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#Thank You

It’s been exactly one month since our amazing event.  We were overwhelmed with everyone’s generosity and there are many people to thank;
THANK YOU TO Duke for walking 100 Miles, YOU are my hero!
Thank you Kerri, for your friendship and your help every step of the way, we couldn’t have done this without you.
Thanks to our “go to guy” and event planner, Jack Teal;  and thank you to our old friend Greg and his band Classic Trax for the rocking tunes.
Thank you to the Teamster’s Local 25 for their support and very generous donation; thanks to all of our friends and family who came out to walk with Duke (during the day, through the night and in the rain!) and for your help working the event (Sue, Elaine, Janell, Sue and KJ, Mrs. Stone, and Julie)
Thank you to the Malden High School football team, what a great group of young men, my hometown team made me proud!
A big thank you to our friends from NuPath for coming out to walk (hello Sebastian and friends!) and thank you to Malden Mayor, Gary Christensen for your support and joining us on the walk.
Special thanks to Joe Levine from the Malden Stadium Commission.
Thank you to our very special Angels for Autism for their love and support.
Thank you to all of our generous donors and sponsors.  We are truly, truly grateful.  I hope I’m not forgetting anyone…
Over the past month, I reflected on the fact that a great deal of time and energy went into working and preparing for the 100 mile walk and the post walk celebration.
I’ve lived long enough to know that when you commit your time and energy to something it always comes at the expense of something else in your life…always.
I am grateful for amazing friends and family who gave their time and energy.  I am grateful for Joe and Matthew who helped pick up the slack at home when I was running in a million different directions.  Special thanks to my beautiful daughter Ashley who inspires and humbles me everyday.  Sometimes other worthwhile obligations help to put important things in perspective.
“When you give someone your time, you are giving them a portion of your life that you’ll never get back. That is why the greatest gift you can give someone is your time.” Rick Warren

#Positive Spin

As an autism parent I have learned the art of living in the “positive spin.” I find myself spinning positivity more often now when it comes to Ashley and her development.  She is maturing.  She is progressing.  That is true and it is positive. What I don’t really talk about is that the maturity and development is slow and as she gets older her delayed development is harder to spin positively.  It’s especially hard when you have friends/family with children who are close in age to your autistic child.  It’s easy to spin when they’re younger, the differences don’t stand out as much then.
Then they grow, and you see the differences, they stand out more and more.  You’ll notice these differences and mourn for what you don’t have.  It’s difficult when I’m having conversations with Ashley’s neuro-typical friends and family members now.  They are talking about their boy crushes and how they handle the struggles of after school activities and academics and I LOVE being a part of these conversations because I love these girls, but I wish I could be having these conversations with my own daughter…and it makes me sad.  (This is when you would say, ” Don’t be sad, you never know, she might get there.” And I politely agree and come back to the “positive spin.”)  But realistically, she may never be there and we all know it.  And then I feel guilty for feeling sad at all because she is my daughter and I LOVE her more than anything, so the positive spin is often where you need to be as an autism mom.
Friends and family try to understand and say the right things and while you appreciate it (this is the tricky part) you also don’t like it because you don’t want them to pity your situation.  She is a terrific kid after all, so don’t pity me.  It’s difficult, I understand…a no-win situation really; too much pity is no good, but not trying to understand what it’s like to be in my shoes isn’t okay either.
Then I  feel guilt because there are people who have kids with terminal illnesses who won’t live to see their 13th birthday and you understand that there are worse heartaches in the world.  I feel so totally blessed to have the beautiful girl that I have and she is making progress… but then you get on social media and see the athletic competitions, drama and musical productions and wish that she could be doing what other girls her age are doing, but she can’t because her behavior and lack of flexibility gets in the way.  So you go back to the positive spin… and tell yourself that it’s just as well.  You aren’t really interested in being that stage mom anyway (even if you secretly wish to be) and there it is.  You try to live in the positive spin, but your house is built in reality.  Some days are just easier to spin than others.

#Smile

Today’s guest bloggers are two 13 year old girls that are close to my heart.  Anisha and Lily are two of the dearest people in Ashley’s life.  Anisha is Ashley’s cousin and Lily and Ashley became friends in the 2nd grade.  The three of them are like sisters.  They understand Ashley better than most.  They understand her triggers and quirks and they genuinely love her.  They laugh at her silliness and consider her a true friend.  This picture was taken yesterday and Ashley had a couple of loud outbursts, the kind that make most people stop and stare.  But Lily and Anisha didn’t skip a beat, they gave her the space she needed and accepted her right back into the fold when she returned.  It makes my heart so full to know that these two girls exist on the planet.  I love you both so much!  Thank you for your beautiful blog. ♥

Different is good. Life without any variety would be colorless, music- less, and lifeless. We can’t imagine that. The world today has different people, each unique and amazing in ways you may not believe is humanly possible. Friendships are a way to connect to these amazing people and learn more about them and even yourself. Good friends bring out the best in people. Ashley brings out the best in us.

Ashley brings so much life to our group. She tells the funniest jokes, and makes us laugh about things that no one would ever think of.  She can sing notes that most people can’t reach. Not one person in our group of friends is the same, yet we all are best friends despite our differences. Our differences keep things interesting. Everyone wants to be friends with Ashley.  Do you blame them?

Having a friend like Ashley is so amazing. Everyone needs an Ashley in their life. When you are having a bad day, she lets you rant and just express yourself. You can be as weird and awkward as you want with her. She would never judge you. She automatically makes your bad day into a good day.

Ashley is strong even when things aren’t easy for her and she can make anyone smile. We all try to be strong, but we are all human.  Something us humans need to do more of is smile, and help others to smile. Ashley taught us that, not just through our words, but by our actions. Making people smile is an ability we all have.  Smile, try it. You may surprise yourself. Ashley smiles all the time and shares her happiness with everyone.

“Those who bring sunshine to the lives of others cannot keep it from themselves.” -J.M. Barrie

Thank you Ashley for bringing us sunshine.

-Lily and Anisha

#Marriage

Most people don’t understand the experience of raising an autistic child and fewer understand how the responsibility of care can affect a marriage.
A few years back I read a statistic that stated 80% of parents of autistic children get divorced.  Recently I learned that there is no real data to support that. However, experts agree that the stress of caring for an autistic child can be significant. What makes autism different is that there are enough individuals with autism who have been responsive to therapy and made great gains.  So it makes parents like us feel like we have an obligation to try and do everything in our power to help our children function better.  For some couples, the stress of this can have a negative effect on their relationships. The opposite can be true for other couples and they can actually thrive as they unite through this unique experience.
Joe and I learned early on that we had to decide how much autism we would let into our lives. That probably sounds weird, but if you know anything about autism you would know that there are many possible theories and treatments for autism popping up everyday. We would need to decide what would be best for Ashley based on many different factors (and a great deal of research!) with the most important factor always coming back to what would work for her and for our family.  Autism has caused us to face a great deal as a couple.  We have needed to become experts about our child but also about educational rights and policies, the healthcare system, early intervention, insurance laws and fighting for out of district placement. Through all of it we have relied mostly on each other.  It hasn’t always been easy, as the mom I have taken on the role of Ashley’s personal case manager.  If I’m being truthful, there were times I felt resentful for having to carry the burden of that.  What is equally true is that if and when I asked for help Joe would step up, often offering a better understanding of whatever material I was looking at or researching. He is the yin to my yang and we’ve always been able to work together to resolve issues or conflicts.
Another statistical stressor on the marriage is the cost of autism. Autism costs a family, on average $60,000 a year.  In the United States the cost of autism over an individual’s lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability.  Parents, like myself, must often step away from their full time career to manage their child’s therapy schedules, evaluations, school pickups and school meetings.  This often places more of a financial burden on the spouse. (Joe would probably agree although he is not one to say it out loud.)  All of these things were true for us and continue to be. I mean, let’s be honest, Ashley’s autism isn’t going away. Like many autism families, the financial concerns for ourselves and our children are very real.  I’m tempted to think that couples who already have a challenged marriage may not survive raising a child with autism.  Conversely, some couples find their bond becomes stronger because of the need to pull together and unite in the fight for their child.  The totality of Ashley’s existence is NOT her autism. She is a smart, cute, funny, beautiful young lady.  The same can be said for me and Joe as a couple.  While we are currently working hard to draw attention and assistance to this most worthy cause, but we remain (I think?) a fun and happy couple; hanging out with friends, enjoying our summer, spending time with our family and each other.  We try to find the balance and try to be careful about how much autism we let into our lives.  It’s a balancing act for sure, but we are lucky to have each other for the journey.

# Re-routing 

Today’s guest blogger is one of my dearest friends.  We met as college co-eds 30 years ago and boy, we had some fun times.  So many great memories, we still talk and laugh about today.  Almost 14 years ago we gave birth 10 days apart, she had her beautiful first born son and 10 days later we had our gorgeous baby girl.  I firmly believe that God brought us together in that campus dining hall because he knew that we would need each other so very much in the years to come.  Both of our sweet kiddos, born 10 days apart, would be diagnosed on the autism spectrum.  Like many parents of kids on the spectrum our struggles have been the same and different, but she has always been a source of love, support and strength for me and I admire her more than words can say.  Please say a prayer for her and her sweet boy.  Her pain and struggle is real and so very hard.  I love you girl.

It’s not like I am not used to being disappointed; being a mom to child on the autistic spectrum, disappointment comes in a steady stream. But, quite often it’s disguised as the usual parent-child dyad “dealing with the world” disappointment that everyone needs to recognize and plan for when parenting. But, when this disappointment is gut-wrenching, “crawl under my bed and stay there for a while” disappointment, “any and all bets are off” disappointment….then, it’s time to re-route; no stopping at the next rest stop, then moving on to your destination….no, completely changing your route and/or your destination, and that is where I find myself at this moment.

It wasn’t enough to move through the first two years of middle school with the constant “discipline” requiring detention, in school, and out of school suspension. It wasn’t the complete and utter lack of any sort of cooperative planning, it wasn’t even the loose tongue of the school counselor who shared that the goal of the administration was to force my son out of district. No, it was the ostracism, and the pure and venomous anger that bubbled up to the surface and was directed straight at my family….my family. So, just as our country is now dealing with the gut wrenching disappointment in humanity that has bubbled to the surface, so am I with the knowledge that my comfort zone, my community,  has chosen to expel my family in order to best meet the needs of the majority. I can use the word expel because it was that exact word that was used by parents/students in a request made to school administration in regards to my son….he should be expelled. Wow.

So, this year, I’m re- routing, soul searching, and seeking the wisdom of others rather than shopping for school supplies, and I have to say that without the support of my dearest friends and the online disability community, I’d be lost. But, thankfully, there are roads that have been traveled by others, and maps that have been crafted to guide the lost, and I am slowly charting a new route to a newly defined destination. And, as I do so, I am realizing that within this imperfect world, filled with hatred, resentment, and the worst that human nature has to  offer, there is the equally strong force of compassion, conviction, and the absolute beauty that human nature can radiate. So, I am not exactly sure of the destination yet, but I am taking each and every hand that is being offered and considering each and every wise word that is being shared and moving on….re- routing….I’ll let you know the way when I find it.

#School

Anyone who knew Ashley as a student in our public school system knew that she got mad occasionally.  She would try her best to hold it together, but sometimes that autism pops out. As the years went on her needs changed, her issues were different and things became more complex socially, academically and in many other ways. If she were still in our public school system she would be getting ready to start the 8th grade. It’s an exciting time, the year before high school. It would be her last year of middle school, she would be the big cheese on campus. But more than a year ago we made the decision to change things for her.  This time last year, when she should have been starting at the middle school and going into 7th grade, she started at a new school instead, a school for kids with autism.  Middle School is a pivotal time in a child’s life, it’s when they start figuring out who they are, what they like, what makes them tick. They have stronger ideas about who they like and who they want to associate with. Kids this age can make poor decisions and succumb to peer pressure or find their niche in sports or in a school club. Some students are carefully planning which courses to take to set them up for success in high school and college.  They are starting to think about their dreams and ideas for the future.
Things are different for Ashley. She has some of those same dreams and ideas, but she is different, she does have autism after all.  Her path to the future will be a different path, it won’t look the same as everybody else’s, but we hope that she will find her own niche and her own success.
It became clear that Ashley needed other academic options and supports. She needed to be taught in a more specialized way, in a different kind of school.  A school that is suited to meet her needs; socially, emotionally and academically.  A school where she wouldn’t be the girl who stands out but where she could actually fit in.  A place where she would be comfortable in her own skin. I believe that as a parent you can do your child a great disservice by not accepting them for who they really are. Leaving our school district wasn’t what we wanted or hoped for at all.  When I look back on Ashley as a preschooler, in kindergarten and elementary school, that certainly was NOT the plan.  To be honest, it made me very, very sad to consider taking her out of our school district.  Yet, here we sit, a year later and I can tell you with absolute certainty that it was the right decision for her.
A very wise friend once told me “You can’t un-know what you know” and I knew that her needs we’re becoming more complex as she got older and she needed to work on various aspects of her disorder and have things taught to her in a certain way.  If we wanted her to have a chance at a decent future, we had to do it.  But I’m not going to lie, my dream was for her to be successful in public school, again that was MY dream and MY DREAM was not in her best interest.
So, a year ago we sat Ashley down and with very carefully chosen words we explained that she wouldn’t be going to the middle school.  She wouldn’t be entering 7th grade with her friends.  “We found a school that will be better for you.” She was a little sad and she had questions and I took lots of deep breathes and held back my tears with all of my might as we explained…“The school you will be going to is for kids just like you.  This school will be better for you, it’s smaller, quieter and will be a better place for you to learn.”  She looked at us with her big blue eyes and said, “But I won’t be with my friends anymore” and my reply was, “No, but we can still see your friends if you want AND at this school you will make new friends and your new friends will have autism, just like you.” Ashley knows she has autism, she understands that her brain has developed differently.  That is what we explained to her at a very young age and she understands.  She spent her last few years of upper elementary school constantly comparing herself to the neuro typical girls.  She wanted to be their friend of course, but didn’t have the social, emotional or conversational skillset.  She knew they were growing at a rate that her developmental delay couldn’t keep up with.  She was often sad and jealous and although she was never made to feel less by any of her peers, she did.  I know this because she would tell us many different times, in many different ways.  I think it must be like being the poor girl who is forced to live in Beverly Hills.  You know you don’t fit in and no matter how hard you try you know you never will.  And yes, she had friends that were nice to her, but those friends weren’t going to be there to teach her the life-skills she needs in the community or how to live like a functionally independent adult.
Friends are nice, but she is going to be 14 and this where we find the fork in the road.  It is here and you need to make a decision, and this is your child and the decision is on you.  Make the right choice mom and dad, don’t screw this up.  She needs every opportunity to succeed and you only have until she is 22…tick tock, tick tock…I only have one chance at being Ashley’s mom and the decisions Joe and I make as her parents are crucial to determining her path for the future.  Not only did pursuing and achieving her school placement come at a significant cost and sacrifice to our family, but it tore me apart in more ways than you can imagine.
Thank God for giving me the smarts to marry the man that I did, because when I would start to wonder and say, ”Well maybe we could do this?”  Joe would say, “Shiela, but we did that.”  And when I would say, “Maybe we could sign her up for that.”  He would say, “Remember when we signed her up for that other thing?” I would cry and question everything and he would hand me the tissues and review the answers with me… again and again, over and over.  We knew what we needed to do for her and we knew why.  I am still sad that her path is different.  I wish it didn’t have to be this way, but I am glad that she is where she is.  Sometimes the best decisions in life are the hardest ones and I’m learning that more everyday.

#Siblings

It’s been said that the “typically developing” siblings of autistic children are, in fact, the furthest thing from typical. I can say that is true in our family. Ashley’s brother Matthew is 3 & ½ years older than her and he is her biggest champion, a form of constant support and her most valiant protector. He has spent countless hours of his life in the car with me and Ashley going back and forth to speech therapy appointments, weekly social skills groups, and marathon doctor’s appointments. He and I would become weekly regulars at the local donut shop or in our favorite comfy chairs in the waiting room. He became involved in her home therapy sessions at a very young age playing games, acting out social scripts and watching Ashley as she struggled to learn some of the most basic social and academic skills that he mastered so quickly. He has been a witness to some of her most major meltdowns, offering a hug or sometimes some advice on how we could avoid it in the future. There have even been times when he has called me and Joe out for not holding her accountable for something he knows she can do! That’s my boy.
He is an old soul, he understands our family dynamic. He is sometimes held back from doing more because as a family we can’t, or as an older brother he needs to be there to watch his sister.
It has been said that typically developing siblings often feel lonely because they don’t have peers who have siblings with special needs. So they feel different when their friends ask “what’s wrong with your sister?” Some also feel self-conscious about their sibling and aren’t sure when or how to tell their friends about them. Some feel uncomfortable inviting friends over because they are unsure of how their friend or sibling will react. I think all of those things may have been true for Matthew at one time or another. If they were, he never said so but if I’m being honest…I saw some of it.
Matthew watched us struggle to make sure Ashley’s needs were met. I could see at a young age that he didn’t like making mistakes, trying to be the perfect kid at all times. We would talk about it with him and his teachers. We would explain that perfection is impossible and we didn’t want him to stress, but he is who he is, and I can see how things affected him.
The good news is that typical siblings often turn out to be more compassionate and caring individuals. These siblings have seen what it’s like to have a hard time in life and they take nothing for granted. They see the struggles and how hard their siblings have to work just to try and make sense of the world. This is all true for Matthew.
He is 17 now, Ashley is 13.  A few years ago I explained to Matthew why all of the therapies, social groups and appointments were important for Ashley. I remember saying, “Dad and I won’t live forever buddy and I need to know she will be ok.” His response was, “You don’t need to worry mom, I will always be there for her.”
He is perfect to me.❤

#Holland

I am often asked to describe the experience of raising a child with autism – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Welcome to Holland was written by Emily Perl

#Spectrum

You’ve probably heard people refer to autism as a spectrum disorder. Spectrum by definition is to classify something on a scale between two opposite points.  You may hear someone say, “He is on the high functioning end of the spectrum” or “she is lower functioning.”  There are also those with autism that might fall somewhere in between.  I think my Ashley may fall somewhere in between.

According to the National Institute of Health, Autism spectrum disorder (ASD) is the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability.  People with ASD often have these characteristics:

  • Ongoing social problems that include difficulty communicating and interacting with others
  • Repetitive behaviors as well as limited interests or activities
  • Symptoms that typically are recognized in the first two years of life
  • Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life
  • Some people are mildly impaired by their symptoms, while others are severely disabled.

Treatments and services have proven to improve a person’s symptoms and ability to function. So knowing this, you can imagine why parents of kids with autism jump through hoops trying to get whatever services we can.

People whose symptoms were previously diagnosed as Asperger’s syndrome or Autistic Disorder are now included as part of the category called Autism Spectrum Disorder (ASD).  Autism and autism spectrum disorder (ASD) are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.

So like snowflakes, if you look at people with autism collectively they appear to be the same but when you look at them individually, they can actually be very unique and different.  Some are more cognitively impaired, some are nonverbal, some exhibit self-stimulatory behaviors, some have tantrums or meltdowns, some have issues with self-regulation and impulse control.  They can be similar and different in many ways.  So what is true for one person with autism may not be true for all.

I remember one boy in Ashley’s preschool class who loved to spin.  He would stand in a room and spin his entire body over and over and over.  Ashley never did that, but she would have a complete behavioral meltdown if she couldn’t stand on the pink square at the start of her dance class.  Ashley could memorize and recite an entire episode of Dora the Explorer while some of her classmates were non-verbal.  So while they all fall under the same diagnostic umbrella of Autism Spectrum Disorder, they can truly be very different…just like the rest of us, but with the added diagnosis of autism.

The same, but different.  Different but not less.  Please try and remember that when you meet someone with autism. They are not all the same, they have different needs and abilities.

#FillingBuckets

Kids with autism may not be good at making friends, but it doesn’t mean they don’t want them.
Sometimes they need to be taught the basic skills of friendship like sharing or taking turns.  When Ashley was included in a typical 1st grade classroom, I asked the teacher if I could come in and read a book “Have You Filled Your Bucket Today”  The book is great, it encourages positive behavior by using the concept of an invisible bucket to show children how easy and rewarding it is to perform acts of kindness, appreciation, and love and how doing those things “fills buckets.” It also helps to explain that “bucket dipping” is a negative behavior and explains that it’s possible to fill or dip into our own buckets.
I wanted to read the book and talk to these first graders about Ashley and “explain her” a little bit. I remember the administration was a little apprehensive about what I was proposing  but my thought was that these kids can see her stimming at her desk everyday! (Stimming is short for self stimulatory behaviors like flapping hands, rocking, repeating words as a means of self regulation.) They also see her getting upset over things they don’t understand. Do you honestly think they don’t notice she is different?  What is wrong with me explaining her behavior to them?  I knew my audience, 1st graders. Keep the language basic and the message simple. The administration eventually agreed and an administrator sat in the classroom that day as I read the book and talked to the class. I chose to go in at a time when Ashley was out of the classroom working with a specialist in order to try and preserve her integrity with the other kids.
I read the book and we talked about kindness and things that made us feel good. I explained to her classmates all of the things that Ashley could do really well; rollerblading, iceskating, spelling and memorizing things. I asked them to tell me what they were good at and what was hard for them. One boy said that he was good at math but spelling was hard for him and one little girl said she was trying to learn to ice skate but it was really hard and she needed lessons. After listening to all of them I explained that even with all of the things Ashley was good at, making friends was something that was really hard for her.
I asked the class if they had seen her spinning her pencil and demonstrated what that stimulatory behavior looked like. They nodded yes. I asked them if they had seen her get upset over small things and again, they nodded yes. One girl volunteered that Ashley had thrown her pencil case that very morning because she couldnt find her purple eraser. Ugh…exactly.  They get it.
I took a deep breath and went on to explain that if being friends with Ashley made them uncomfortable that was ok.  I think kids have a right to choose who they want to be friends with, but I explained that I did expect that they would ALWAYS BE KIND and NEVER be mean to her. You don’t need to be friends but you should never dip into a bucket, only fill them!  We ended with some high fives and I thanked them for being good kids and asked them to promise me that they would work hard at filling each other’s buckets.
I think all of us could benefit from the same lesson.