for Social Security, he automatically received MassHealth insurance – no application process needed thankfully!
  4. This is a very personal choice.  It was the best fit for my son and his needs.  I got all the forms online from my local probate court and was able to do this process on my own.  I would not recommend this for everyone, but for me, it worked.

The Summer was all about paperwork and forms.  Luckily, it was never too overwhelming but it does force you to get organized and know where all the documents you need on your child are located.

The highlight of the Summer for me was my son’s 18th birthday party.  It was the first party we had ever held for him that was held outside the home and attended by friends and family…. not just all family.  What a night!  It was fun and sort of a celebration for me and my husband.  We had survived the last 18 years and were better for it.  It was as if the past 18 years had all come together in one night with family, old and new teachers and current friends!!  I friend of mine but together a photo album for my son.  When each person arrived at the party, we took their picture and handed them an index card to write my son a birthday message.  After the party, she put all the photos and index cards together and formed a photo album that, 3 months later, he still looks at daily with a smile.  I wanted him to have a visual memory of this party and it was the perfect gift!

I guess my hope in writing this blog is to get the wheels turning for parents/guardians of children with ASD who will be celebrating their child’s 18th birthday soon.  It is a time of a lot of change and the sooner you can get a grasp on what may need to get done, the easier it will hopefully be for you and your family.

The Things You Miss

The Things You Miss

Patricia Leonard-Toomey

Many years ago my husband and I decided that the best thing we could do for our family was to have our daughter Devon remain living at home with us for as long as possible.  When she was 3 years old we were advised that having someone with such significant behavioral concerns remain living with her family would be a difficult thing.  We were basically told that we would never have a “normal life.”  As time progressed we were reminded at least one time per year that a residential option would probably be best for “the family.”  We always declined.  Devon is 30 years old now and still lives at home.  It is never easy, but this was and is our choice and we take it one day at a time.

In my position at CAR, I often hear of families who take vacations with their children, of opportunities available to them because their kids can fly, stay in hotels, stay with relatives while the parents go away, stay with caregivers while the parents go out at night etc.  I am always happy for them, but I know with certainty that there are others like me….people who have never gone on vacation with their families, people who except for one time per year [thank you CAR hayride] who are not out after dark…people whose children must sleep in their own beds every night with the night routine down to a science where nothing can ever change.  Every family has different challenges, but sometimes I think we have to acknowledge that there are many people and families who are restricted from even the opportunity to “relax” or have a day away.

Please note again, that I am not complaining.  It has always been our decision, and I cannot envision a life without the day to day interaction with my daughter, but once in a while the things I miss out on become a little bit overwhelming.  Some of the things you miss are wonderful family events, some are difficult family events.

For example, I was only able to attend 1 ½ hours of the 4 hour wake we had for my Mother.  I had to get home to meet my daughter.  I did not have an opportunity to attend my Father’s wake.  The weather was a factor in this, as well as my daughter’s serious upper respitory infection.  I did make it to the funerals.

I missed my older daughter’s graduation from Medical School and Match Day because she was in Chicago.  I did not have a chance to attend the rehearsal dinner for her wedding even though it was in Providence, because we felt it was more important that I be at the wedding.  It was a beautiful wedding and I was so happy to be there for the entire event.  Devon had a great time too.  My older daughter was not alone for any of these events.  My husband and my father were always there for her, but it was still hard for me.

Over the summer I became a Grandmother to the most beautiful Nora.  She was born in Texas and in August moved to Kentucky with her parents [my daughter and son-in-law.]  Their careers as a Developmental Pediatrician and EP Pediatric Cardiologist have dictated where they live.  Because we cannot travel and they had to move across the country I have never met my Granddaughter.  I can Face Time and Skype and I have many pictures and videos, but it is not the same thing.  I want to hold that beautiful baby in my arms.  I know it will happen someday, it is just hard to wait.   Some days the restrictions I have on my life are harder to accept than on other days.   This major event was just another reminder of some of the things we have missed.   I know I am not alone in this and I believe it is important to acknowledge some of the more difficult and maybe unexpected issues some of us face at certain points in our lives.

 

 

The Essence of a Person

A person may have Autism, but Autism does not define them. Too often all the traits that a person has, every behavior they exhibit is attributed to the person having Autism. It is like the person loses his/her personhood and becomes an “Autism”..We each have many traits but they never define us.

This is one of the messages that Eve E. Megargel communicates in her book entitled “Learning To Kiss”. In the book she shares the life story of Billy, her son with Autism, and the impact of complicated and difficult to determine medical issues he has, the manifestations of which were too long attributed to his having Autism.  Woven into the story is the growth of Billy’s abilities to be a communicator, from learning to form the physical act of a kiss as a way to develop connection, to becoming a competent communicator with a speech output device. Billy’s ability to develop his communication skills was dismissed as something he was not capable of. Fortunately, his family did not agree with that thinking, as his ability to communicate became crucial as they worked with his serious health issues.

My husband and I heard Eve speak at a presentation of the details of the family journey written about in the book.  As our son had gone through several years of pain issues due to health issues and difficulties in communicating effectively about them, we related all too well to the Magargel family’s experiences. It was an emotional rollercoaster seeing a son in pain and struggling to understand what was wrong. There is a profound grief in knowing that your loved one is not well and in pain and struggling to find answers from doctors. Thankfully, we found some doctors who were willing see our son’s behavior as communication of pain and struggled with us to find the physical issues causing the pain. Others with Autism are not so fortunate.

Early on, when an educator’s stated goal for Billy’s education was to learn to comply, Eve advocated for Billy’s right to have his education address his need to learn to communicate in more effective ways, and to be appreciated as a person rather than being defined by his Autism. She persevered in her quest to make sure that her son was not underestimated because he could not talk and struggled in a world that was often confusing and at times overwhelming.

People with Autism just like all of us, need to have opportunities to develop their skills and talent. We all want to have people take the time to understand our communication and be responsive to our feelings and needs.  We all thrive through meaningful relationships with people who value us. It takes letting go of our fixed concepts and ideas of who a person with Autism is, and what they need and being open to learn what is meaningful to them. Communication is so much more than spoken words. How we regard a person with Autism is communicated to them not solely by our words, but by how we relate to them. Eve writes about individuals in her son’s life who took the time to really see and know her son. Billy blossomed in relationship with them. Throughout my son’s life I have seen how my son has blossomed in relationship to people who are able to reach out to him in ways to which he can respond and who value him. The dance of these relationships is a joy to behold. These people will tell you they get as much as they give. Each is enriched by the relationship.

May we all have people in our lives that are there through the good, the bad, and the ugly. People who see us as we are, not as who they think we are or want us to be.

The 5 Hardest Things about the New School Year

Community Autism Resources is pleased to have a Guest Blogger this month.

Matt O’Keefe provides his perspective on returning to school.

Matt O’Keefe is a freelance writer whose clients include a vocational school for those with learning differences Minnesota Life College, personal development site Lifehack and entertainment news blog The Beat. Visit mattwritesstuff.com for news and musings.

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Starting up school again is daunting for a lot of students. They’re transitioning from a system that they slowly grew accustomed to over nine months, followed by a summer off, to now face a brand new status quo. Having learning differences compounds the struggles of a new school year, which is why parents of young adults who have them should be aware of what their loved ones are going to have to learn to deal with. Here are five changes students, like the ones at the vocational school Minnesota Life College I write for, will experience in a new school year, as well as some quick tips on how to handle them.

  1. New teachers

What kind of teachers they have drastically impacts how well students with learning differences will adjust to the new school year. One possible strategy for making that adjustment as smooth as possible is to be very open about your loved one’s learning differences. If you have any control over the selection of the teachers, look for people sympathetic to your plight. If you don’t, at least let the teachers know what kinds of things they’ll need extra help with. Not all students and parents need to have a close relationship with their teachers, but you and your young adult likely will.

  1. New schedules

In a single school day students typically have to go to around five or six different classrooms. Students with LD will often struggle to remember where to go and when. The solution to this problem is a pretty simple one: writing it down. Your loved one can use a notecard, piece of paper, phone, etc., to record when and where their classes are. If needed, you can even help your young adult draft a map of the inside of the school.

  1. New subjects

Every year of high school usually sees some kind of change to the curriculum. The hope is that teachers will take the time to introduce students to new subjects at a manageable pace and make the material exciting for them, but that isn’t always the case. If your loved one is struggling to get a handle or interest on the new subject, you can teach it to them with something other than the assigned textbook. For example, if your young adult is struggling with Biology class, show them Planet Earth. Give them something that gets them excited or invested in what they’re learning.

  1. New social groups

Possibly the most difficult change for students with LD that occurs each quarter or semester is the change to the group of classmates they’re paired with. That frequent mix up means new social situations on a regular basis. There sadly isn’t much you can do to manage this other than teach your young adult the social schools to befriend or at least get along with the people they’re sharing a class.

  1. Increased responsibilities

Moving up a grade generally means that you’re going to have more homework, increasingly difficult tests and all kinds of other challenges. Hopefully the incline isn’t too steep, but if your young adult is having trouble keeping up with their new responsibilities there are a few options out there for you. You can remove parts of their schedule that aren’t as paramount as education, like extracurriculars. You can take advantage of tutor programs. Or, again, you can open up a stream of communication with your young adult’s teachers to learn directly from the source what will benefit the student.

A new school year isn’t always a smooth transition. For someone with learning differences it rarely is. Hopefully this list does something to help prepare you for it!

“Kid’s with Autism don’t make friends or have meaningful relationships with family & friends. Trust me!”

Does the title of this blog infuriate you and/or make you upset? I’m going to guess, yes.

Several years ago, when my son Jayden was about 3 years old, a woman approached me while I was working. I was wearing some sort of Autism Awareness t-shirt, as I often do. She very nicely asked me if I knew someone with Autism. I told her that my son had ASD and so did my cousin. We spoke for a few minutes after that.

She mentioned to me that she was a retired Special Education teacher and taught a number of children over the years with ASD, but there were far less diagnosed throughout her years of teaching then there were now. We spoke about school services and a parent/guardian/caregivers role in advocating for children like Jayden. She asked me how old my son was. She told me that I seemed to have a lot of knowledge early in my sons diagnosis regarding services and advocacy. I thanked her.

Here is where the conversation took an unexpected turn..she said this, and I quote, “You’re a young mom. Your road will be long and exhausting. There are places you can put your son and be able to visit with him as often or as little as you’d like. Kids with Autism don’t make friends or have meaningful relationships with family and friends. Trust me! I taught these kids for years. It’ll be much easier for you to live your life at your age. You should really consider it!”

After I processed everything this woman had just said to me, I was FURIOUS! I was hurt! I was upset! How dare this woman, that I don’t even know, say such untrue and hurtful things to me? I said quite a few not so nice things to her in return for her “advice.” The conversation ended immediately following my response.

Do I know what my options are as a parent to a child with a disability? Yes, I am very aware! Everyone’s circumstances are different and unique. Each family has to choose what is right for their child and their family.

To me, she was suggesting that I throw in the towel on my newly diagnosed son and look into residential options for him because it would make things easier. Make things easier for who? I hadn’t even had a chance to live in this new world with my beautiful boy! At some point in time, Jayden will be older, and so will I! I may not be able to provide the level of care he needs anymore and I may have to look for other living arrangements for him. When that time comes, I will cross that bridge and make the best choice for him.

The thing that upset me most, besides her complete ignorance, was that this was a person who once taught children like my son. For her to strongly imply, “Kids with Autism don’t make friends or have meaningful relationships with family and friends. Trust me!”, made me so angry!

Jayden enjoys his time alone, doing his own thing but let’s face it, so do you and I! He may not play with toys the same way his cousins and friends do…he plays with them his way. He may not sit down to play a game without guidance but one thing is for sure, this boy LOVES with his whole heart!

The relationships he has with his family and friends are pure! He loves to be around them! He hugs them, kisses them and plays with them, his way! He has formed and maintained many relationships over the years with the people who put themselves in his life, seamlessly. These relationships are not forced. I can only speak on Jayden’s behalf, but I know this holds true with many of you reading this.

Our journey is far from over. Our road has been long and hard. The best days of my life have been spent with my sweet boy and I would not give up a single day of seeing his beautiful smile.

Jayden is a non-verbal child but the smiles and love in these pictures of him with his family & friends, need no words!