A siblings story – Dale and Kelly

I have known Dale for a long time.  Many years ago I was a youth leader while he attended youth in our church.  Dale has always stood out wherever he goes … and yes Dale in a very good way.  This is a special story and I am grateful that Dale was willing to delve into this portion of his heart … his growing up years living with and eventually dealing with the passing of his older brother.  Grab a kleenex and read on.

LITSL:   Can you tell us a little bit about your brother?  What was his diagnosis?  What was his quality of life like?

DALE:  Kelly was born in 1975 (four years before me) and he was born as healthy as I was.  However, in 1975 there were mosquitos carrying around encephalitis which as google tells me is an acute inflammation of the brain.  At seven weeks old my brother was bitten by one of these mosquitos and it eventually turned into a severe case of cerebral palsy.  This left him with an inability to communicate, control over his arms or legs, and to be fed by a feeding tube.  Life was very difficult for him.

LITSL:  That sounds unbelievably tough.  When did you realize that Kelly had a disability?

DALE:  Since I was younger this was the world I grew up with and for many years this was what I thought was normative for all kids.  I can remember seeing my brother drool and intentionally trying to copy my big brother and drooling over myself.  The first time I noticed that my brother had different challenges was when a kid in kindergarten told me that my brother was “handicapped,” and I came to my mom distraught and asked her what that even meant.

LITSL:  Do you remember how you felt about this news about Kelly’s disability?

DALE:  I don’t recall the emotion of the moment but I know I didn’t like it.

LITSL:  How did you feel about Kelly and his disability growing up?  Did you feel isolation?  Loneliness?  Pride?  Sadness?  Confusion?

DALE:  This is probably one of the hardest questions for me to answer.  At times I felt very protective of him speaking out when I heard the word “retarded” being thrown out as a verb.  At times I felt embarrassed as I didn’t want to have a family that was different.  At times I was angry at him or at God  because I wanted normal.  I wanted to play hockey with my friends but with his health concerns that just was not possible.  I wanted a brother to play with and engage with, and most of all I wanted to be the younger sibling.  Too often I felt like the older child.

LITSL:  Thanks for your honesty.  Those honest emotions are not easy emotions to admit to.  Can you speak of the challenges and the wins in having a brother with a disability?

DALE:  The win is easy for me.  I learned at an early age that life is not always fair and there will be tough times.  That has been formational for me throughout the years.  I never felt that life owed me anything because quite frankly compared to him I had everything.

The challenge was that I could not do everything that everyone else could.  We could not do family vacations, I could not play hockey and even today I miss not being able to sit and be with my older brother.  I would love to have him be a part of my kids lives and be their uncle.

LITSL:  Your “win” …. I love it.  A journey to receive this gift you would likely never ask for but will be forever grateful for.  Tell us a bit about Kelly.  What did he love?  What did he not like?

DALE:  I don’t remember this as much anymore.  My biggest memories of him were that he loved to laugh as that was one of the ways he could communicate.  He was able to laugh at appropriate times.  I know if he was still around today that he would find my kids hilarious.

LITSL:  What a beautiful picture you have painted with Kelly and your boys.  I can picture it as well.  What did a typical day look like for Kelly?  What did a typical day look like for you?

DALE:  I really don’t remember this anymore.  He was a part of the school system which was good and quite frankly he spent a lot of time sitting and observing the world around him.

LITSL:  What was the biggest challenge you believe Kelly faced?

DALE:  Communication.  I often wonder what he would have said to us or how much he really knew what was going on.

LITSL:  What was the biggest challenge you faced as you supported Kelly?

DALE:  Guilt.  I never felt like I was doing enough or doing it with the right spirit.  If I could talk to a younger version of me I’d talk about self-empathy.

LITSL:  I cannot imagine losing a sibling at such a young age.  Can you tell us a little bit about that time in your life?

DALE:  It was just before my 19th birthday and at that point I was working at Friesen Yearbooks.  I was laying in bed and thinking about getting ready for work when I heard my mom yell.  This caused me to run up the stairs only to discover he was gone, as I hugged my mom in that moment it felt like a transition was happening from childhood to adulthood, and I was supporting her rather than her supporting me, and that shift was monumental.  From there I had to go find my dad and tell him that his first born son was gone.  At that time I had a 1998 red Chevy Cavalier that I loved and I was flying down gravel roads trying to find him and having the realization that in that moment I did not care about my car or the stone chips.
For a long time I pushed this part of my world into a deep spot inside of me, and over the years through counselling I’m trying to process, grieve and understand what it all meant.

LITSL:  Wow.  This is every families worst fear.  I cannot imagine how to even begin processing this all.  Looking back can you tell us some heroes you have encountered in Kelly’s life?

DALE:  My parents.  There was no map for their journey with my brother and I’m proud of how they navigated his life.

LITSL:  You are right – there is no “What to Expect while you are raising a special needs kiddo and adult” book.  No map.  What do you miss the most about Kelly?

DALE:  I would really just love to sit with him and hold his hand.

LITSL:  What are you most grateful for?

DALE:  As weird as it is to say is that I was grateful that he passed before my parents did as I know that would have been very difficult for them going forward.

Thank you very much for giving us a small glimpse into your growing up years.  I know a concern for parents of those with special needs is how are the typical learning kids doing?  So often they have to suck it up and go with the flow not wanting to create more waves for parents.  And there is guilt with that as well.  Are we doing enough for those children?

I love reading and listening to Jean Vanier a Canadian Catholic philosopher turned theologian, humanitarian and the founder of L’Arche communities.  He says so many words that are life changing but the following statement empowers me daily in why I do what I do.  “Those we most often exclude from the normal life of society, people with disabilities, have profound lessons to teach us.”  Dale I speak these words cautiously, not truly knowing the road you have traveled.  We will never know why suffering happens, why it cannot magically get prayed away.  But we do know that there is worth in everybody, that everyone is deserving of love and attention.  That we do learn when we are immersed in “special needs”  life.

 

 

 

 

 

 

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Loving and supporting Noah throughout his needs

I cannot impress upon you enough how fortunate I feel to have fellow families tell their stories.  To be vulnerable enough to share the deepest wounds and joys that come with raising a special needs child is something that is not easy.  These stories are a gift.  A gift of education.  When we know – we cannot un-know.  Read on about Noah and Anne.

LITSP:  Can you tell us a little bit about you and the person with a disability that you support?

Anne:  My name is Anne, and my youngest child, Noah, is twenty-three years of age. Noah lived at home until just over a year ago, when he moved to his own house. Noah is the youngest of our three children, and he was diagnosed with autism when he was three and a half years old.  His diagnosis was revised as an adult and now includes Intellectual Disorder and seizure disorder. Noah is verbal, but not terribly conversational.

LITSP:   When did you discover that Noah was living or going to live with atypical challenges?

Anne:  Noah’s autism was diagnosed with autism after he had a grand mal seizure and was taken to our local hospital, but we were already on a waiting list to see a developmental pediatrician. I suspected something was up with Noah when he turned three, but it took some time to get an actual diagnosis. Back then, there was not a lot of information about autism in the medical community, and the pediatrician who diagnosed him did not even suggest any course of treatment. In 1998, there were only three articles about autism on the internet, so I did my research at the local library and bookstores, and I read as much about autism as I could.

LITSP:   What was your response to this news?  How did you feel?  What did you do?

Anne:  Initially I thought that Noah was only mildly affected, and that he would eventually catch up to his peers developmentally, more or less. I did not know much about autism, and I certainly did not realize that Noah had an intellectual disability as well. When Noah was three years-old, I could not fathom what his life was going to look like twenty years later. The impact his disability would have on his life was revealed slowly over time. Early on, the milestones that were not met were small, but as he grew, the gap between Noah and his typical peers began to widen. It was then that the realization of how different his life would be set in. As he grew, his difficulties became more apparent, and we realised that he would need a great deal of support to live as an adult.

LITSP:   What was your physical response to the diagnosis?  Did you let things fall as they may or did you work towards a goal?

Anne:  We tried some different things when Noah was first diagnosed: sensory integration, auditory training, a gluten-casein-free diet, and play therapy. Eventually, however, we decided to do an Applied Behaviour Analysis (ABA) program. We began a home-based ABA program in our home. Our school system was not really prepared to teach academics and functional skills to Noah, so we trained at home all of the people who were hired to be his educational assistants at school. They continued to run his ABA program at school; this program ran, at home and at school, for fifteen years.

LITSP:   How did this work for you?  What were the challenges?  What were the wins?

Anne:  ABA was definitely the best way to teach new skills to Noah, but we experienced lots of push back from the school system. Although the official policy in the school division where we live is that of “inclusion”, we found that Noah was expected to participate in school life even when he could not cope with it. The onus was always on him to make the accommodations, even though he was the one with the disability. We also found that teachers did not like to take advice from non-teachers, so we struggled to get them on-board with working with the Behavioural Analyst who ran our ABA program and with following through with that program. Some teachers went so far as to refuse to have Noah in their classroom, because they did not “agree” with ABA. Despite issues with the school, Noah was able to learn — a lot. In his first year of high school, he was the least verbal student in his classroom, but he surprised his teacher by being at the top of the class in terms of demonstrable academic skills.

LITSP:   Tell us a bit about Noah.  What does he love?  What does he not like?

Anne:  Noah is adorable (said his mom). He is usually quite happy, easily compliant, and easy-going, and he can be very silly and funny. He is an excellent swimmer, he also loves bowling, being outdoors, and seeing animals. He especially enjoys birds, small dogs, cats, and ferrets. Noah loves family gatherings, and getting together to go out for Chinese food. He likes quieter places; he is not a fan of crowds. Currently, in his day program, Noah does some paper shredding and cleaning at the office of the agency that supports him. He is well liked there, and it is evident that he feels that he is part of that community.

LITSP:  Well I agree …. Noah is adorable!  What does a typical day look like for Noah?  What does a typical day look like for his supporters?

Anne:  Noah lives on the main floor of a shift-staffed house, which is just outside of the city with a big yard. During the week, he attends an individualized day program, where he has an ABA-type program that runs all day. He does some office work and cleaning, some academics, and some leisure activities. When he is at home, he goes for walks, throws the basketball in his back yard, plays video games, watches TV, does chores, or listens to music.

LITSP:  What is the biggest challenge you believe Noah faces?

Anne:  Although most of the time, Noah is an easy-going guy, he has a lot of trouble with emotional regulation. The once-occasional meltdowns he had as a child increased in frequency and intensity by the time he reached puberty. What had been inconvenient and annoying tantrums became over-the-top aggression, that often left us with injuries and damage to property, including holes in the walls of our house. This aggression was, by far, the most difficult aspect of Noah’s disability. It impacted our life in a big way. We sought help for Noah; we tried medication, and we stuck to a solid behaviour plan, but despite our best efforts he continued to have these meltdowns.

Managing Noah’s outbursts was a constant theme in our house, and over time it curtailed our activities with him. When Noah became aggressive in public, we had to restrain him so that he did not hurt himself or damage property (of note is that he rarely, and only incidentally, hurt someone he did not know), and that was embarrassing and distressing for everyone on the scene. Noah’s sheer size (6’5”, 300 lbs) and strength meant that he needed more than one person with him at all time. During the last five years that Noah lived at home, we tried to tailor our lives so that at least two of us could be with him when he was out of school. Simply stated, it was a difficult time. In his residential placement, Noah is staffed at a ratio of 4:1 – literally four large, full-time paid men with him at all times – which is very uncommon, but it is what Noah needs for him, and others, to be safe.

LITSP:  What is the biggest challenge you face as you support Noah?

Anne:  When Noah first started having meltdowns at school, I would get a call to come and pick him up and take him home, and he would be allowed to return to school only the following day. While I was sympathetic to the school not wanting a disruptive student in their midst, having Noah sent home did nothing to change his behaviour. I had to struggle to keep Noah occupied for the balance of his day, and I had to take time off of work; in effect, I was being punished by the school, not him. Noah relied on the structure and routine of his day at school, and disrupting that made him very anxious. Ironically, Noah’s anxiety about the possibility of being sent home led to his melting down more frequently. Navigating this issue with the school took years, and more meetings than one would imagine possible. Eventually, but only in the last two years of high school, Noah was allowed to de-escalate at school and to remain there to continue on with his day.

When Noah entered the adult disability system at the age of 21, I learned that it is not that uncommon for individuals with autism to have challenging behaviours with which families cannot deal on their own. Unfortunately, there are limited resources out there for someone with his needs. We knew that emergency foster care was possible (although it was never raised with us by his Family Services worker as an option): while parents should not have to terminate their parental rights to get help, many end up doing just that because the strain and expense of tending to the needs of a young adult with a disability is too great. We kept Noah at home, but it was not without personal costs, both emotionally and financially. If I had to do it all over again, I imagine that I would be more insistent when I asked for help. This thought especially hits home having seen Noah move out and having had his needs assessed: that he is now resourced with four full-time staff throughout the day puts the last decade of our lives into perspective.

When he turned 22 years of age, after an almost-four-year-long wait, Noah was finally able to move into a shift-staffed house. We partnered with an agency that had strong clinical supports, and which specialized in working with people who had challenging behaviours. Noah has been happy in his new home, and living with a good behavioural plan to manage his escalations has made his life better. His house has been set up just for him. He lives ten minutes away from our home, in which he grew up, and we see him several times a week. I talk to him daily on his iPad. We continue to have regular input into his care.

While I cannot imagine a better setting and situation for him right now, it has been a hard, uncertain, indirect road to get here. I feel relief from the stress of managing his meltdowns; on the other hand, there is perennial grief that he no longer lives with us. The change has been, and still is, hard.

LITSP:  What does the future look like for Noah?  What are his hopes and dreams?  What do you hope and dream for them?

Anne:  We want Noah to be happy, so all our planning for his future has been geared toward that outcome. We see him living a good life, and doing things he likes to do.

LITSP:  Who are some heroes you have encountered in Noah’s life?  Who would you give a shout out too?

Anne:  It is impossible to single out any one person as a hero, as we have been fortunate in terms of partnering with some excellent people. In running an ABA program, we gained a team of people, some whom came into our lives briefly, and others who came and stayed. One of Noah’s EAs worked with Noah at school for 11 years, and still visits Noah at his home. Another former ABA tutor went on a road trip with us last spring, along with her five-year-old daughter, and we attended yet another former tutor’s wedding. These people were hired to work with Noah, but we grew to love each other like family.

Noah has two older siblings, who have been a part of this journey for most of their lives (and all of his).  Both have become remarkable young adults, training and working in professions in which they help others, and each having worked closely with other individuals with special needs. I could not be more proud of them.

My parents have always been a part of Noah’s life, and sleepovers at their house have given way to their visits for supper at his house.

For the purpose of this blog, I give a shout out to my Autism Mom friends. It is important to find a tribe so you have a place to vent, or cry, or celebrate. My Autism Mom friends are brave, hilarious, and loving.

LITSP:  What do you fear the most?

Anne:  I think that we all have fears about our children, even our neurotypical children. While Noah is quite vulnerable in some ways, I try not to let my fears about the future take over my thinking. My husband regularly reminds me that to worry about something will not make it less likely to happen.

LITSP:  What are you most grateful for?

Anne:  Besides family, I am grateful for the team of people working with us and advocating for Noah as a young adult.

LITSP:  What do you wish everyone who does not support a loved one with a disability knew?  What message would you love to give?

Anne:  People have said that we are “amazing parents”, or impress on us that they “could never be like you guys”. I wish they wouldn’t say that. We did not choose this path; we learned to be parents, and to cope with sleepless nights like any other parent, and to have hopes and dreams for our children. Having a child with a disability does not ennoble us. If we inspire you, great, but you do not need to share that with us. I appreciate that the intention in sharing that sentiment is genuine, but sometimes this declaration of admiration feels like others are being thankful that they do not have our lot in life. I would suggest instead, if you know that a parent of a child with a disability is having a tough time, that you could listen and be sympathetic, or you could even offer to help in a practical way (like making a supper, or helping with something like their yard work). My friends supported me by including me in their social gatherings, even though having a kid with autism meant I sometimes arrived late or left early (or both), or did not attend at all. They kept inviting me anyway, and that felt like I was being included. When my life was hard, my friends did not forget me. When I was not the best friend to them, they still reached out to me. So, show up for your friends who have kids with disabilities and, I promise you, that will mean a lot more to them than telling them that they are heroes.

LITSP:  In your opinion what needs to change in society to give our kids with a disability a better life?

Anne:  If we want to make sure that people with disabilities live good lives, we need to invest in the people who support them. As of right now, people who work in the supported living field earn slightly above minimum wage. This is poor remuneration for folks who often do the same work that healthcare workers do: administering medication, advocating healthy food choices, and making sure the individual being supported is safe. Lots of people love this kind of work, but eventually leave for better paying healthcare jobs because they cannot afford to support their own families on such low wages. High staff turnover is hard on people with disabilities,  and agencies often struggle to keep all their positions filled. Better wages would fix this issue.

LITSP:  What do you think is working that makes a better life for our kids with a disability?

Anne:  We have come a long way as a society in how we view disability. We no longer automatically institutionalize people who have disabilities, and we are moving towards a more inclusive society. However, there is still work to be done. There are still many public places that are not accessible for folks with physical disabilities, and while we all agree that people with intellectual disabilities belong in the community, parents face decade long wait lists for their children to move into their own homes. It is important to look at disability through a long lens, and recognize positive changes, but we also need to stay present and keep advocating. We do not have the luxury of selfishness and cynicism, because our loved ones need us to use our privilege to make their lives better. I think we are moving in the right direction, but we have to keep up that momentum.

LITSP:  Is there anything else you would like to add?

Anne:  Hahaha… this is already so long…. So, nope.

Thank you so very much Anne for sharing your story with all of us.

I was in the pool!

When you have a child with special needs a huge component/worry for that child’s life is their social life.  It goes deeper than “Will my child get invited to the birthday party?”  Because without lots of work and the grace and kindness of others the answer is likely “No”.  It means that, at least for us, all relationships for her require work on my part.  Inclusion for her has always been a high goal for me.  Seeing opportunities for her to fit in and working towards that is ongoing, bull-dozing and tiring.

And it has paid off.  We have great people in her life.  People that “get her”, invite her, talk to her, tease her and love her.  They know that when she sees them and hugs herself that is meant for them.  They realize Hannah is not scary and autism is not scary but rather there is a person deep in the waters of autism.  That she is worthy of time, attention and love.

A few weeks back one of my wonderful respite workers had Hannah at a house concert.  Hannah loves music however lots of people noises  in a small space are extremely difficult for her.  But the love of music can overpower the people noise.  My worker was texting me a little bit throughout the evening and was concerned that the people noise were getting to her.  I suggested to ask Hannah and that while her vocabulary is not great or reliable she will tell you if she needs to go home.  The text back was “She wants to stay”.  She came home quite late that night.

I thought back to the early years of her life.  When being at another home with only a little bit of people noise sent her falling to the ground in a body full of sweat, crying and pleading “time to go home time to go home”.  While she could not call me “mom” she could say sentences that worked for her survival.  How far she has come.  I never knew the constant work we did would pay off like this.  At age 21 she really has matured another step.  It would have been nice to have a “What To Expect When You’re Raising A Special Needs Kiddo”.  But I have not heard of any book in the making ….

It seemed like only a short while ago when I would close my eyes and try to find peace in my life as a perma-caregiver that I would constantly visual the following:  Me in the deep end of a pool barely treading water but doing it.  But then someone would do a fancy cannonball and create large waves thus making me go underwater gasping for air and trying to get to the surface.  That’s how it felt.  Barely making it, but making it until the next ‘thing’ would hit us.

I touch wood as I say this.  It does not feel that way anymore but rather I would like to visualize me in the pool with a pink floatie and a drinkie poo in my hand with some beautiful music.  Now THAT’S the pool I would like to be in.  And with no cannon-ballers.

It is well

As a “perma-caregiver” keeping emotionally healthy is top of my list.  Finding a balance in life that includes Hannah’s complete well-being and my own well being is a juggling act that I have yet to see a how to book on or at least a social media meme.  During the years of medical inconsistencies and autism unpredictably my emotional wellness was not only not on the top of my list but far from any pen that would write a list.

Things have changed.  I didn’t know that they would.  Being a little tiny bit of a “Drama Queen” I regularly felt that “this is it”.  That it would always be so difficult.  But we worked onward anyway.  We worked through autism difficulties, advocated for services, took her to appointments, nursed her back to health again and again celebrating every tiny bit of wellness and joy we saw from her.

I recently had two separate appointments to assist in the healing  some of the trauma of Hannah’s growing up years.  I had realized that I was a little hair triggered when thinking about the intensity of care giving for her had been.  The appointments were from two separate people using a guided meditation technique.  (See end of blog for information).  During both of these visits I could visuals one thing.  (Insert breath).  That she is okay.  That it is okay.  That I am okay.  Such a beautiful gift to be able to partake in this with such wonderful and trusting practitioners.

I wish that at age thirty I had (nearly) fifty year old me by my side.  I wish that (nearly) fifty year old me could say to thirty year old me that it will be okay and to do what you know is right.  I see thirty year old me at night on the white wicker rocking chair with its hunter green with dusty rose flowers (hey it was the late 1990’s) holding Hannah in the middle of the night, grief and worry stricken.  I wish (nearly) fifty year old me could say to thirty year old me to grieve.  Grieve that the typical life you yearned for Hannah was not the life for her and it was not the life for you.  And that it was okay.  That you will be stronger because of it and you will have insurmountable joys because of her life.  And to know that she will be okay beyond you and she will always have love.

I did not know that Hannah would mature the way she has.  I know it is the result of her ABA program and educational years.  They were so difficult and sometimes it seemed like no progress was being made. I did not know that despite her disability that there would be a form of maturation.  Of rising above being a child while staying a child in so many ways.  I want to say anyone in the early or middle stages to keep going.  Your. work. will. matter.  

We now see Hannah (age appropriately) super annoyed with us as parents over trite issues and laughing it up with her respite workers.  We see her wanting to stay up late – usually later than us.  We see her yearn to be out and about.  Her social life is so rich thanks to a city of people.  We see  her having crushes – celebrity and real life.  We see tiny bits of independence with self help skills and abilities in general.

If only thirty year old me would have had a crystal ball to give a moment of respite for the heart ….  But that’s not how it works.  We will go onward and imagine what seventy year old me would come back to say.

(Guided meditation information in the Southern Manitoba area:
Chantelle Neufeld:  https://www.facebook.com/mindfulregeneration

Tamara Franz:  e-mail –  leavingemeraldcity@yahoo.ca

 

 

The fight never ends: Donna and Brandon’s story

This is a very exciting post for “Life in the ‘special’ lane” (Litsl).  A first post written by a fellow caregiving parent (not including Hannah’s dad – which another one is to come, I tell him).  I am so pleased to introduce my friend Donna.  Anyone with a child with a developmental disability – autism or other – will hear and understand her story.  Her story could be my story or your story, from the reaction of her husband to the fight instinct that you will in the parents of a child with a developmental disability.

I am so grateful to Donna for sharing her story.  Please read and share with anyone you feel could benefit from either the information shared here or to help someone not feel alone.

Litsl:  Can you tell us a little bit about you and the person with a disability that you support?

Donna:  My husband and I have been married for 27 years – had kids young – 2 boys – 26 & almost 25.  I grew up all over MB and my husband grew up in St. Adolphe.  Both graduated from Niverville Collegiate.  Our older son is a high school math teacher and football Coach – just moved into his own home.  Our son Brandon, who has high functioning autism, will be turning 25 this September.

Litsl:  When did you discover that Brandon was living or going to live with atypical challenges?

Donna:  I knew from early on something was “different”.  No eye contact – non-verbal until 3-4.  Tantrums for 12 hours a day.  Sensory to noise and textures.  Would only eat certain items (would starve himself if he couldn’t have the items) so we couldn’t just let him eat when he was hungry.  Doctor I had did not believe it (he had 5 kids) and did not take my observations seriously.  I was only 22 and just was a “new” mom.  Just hang in there I was told – he would grow out of it.

Litsl:   What was your response to this news?  How did you feel?  What did you do?

Donna:  I had a different reaction than my husband.  He was upset and had grief.  I was actually relieved – as a mom it wasn’t me doing something wrong.  I am the kind of person that give me information and I run with it.  As soon as I found out I started researching EVERYTHING.  The news does change as they grow – sometimes grief does happen on milestones that don’t happen like all the “normal” kids.

Litsl:   What was your physical response to the diagnosis?  Did you let things fall as they may or did you work towards a goal?

Donna:  I was a crazy person trying to figure out how to help.  I did suffer from depression from an early age so that was hard to manage during all the chaos.  I wanted him to get the best he could get – I was all autism all the time.  That would change as he got older.

Litsl:  How did this work for you?  What were the challenges?  What were the wins?

Donna:  It does and it doesn’t.  I would ask for things in the beginning of the process – whether it was medical or school related but then realized that I had to FIGHT for everything.  I became a person I didn’t recognize.  I walked into rooms ready to fight because you end up having to.  I don’t like that person or that process.  I will fight to the death for my baby.

Litsl:  Tell us a bit about Brandon.  What does he love?  What does he not like?

Donna:  Brandon is amazing.  He struggles with some things but here are the things he is good with:  Animals, movies, video games, dinosaurs, routine.  He does not like: people arguing, noises, frustration, smells, certain clothing…

Litsl:  What does a typical day look like for Brandon?  What does a typical day look like for his supporters?

Donna:  Brandon has a regular schedule: Sunday off, Monday off – Turning Leaf worker comes: sometimes bus training, groceries, mall, Tues, Thurs, Fri – Options Day Program, Wed & Sat work at Barks n Bubbles all day. He lives independently so the rest of his time is either alone or with family.

Litsl:  What is the biggest challenge you believe Brandon faces? 

Donna:  He still needs assistance – bus, decisions…he will always need people to help him.

Litsl:  What is the biggest challenge you face as you support Brandon?

Donna:  Fear – of everything

Litsl:  What does the future look like for your loved one with a disability?  What are his hopes and dreams?  What do you hope and dream for him?

Donna:  He just needs to be happy on a day to day basis.  He loves to travel.  I would love for him to find a group of friends (safe) that are not based on people we pay.  I just want him to be safe and happy.

Litsl:   Who are some heroes you have encountered in your Brandon’s life?  Who would you give a shout out too?

Donna:  There are many: Friends are absolutely amazing for us.  Family have stepped up and many are willing to assist when we ask. My husband and my older son are my heroes in Brandon’s life.

Litsl:  What do you fear the most?

Donna:  Vulnerability – don’t even want to think about it.

Litsl:  What are you most grateful for?

Donna:  Brandon has given us more than I can express.  He is a kind, gentle soul that many should look at and become.

Litsl:  What do you wish everyone who does not support a loved one with a disability knew?  What message would you love to give? 

Donna:  It’s hard. Period.  It’s Life Long.  Realizing it’s like have a baby or toddler for the rest of your life, how would your life be different when you can’t be spontaneous – ever.

Litsl:  In your opinion what needs to change in society to give our kids with a disability a better life?

Donna:  Access to everything – busing – acceptance – non bullying – friends

Litsl:  What do you think is working that makes a better life for our kids with a disability?

Donna:  Knowledge – even if you hate Autism Awareness day or Autism Speaks or Autism Canada – they are providing education to those outside our group. They might not be perfect but Anything helps!!!

Litsl:  Is there anything else you would like to add?

Donna:  You are awesome xo

Donna – you are an amazing mom.  I look to you as someone who has created a good life for you and for Brandon and I know that has not come without blood, sweat and tears.  What you have created gives me hope for our future.  Thanks for your story!  – Ang

Motorcycle

People with autism often have extreme sensory issues.  Noise, touch, taste, sights etc. can all emit an extreme reaction.  Along with the sensory issues Hannah has had she also dealt with extreme anxiety in her earlier years.  Anxiety that would be debilitating meaning that it would cause an inability to function.  There is a difference between simply “not liking something” to having extreme irrational anxiety over that sound or object.  Temple Grandin explains irrational anxiety like this.  Imagine you are sitting in an large auditorium when suddenly the lights go out.  It is pitch black.  The speaker then announces that a box of snakes will be tossed into the auditorium.  Now deal with it.  That is how it feels (for her) to have irrational extreme anxiety.  This illustration helped me understand it better for Hannah.  And I can’t love Temple Grandin more.

When Hannah was very young it became evident that she has a lot of sensory issues paired with irrational anxiety.  Many things caused sweating, extreme fight/flight reactions.  One of them was the sight and the sound of a motorcycle.  While we understand that motorcycles are loud most people can endure the noise and carry on with their walk, dinner outside or whatever else they were doing.  The sight or sound of a motorcycle would cause Hannah to shut right down and proceed in a panic attack.  We would see our young girl wet with sweat, on the sidewalk panicking and saying “It’s time to go home it’s time to go home”.  No encouraging or anything could get her out of this mode.  Needless to say when you see your child crumpled in a ball on the ground in a panic attack from a simple summer noise it breaks your heart.

Hannah dealt with irrational anxiety in her younger years however somehow outgrew it (or the work we did pushing her limits helped) by the time puberty came around.  We don’t understand it but man are we grateful.  While the extreme anxiety is gone she still has lasting memories of things that caused extreme reactions and now simply just prefers not to see or deal with them.  It is more manageable and not debilitating at all.

In the last post I wrote about her fear and eventual involvement in a parade.  This month we enjoyed another success.  One that we thought would never happen and yes you can likely guess …. motorcycles.

There is a man who lives close to us and he has a motorcycle.  A spider can am which has three wheels, is not too loud and has a cozy seat in the back for a passenger.  Byron approached this neighbor, explained about Hannah’s situation and asked if he may use it to take Hannah for a ride sometime.   The neighbor was exceedingly kind and offered the bike for the weekend as they were going to be gone.  This weekend was the weekend.

We started off telling Hannah that we were going to just go and look at a motorcycle.  The last few months Hannah has been very adamant around bedtime that she was NOT going to bed, but rather would be staying up (late) with us.  However the night that we were going to look at the motorcycle she suddenly decided tonight would be an early bedtime and outlined to us what she would be doing to get ready for bed.  Kind of coincidental … In other words the years ago tactics of fight/flight were replaced with a verbal escape plan.

We walked over to the neighbors and Hannah kept her distance from the motorcycle.  But she did not freak out or cause any disruption only made her preferences known that she needed to go to bed.  Nothing too serious.  She stood a distance as Byron started the motorcycle and we only showed her the helmet.  That was enough for one day.

Over the weekend with the motorcycle in our garage Hannah could see it from time to time desensitizing the strong emotions she had for the motorcycle.  Come Sunday evening the time had come for the ride.  Focusing in on the final destination of the motorcycle ride (an ice cream treat) the tight helmet on her head, the starting of the cycle and the ride itself was no issue at all.  We never would have dreamed that this was possible.

The next morning Hannah talked big about her ride and especially about the banana ice cream she enjoyed (banana split shared three ways).  Is she excited about another ride?  That may be pushing however we are extremely pleased that she could work through this.

We counted all the fears and irrational anxiety provoking things she has overcome since she was young and came up with this list:  Doilies, patio umbrellas, men with caps, dogs and their bark, patterns in the rug, sporting events with loud cheering, parades and now motorcycles.  The only thing left is loud children.   And I think we will give her a pass on this one … for now.

Parade

This past weekend we enjoyed our local small town festival.  The sunflower festival had our town overflowing with visitors, food, music, entertainment, sunshine and knackzot for the weekend.   Normally the streets of Altona are pretty much traffic-ridden free however on weekends like this we all search for parking,  watch for cars as we walk and practice our patience as what normally takes “five minutes” to drive  somewhere takes more like seven minutes.  Small town problems.

Growing up in Altona we, as most parents, were excited to have our children enjoy the festivities as we did when we were young.  A big part of the festival is the Saturday morning parade.  Emily, our eldest typical learning daughter, like most children enjoyed the parade while catching and eating the candy and other treats being tossed into the crowds.

When Hannah was born with all her health and development difficulties we tried with all our might to immerse her in typical life.  Exposing her to as much as we could while adopting the philosophy “know her limits and push her just above”.  While her autism was only diagnosed late at age six we knew there were significant development irregularities that were not understandable to us however we chose to assume that she could do anything we put our minds to.

While regular everyday activities like responding to her name, walking in public, playing in a way that was not weird, and talking were alien to her we never assumed we were in for big problems as we approached the Saturday morning sunflower festival parade.  We happily and naively brought Hannah to the parades expecting her (I kept forgetting that nothing was easy for this girl) to enjoy the parade.  After all, kids. like. parades.  Not so.  Hannah would immediately show signs of being terrorized, with her face becoming red, her whole body sweating.  She would clamor out of her stroller and while she could not appropriately converse with us knew the phrase to save herself.  “Time to go home time to go home time to go home”.  Crying, freaking out, and definitely not loving the parade we were perplexed at this unusual reaction.  Eventually we gave in, knowing that the limits were pushed high enough.  Letting her sit in the vehicle she would be safe from the noises and the sensory overload.  It hurt to not only not have my daughter enjoy an outing with us but to see her so terribly afraid.  People trying to be helpful would say unhelpful things to us like “I don’t really like parades either”.  Fun fact …. don’t.  Experiencing this odd reaction and knowing that it was not understandable to anyone  made me feel even more isolated.

But every year we tried.  Every year she was able to stay sitting with us and not in the vehicle a little longer.  Eventually as the years went on we were able to only verbally warn her when the firetrucks, ambulance and other loud vehicles were coming and merely suggest she “cover her ears”.  Eventually we took her to the parade without a single thought on her reaction.  I beamed with pride as I saw her sit and watch a parade.

This summer Hannah’s head coach of the Special Olympics informed us that there was to be a Special O float and that all athletes were invited to be on the float.  Immediately I said “Hannah will be there!”  When I told Hannah about this opportunity she shook her head and said “I’m not gonna do it”.  Inside I laughed asking myself “Has she even met me?”

Hannah stuck with her opinion of “not going to do it” until the night before when I told her who would all be on the float – one of them being a long lasting crush.  Suddenly the parade sounded good and she was excited!  Thank goodness for Eli.

Being old and tired when I brought her to the float the years of parade hell were lost on me as I felt I was just dropping her off.  The fact that we had worked really, really hard on this fell to the ground and it felt like I was just doing a task.

We watched the parade this year without Hannah.  Not because she was in the vehicle terrorized but because she was participating in the parade.  When the Special O float came by we cheered and waved!  Hannah covered her face with her hair as her Special O friends on either side of her encouraged her to look and wave at us.  It was a beautiful few fleeting moments.

Once again I am reminded to continue pushing Hannah just as we all need to be pushed in different avenues of our life.  Sometimes in the special needs world there can be a ‘reverse discrimination’ meaning that because somebody has a disability that we don’t ask anything of them.  We are so glad that while it was difficult, that we persevered for her and that we helped her achieve this win!