The “touch”

I am enjoying being a part of a book club in our church.  We are studying the book “Inspire” by Rachel Held Evans.  I have been inspired to think about the stories of the bible beyond being only literal and what deeper meaning they may have for us.  The latest chapter we discussed Jesus touching those who were deemed untouchable due to social status or disease.  These people were not to be touched yet Jesus touched and healed.  What do these stories mean to me?

Like a one trick pony I immediately go to my role as a special needs caregiver.  While I am not fraught with disease or poor social status I am a mom to a daughter who generally does not touch as touches “hurt”.  Hannah typically cannot hold my hand, hug, kiss, let me give her a back rub or put my arm around her.  Daggers from her eyes and a quick shuffle away from us will quickly and predictably happen.  For years I backed away from many and most hugs from most others … building a wall around me.  “Hugs don’t mean love between Hannah and I therefore I don’t hug”.  The wall protected me from the pain the lack of love that hugs and other snuggles brought.  Good coping?  Probably not but it was the best I had.

There are times every once in awhile that she will allow physical contact.  During music is one.  She will from time to time lean against us or put her head on our shoulder.  Other times she will randomly touch my cheek.  These times are magnificent.  Oozing with special-ness.  (We’ll not talk about the time she touched me on the forehead only to have her finger slip into my eye and cause a painful cornea scratch.)

I resonated in my own way with the stories of Jesus touching the untouchable.  To have a loving touch from a child when touching typically is impossible is special.  As the author encouraged out of the box thinking I went on to think.  What else besides a loving and healing touch could these stories be about?  How about taking the time to listen to someone – really listen when they talk?  Eye contact.  A meal to a family during a difficult time.  An e-mail to someone who is in pain offering yourself without advice or judgement.  So many things we can do for those in need that are not extravagant in nature.  That’s what I took from her lesson.

(I ask that you read this paragraph with a softened heart and free of judgement.  As woman (in particular) this is such a difficult issue to broach).  As a 50 year old woman I have been going through a mid-life – not crisis but more like questions.  What have I accomplished in life?  I have never worked full time since I have had children as Hannah’s needs have been so great.  Could I have done things better?  Should I have tried harder to find reliable respite and gone further with a career?  Does it make sense to be primarily a care-giver and not contribute more to the working world?  Always doubting yet knowing I have done for Hannah what I have thought best.  But something nagging in me was saying that I needed a ‘gold star’ from someone.  Some assurance that my contributions to society have been valid.

We had the opportunity to host some people for dinner this week.  Some of the people invited to the table were woman who were successful in their career.  What would I say to them?  A caregiver – me?  Devoting my life to one person that needs me.   A tiny bit of anxiety crept in me but somehow I knew that this dinner was going to be fabulous.  As the group sat around the table sharing stories about their lives we shared a little bit about Hannah.  Now when we share about Hannah the conversation changes.  There really are not any stories of relevance that other’s can share – no “tossing the ball of conversation”  (unless I’m with my autism mom’s group) and people usually just take in the information we share about our life silently and end up looking like stunned bananas.

I spoke about Hannah and her life and most of all her accomplishments that we have worked with her to succeed. The ups and the downs and the ways we have coped.  Never knowing if I have said too much or caused people to be uncomfortable I stopped talking giving the dinner table group a break from our “gong show” life.

The woman beside me was silent and she looked at me with a kind and serious face.  “I commend you” she said.  She took the time to listen to our story and to learn a little bit about autism and special needs life.  She took the time to offer  kind, encouraging and most of all supportive words.  For some reason this sentence from this stranger was exactly what I needed.  A validation from “the other side”.

The debate goes on in the special needs world.  I wouldn’t change my child or take the disability away from him/her or I cannot stand to see my child suffer or whatever it may be.  Debating about things we have no control over.  While I do not like to see Hannah suffer throughout her disability and I would take that from her … I would have a very difficult time taking away the depth of lessons we have received from being special needs parents.  That taking the time to talk to someone who may seem “untouchable” without fear, noticing those who are not included, being kick ass social justice advocates beyond the special needs world (to name a few).

We are here to love.  And love must be an action word.

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Stares

We went out of town for dinner last night. Hannah was fashionable with her hair brushed and curled. (Not that it matters just saying). I took her to the washroom and there were a number of people in the booth that stared.

This was not just a look a little too long glance. It was mouths open staring. First the guy then his partner. I sighed inside and waited for the stares to stop but then I saw someone from another booth starting to stare.

So I took out of my pocket my only defense for her. I STARE BACK AT THEM with my eyebrows raised. Usually that works. Not this time.

I walked more in front of her blocking her from their view thus ending their evening ‘entertainment’. Lots of angry words puddled in my mind.

Here’s the thing people. Stop staring. It’s rude and hurtful.

Not the blog post I was going to write

 

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Things were going great.  Hannah’s chores were piling up at home due to her rich social life.  A social life that incorporates support and people that care.  But that initial work had been done and (dare I say it?) a little bit of coasting was happening.  I was about to write a blog post about the joys of parenting an adult special needs adult and more of the beauty I had encountered that other’s don’t get to see.  I was proud.

Then … all hell broke loose.

Maybe a tad dramatic but have you met me?

We decided to take a last minute holiday to Orlando Florida to get a break from the cold Southern Manitoba winter.  We would bring Hannah to some of the Disney parks and enjoy lazing around with her.  We had brought her to the Disney parks before and it was nothing short of terror for her.  The mass amounts of people, the large characters, the noise, everything sent her sweating, flailing to the ground and unable to cope.  But we knew she had accomplished so much that last years and we knew she would be able to cope and maybe enjoy some of the parks and characters (know she loves some of the Disney characters and rides).

I will just say right here that at this point in my life travelling is not something I enjoy.  Prepping for either leaving Hannah or taking her along is a lot of work …. and it would have to be a really fabulous trip to balance out the workload out.  And this was borderline.  But a break from winter sounded decent enough.

So we made quick plans and got ready to leave.  A few days before the trip Hannah came home from work sad and not wanting her snack.  Instead of the duplo blocks times Hannah chose to “rest” on the couch and even shed tears at night.  Hannah never misses her snack, Hannah never misses block time, Hannah never asks to rest on the couch and Hannah rarely cries.  Because Hannah is functionally non-verbal it sent Detective Mom into high gear.  Was she sick?  Did something happen at work?  Is she depressed?  Is she tired of her normal snack?  Is she tired of duplo?  Because the ‘symptoms’ were not grand in nature we kept her regular schedule going.  And she showed some excitement about seeing Mickey Mouse.

As we began our flight her symptoms worsened and she spent most of the flight staring at me with eyes filled with tears that pleaded.  Words do not work for her but her face does.  I know her too well.  I know when her actions are abnormal for her.  It may be a minuscule thing but I know it.  Because of her rich medical history of illnesses my instincts of helping her again reach high gear.  Guilt, confusion, helplessness, anger, and constant thoughts flood me.  What could it be?  What is it not?  How can we help?

We landed in Orlando and by the next morning her symptoms had gotten a lot worse and she starting to puddle saliva in her mouth and her breath had a familiar odour.  Aha!  We figured it out that it was some form of throat infection and brought her to see a doctor (thank goodness for insurance!)  We encountered a kind doctor that listened to us and prescribed antibiotics.

Hannah’s pain was so great but we managed day by day with the medication and tons of other meds to keep her pain at bay.  Knowing her pain threshold is high and that she was struggling  hurt my heart so deeply.  I know she is fair game like anyone to be ill but like an infant that is ill …. there is something especially unfair about it.  As her throat pain lessened in about five days we were beginning to see a light at the end of the tunnel.  But then a GI reaction to the antibiotics started.  Hannah cried and used her words “I feel terrible” she said.  Throughout cleaning supplies for our rented condo and her laundry and new meds we continued on our “holiday”.  The day before we left for home all had settled and she was very happy.  In the back seat of our car we could hear our happy ‘on the up-swing’ Hannah at her one woman comedy hour routine.

One day in Orlando we went to see Mickey Mouse.  Hannah loves Mickey Mouse and like I mentioned she previously had not been able to greet or stand within 10 feet of the large characters.  But now it was different.  She was going to do it with antibiotics, advil, tylenol and lozenges in her system.  She practiced “Oh hey Mickey Mouse.  How’s it going.  Hey Hannah” is how the conversation would go in her mind.  I challenged her “Hannah are you going to see Mickey Mouse?  Are you going to be a butthead or a brave girl?” (said in jest and in love).  Hannah assured me she was “not going to be a butthead” and that she would be “a brave girl”.

We stood in line and Hannah’s face and body actions showed it all.  She happily hugged herself and jumped up and down.  I knew she would do it.  When it was her turn she slowly sidled up to Mickey Mouse with her head cocked to the side and down blushing on her cheeks.  She backed into Mickey Mouse and quietly said “Hi”.  I stood back ready to take a picture when the feelings hit.  Shit.  This was not a part of the plan.  Grown ass moms with grown ass kids do not need to cry at the Mickey Mouse meet and greet.  But the stress and emotional roller coaster of the last few days paired with the extreme pride of how much courage this took her hit me.  And the ugly ugly tears ran.

The person in the Mickey Mouse costume looked my way and left Hannah and walked toward me.  The person in the Mickey Mouse costume offered a hug and didn’t let go.  I was humbled and grateful and embarrassed and I don’t know what else.  This person in the Mickey Mouse costume got it and showed kindness to me.

I know that I should not have been so cocky about my pre-trip feelings when things were going so well.  I know that life is about ups and downs.  But seeing her ill like this made me realize she is still a vulnerable sitting duck and I am in charge of her ups and downs.  It was more than a throat infection with gross side affects to the antibiotics.  It was a realization that I am a perma-caregiver and that is a heavy load.

For now I am grateful that we are home and more so that she is well.  Eventually that original blog post about her rich social life will be posted.

I can’t say it

Hannah has rarely said “I love you” to me especially on her own and unprompted. But that doesn’t stop me from trying or telling her I love her. Yet my heart is always saddened when it is not verbally reciprocated. Yada yada yada …. yes I know we’re all “inspirational” and “she shows me in other ways …” 😉 I KNOW all of these things and but sometimes it would be lovely to here it.  Here is our bedtime conversation from last night as I tucked her 21 year old self into bed:
 
Me: Goodnight Hannah. I love you. ❤
Hannah (in a sing song-y voice): Thanks! 🙂
Me (giving her ‘the look’ in jest): ahem … I love you.
Hannah (trying to figure out where she erred and in a sing song-y voice): Thanks … mom.
Me (again giving the in jest “look”) I love you
Hannah (as quiet as can be): love you.
Me:  There ya go …
 
Throughout this all I seem to forget the reassuring words I give to others who mean a lot to Hannah and she cannot face them. Turning her back on them overwhelmed by her love of them. My words to them are “Feel honoured – she’s overwhelmed by your presence. Sometimes the more she ignores you the more she likes you”.  It seems like she will more easily say “I love you” to the dog or profess her love to the cat. or a friend as she self talks about them.   So maybe if I take my own words of reassurance the one she feels deep love for she has the most difficulty to share.  

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.

 

 

 

 

 

 

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.