It shouldn't be so hard!

 

After a long walk and a good cry, I am no longer wanting to shove chocolate in my face, but I am still so frustrated with the system.  It does teach me a lot though.  I used to judge people too much.  I have now realized that the judgement is rarely fair and that shame and judgement only hold people back from achieving their full potential.

I have, several times, tried to set up services for Illyana regarding autism.  I have a lot of funding available because early intervention is key.  But the process has proven to be so complicated and frustrating that we are no further ahead in that aspect than we were pre-diagnoses.  And at this rate, I don’t know that I am going to put anything in place.  This year of funding is almost over and despite my efforts, I don’t feel that anything has happened.

I once was motivated and called several people.  Solely online services do not appeal to me. How do you do any work with a 4-year-old virtually?  She is not going to sit on Zoom and listen to a stranger.  But I could have started my own work.  One lady I called I felt instant shame when she spoke. She didn’t listen to a word I had to say prior to making me feel terrible.  “Haven’t you ever heard of xyz”, “without these services, your child will not have the skills to succeed”.  “I expect to see your name on my list next time I look”.  Thanks lady, for letting me know that I am failing my child and she will not succeed.  I disagree greatly, but thanks for your opinion.

Another conversation included “you knew your child was different early on, so why bother getting a diagnosis if you weren’t going to do anything about it”.  Again, thank you for the shame, with no thoughts about what else I might have done, or how hard it is to get things done in a world where everyone is short staffed and underpaid. The waitlists are long.  Covid complicated things.  But yes, all my fault.

I am not saying it is not my fault.  Some of it is.  After being shamed, I wore that for a while.  Said things like “I would rather my child get no services than have to work with that person”.  And I don’t regret that.  She does not need to be exposed to people who shame.  She does not need to be shamed.

Pediatrician looks at you with a disapproving glance when you say that she is not accessing services.  She tells you the importance of early intervention.  Reminds you that once the funding expires it is gone and it is there for good reason.

People say that you must not understand the importance of early intervention, because once you see it working, you know what a good investment you have made.  They don’t acknowledge waitlists, lack of services, or anything you might have tried already.

Decide to look past the negative interactions, I can overreact at times after all.  Services in Quesnel are offered at specific blocks of time.  These blocks of time mean that parents likely cannot work.  For pre-school aged children, the block of time is 9:30-11:30.  How does a working parent get their child to this time block?  Give up every break to run to daycare to get my child (who has been there less than 1 hour), run her to program and run back to the office, in my 15-minute break.  Do it again in 2 hours.  Cannot schedule anything in the morning at work because you have to leave twice before lunch.  Now the only break you get is your lunch break, but since you didn’t schedule anything in the morning and have things to do, likely miss it to get your job done.  Once she hits Kindergarten, the times change from 12-2. Equally hard to do.  They say, ask your father-in-law to do it.  Do you think she will happily get picked up early by one of her favourite people (this likely includes the fight I will see), leave them in minutes to go to program, participate in program, and then either get picked up by him again or head to an after-school centre?  Still not sounding ideal to me.  Where is my own sanity in this?  How is it beneficial to my child to have so many transitions in a day?

There is an option to find your own people to provide the services.  This sounds good, maybe they can work around hours that will fit my life better.  But they need to be trained and supervised by the company.  Basically, I can recruit new employees for the company that is receiving thousands of dollars from me.

Others say that early intervention isn’t required for everyone.  Others say that ABA is not all its cracked up to be.  But at the end of the day, you don’t have training in what’s best, or what your child needs.  You are fumbling along, trying to do what’s best for her, while maintaining some sanity.  You are trying to be ‘just a mom’ and not a therapist.  You do not want your house and all interactions to become ‘therapy’.  But when you say that it feels like the others very much disagree with your choices.  You try to learn as much as you can, but you are not a BI and do not want to become one.

It feels like a no-win situation.  It already feels terrible.  But then they shame and judge.  I am normally pretty good about not making up stories about what others are thinking.  But those words keep cutting me to my very being.  Those words, even if they come without shame and judgement, still hurt, and still bring up the ‘not good enough’ story.  That is one that I know well and try to fight every day.

My Team Leader, who is also a friend, who has walked a similar journey, says we will figure it out.  But the idea of running around like that is stressful to me.

Our CDC consultant offers to brainstorm ways as well.  She wants to go out of her way to help (which she cannot).

Not everyone shames.  You are not fully alone, despite how it feels.  You might have to be creative.  You might have to look for ways you never thought possible.  You might need to lean on new people.  You might need to be vulnerable and ask for help. 

You need to choose what sacrifice is best for your child.  And you know that you do not know much about what she needs.  Sure, she needs you to love her unconditionally, to help her, to teach her.  She needs a mom who is not going insane by the activity level and workload stress.  But she also needs more than you can offer.

It is absolutely insane to me that this is so hard.  I also know that using the funding for the equipment you need, or to get trainings paid for, is also incredibly hard.  Today I was told it has been made even harder in recent months and lots of requests to use funding have been denied. 

This system is due for an overhaul.  I don’t know that the proposed overhaul makes anything easier (I suspect harder as there is no funding to do anything privately), but this is not working.  Getting services in place for a child should not be this much of a fight, it should not leave parents exhausted and doubting themselves.

 

The Journey

 Before I start this post, I want to be clear that my knowledge about autism spectrum disorder was very low 3 years ago.  Since starting my job, I have learned so much.  I now “see Autism everywhere".  Obviously it helps that we live it as well!  I would also like to acknowledge that I know everyone does their best and that this post is not a criticism of anything, except maybe the system.

At work, we often see grade 12 students who our screens “scream" autism.  Sometimes I wonder how a child gets to be 17 before anyone suggests that ASD could be a possibility.  The diagnostic criteria has broadened so much in the last years that the kids we grew up with that were “quirky" or “weird" or “loners" would likely get the diagnoses in today’s criteria.

But let me tell you a story.   I would love know where you give up and accept what everyone is saying and ignore your gut feelings. Or do you make it all the way?

Your very cranky infant develops feeding  challenges.  They blame your milk supply and acid reflux.  You attend regular groups at the local Child Development Centre but no one offers help as your baby screams through group or when you struggle with nursing. Until you are hospitalized. Then you get referred to every team at the CDC. They give some suggestions but really you are doing most of it already so they tell you to just stick with it.  At some point you ask if they think that maybe someday, you will get some sort of diagnoses.  They say no, if anything, its some attachment challenges due to the feeding challenges.

You celebrate your baby's first birthday at BC Children’s Hospital.  Here you learn that your baby appears to be developing normally despite being diagnosed as “failure to thrive” due to feeding challenges.

At some point, someone suggests Autism Spectrum Disorder.  You do some screens and baby scores in medium or high risk.  You ask your daycare what they see.  They tell you that they don’t normally tell parents if kids are developing differently or slower than peers because some parents don’t react well to this news. However, they humor you and do an autism screen.  Baby comes back medium to high risk.

You ask your pediatrician about Autism and bring all the reasons why you think this, having done some research.  The pediatrician tells you that they know autism (the boy in the waiting room who also has other challenges, that is autism. Your child is not).

You ask your family doctor about Autism and to make a referral.  He tells you that all toddlers are autistic.  

You request and receive a new pediatrician.  Again, clearly not autism. This pediatrician lists half the symptoms your own research tells you are signs of autism in toddlers but says it is not autism.

You tell the CDC that you wonder about Autism.  They agree to put someone at daycare one hour a week to observe.  For a year, this person says the behavior can still be explained by being a toddler.

You consider paying $3500 for a private assessment.  You still need someone to sign the referral document.  You are told by the CDC that you will be wasting your money at this time.

You meet with a Speech Language Pathologist.  They say your child doesn’t  have red flags.  You tell them all the reasons you believe your child to be different. But they say wait and see.

You beg for and get one meeting with an Occupational Therapist.  They do not see anything you say happens in that hour.

You tell your friends that you think your  child is different.  They tell you that you are over reacting and everything is fine. Stop worrying.  Now you wonder if you have made your child different by trying to convince the world that your child needs an assessment.

Finally, 20 months after you first question if this is autism, someone hears your reasons and says “maybe".

Meanwhile, you keep seeing more and more things.  You keep bringing up autism at meetings.  You keep pointing out the new developments.

This might be a good time to point out that publicly funded Autism Assessments have a 2.5 year waitlist.  Referrals for an Autism Assessment can come from 3 sources: family doctor, pediatrician or Speech Language Pathologist.

Have you made it this far? Have you accepted that you are crazy and pushing a “disability” on your child? Do you feel like a terrible person? Or are you sure and confident in your beliefs?

The ONLY reason that we were able to get a diagnosis at the age that we did is because my family doctor knew that my team has a good reputation for understanding Autism.  He said “I will refer because of where you work but I don’t think it is autism".

It is no wonder that kids make it to 17 without ever hearing the word Autism.  In our world, unless you have big “meltdowns" no one acknowledges you. If you are not well connected and knowledgeable and willing to fight for your kid, you don’t stand a chance.  If I did not work where I do, I might not have had so much fight either.  So working where I do got us the referral we needed (despite it being done to shut me up) and gave me the tools to get us what we needed.  If I didn’t work where I do, I am not sure we would even be on that 2.5 year waitlist yet. Would anyone have told me that my child played differently? Would anyone have listened to me? I remember feeling like such a failure that first year. And then I was told it was attachment damage. I felt even worse.  She was called a spirited little shit by a pediatrician.  

I get why people cant win in this system.  I am thankful that we did.

Outraged

 I am outraged for a graduate this year.  A graduate I know personally.  She deserves the stars and moon, and the world won’t even buy her lunch.  The class of 2021 is largely a forgotten graduate class due to the lingering Covid19 pandemic.  Last year a huge deal was made for the class of 2020, the pandemic class.  This year they get nothing, despite restrictions lessening.  So loved ones are left trying to show their graduate how special they are.

The young lady I speak of is Indigenous.  Indigenous children in Canada have a 75% graduation rate, and a 48% graduation rate if living on “reserve".  Based on those facts alone, let’s celebrate this graduate!  She tells me she is THE ONLY Indigenous graduate in Quesnel in 2021!  Celebrate her more!  She isn’t sure if her Mom graduated high school and her uncles did not.  Her grandparents are Residential School Survivors.   If this meant nothing 2 weeks ago to society, it should mean everything following the discovery of a mass grave of missing children who were murdered at a Residential School.  Celebrate the hell out of this young lady and the massive achievements she has had and the obstacles she has navigated to be here.  My heart bursts with pride in knowing her.

This young lady won a “Cinderella" prize, where she gets her hair and make up done, access to a free dress and a photoshoot!  Finally, something to celebrate the role model she is, to her community, to the world, to the generations to come.  Research shows that young people who see people they identify with succeeding are more likely to succeed themselves based solely in that role models example.  As someone who loves this young lady very much, I reached out to the photographer to see if I could add a paid photoshoot to the prize package.  I shared how important this young lady's grandparents are to her, how they might be her biggest supports.  Tears filled my eyes when the photographer said that they ”would see" if they could grab any family shots.  They “will see"?!?!  I didn’t ask for anything free, I asked if I could add a paid addition to the already existing photoshoot to capture important people in her life.

I then reached out to Big Brothers Big Sisters, who matched this young lady and I six years ago.  We remain an active match until school ends.  I asked what they do for grads.  Pre-pandemic, they used to take us out for lunch every year for our “match-iversary".  That didn’t happen for our 5th year.  I was told we would do something before she aged out.  The email I got back said “we don’t normally do anything for our grads".  Pardon me?!?! She is graduating high school, aging out of your program?! You will be closing her file and you cant do anything?

This was a last straw for me.  I cried harder for her than I have for myself in a while.  This young lady deserves all the celebration and will be getting nothing (please know that I know her family will celebrate her, I know she doesn’t get “nothing").  I am outraged at the community.  A photographer who will not add a paid shoot to an existing shoot to make it more special.  An organization all about supporting kids that just closes the file without a word.  May as well tell her that she means nothing to you, was just another number.

Well she matters to me.  And I will go out of my way to make sure she knows how important and special she is.

Watching her grow from a grade 7 kid to a graduating adult has been an incredible experience.  She has taught me so much about Indigenous culture, the intergenerational trauma that exists from white man.  We have gone from talking about cute YouTubers to how to fight racism in our community.  She has gone from someone who denied her own race, culture, identity, to a woman not afraid to stand up for who she is.  She has lost friends who were not ready to see their privilege and couldn’t handle having it called out.  What a brave statement to make at 17/18 years of age.  She has struggled with school but has also hunkered down and got it done.  She has been called all sorts of names and stood up proud of herself at the end.  She might still be figuring out who she is, but she is doing such a wonderful job of it.  She didn’t waiver from me when I was pregnant and cranky, or when we had to meet at my house so I could breastfeed baby while she continued our activity.  I don’t think I have ever had so many brave, open conversations about so many hard topics.  I am so proud of this wonderful young lady.  As she plans to move on with her life, I know there will be a hole in my life which she has filled for 6 years.  Six beautiful years of cultivating a friendship. Six beautiful years of watching a young lady bloom.  She is so special and I am so happy that we had this opportunity.  I am ashamed that the community is not willing to celebrate her more.

Challenges of griefing

It always surprises me when your birthday catches me off guard.  Today you would be 67.  You have been gone for 4 years.  But you have really been gone for closer to 20 in my opinion.  Today I feel some sadness and some anger and some hurt.  I probably always will but I’m tired of being hurt by someone gone.  Some of the last coherent words you said to me were that you had stopped being a part of my life to give me room to live it.  I’m still confused by these words.  You purposely stopped talking to your daughter.  Did you know the pain you had caused over the years and wanted me to heal? Did you just get tired of me? Was I not good enough to be a part of your life anymore? Did I do something wrong?  I know in my mind that I was not the problem but my heart still feels the pain.  All I wanted was to be your special little girl.  I wanted to be important to you.  I remember very clearly when you stopped calling every week.  I remember very clearly you coming and taking my sister away without talking to me. I remember very clearly when I stopped mattering to you.  But I don’t know why.  And so I kept trying.  I called you.  I visited you.  I found ways without a vehicle to get to your house when you worked in the city I lived in.  It was always me.  I put in all the effort in the last 15 years of our relationship.  And then you decided to “let me live my life” and left me.  I remember being denied access to your dying days, your local friends seeing you more than me, after I drove 10 hours after working all night to see you.  I remember the pastor at your funeral telling me he was sorry I didn’t know the man everyone else knew. I didn’t know what he meant. Was I not important enough to come up in your dying days?  And then I listened to my cousins talk about how you were always there for them and how important you were in their lives.  How come they were better than me? Why wasn’t I enough? Why couldn’t you love me?

So I have all these emotions and do you know what? They make me angry.  You walked out of me 23 years ago.  I was between 10 and 13 when you stopped calling.  I was 9 or 10 when you moved my sister to your house.  And that was the end.  You had one child you didn’t need two? I know how much you and my sister fought. Did that make you decide you didn’t need any? You met my step-mother and forgot about your previous family.  Why is it so hard to forget about you? Why does it still hurt 23 years later and 4 years after I said a final goodbye.

Most days, I live my life as I always have.  With you a part of who I am, but a distant memory.  Some days the memories hurt.  I try so hard to only remember the good times but that hurt will always be there.  You chose everyone else over me.

I also hate that you can hear the 13 girl in me today.

I pray my husband will always be a better dad than you were.  I pray that even if we end up separated, she will always be his number 1.  A girl deserves a daddy.

Covid19

I have never felt like a good stay at home mom.  I want to be out, doing things.  I like playdates, play groups, going to the parks.  I like my job and I like that I have “alone" time during it.  I believe me going to work makes me a better mom.  I am the Mom in the memes that were out when the restrictions first came in that made fun of Moms who didn’t want their children at home, didn’t want to “parent".  I love my child fiercely and am her biggest fan and strongest advocate, but I feel like a better Mom when we have some time apart.  I also know that she learns more at school than I can teach her. So along comes Covid19 and it changes everything.  We are all at home.  There is no play dates, no groups, no parks, no friends.  Just Mama, Daddy and Illyana at home.  All day.  Every day.  We are starting our 4th week.  I have to tell my 2 year old daily that we can’t go to the park at the end of our road because the park is closed.  It doesn’t look closed but we are not allowed in.  She is a rock star and accepts it pretty well.  She is happy to have Mom and Dad home with her.  She also doesn’t like that we go to the store without her.  She loves shopping.

But we all know this.  Covid19 has been hard.  We are all going through the same things.  There is no end in sight.  Its Easter weekend and people are travelling and prolonging this for the rest of us.  So we do what we can with what we have.  We FaceTime BG every couple days.  We call Poppee and our Grannies sometimes.  And we paint.  I have never considered myself crafty and it has never been my favourite activity.  But my sweet girl enjoys it.  So Mama went to the dollar store and bought art supplies.  And we paint daily.  We have painted with our hands, yarn, sponges, paint brushes, and bingo dabbers.  We picked up pine cones one day in a walk and are going to paint with those as well.  I bought shaving cream and glue so we will paint with fluffy paint too.  And Illyana enjoys the daily activity.  If any readers have any ideas on what else she might enjoy I am all ears!  Lots of the crafts I have found out there in internet land are things she might enjoy having but will not enjoy doing herself at this time.

We are fortunate that we have a yard and a dead end street to play in.  Illyana loves to play outside.  The snow is finally melting and we might be able to play in the grass soon.  She has been enjoying her strider bike in the basement, I want to try on the grass where she has more room!

The point of this rambling? I have a generally happy two year old at home with her favourite people (or at least some of them lol).  We are doing pretty good.  I still don’t feel like a very good stay at home mom, but we are settling into our laid back, self-isolating routine.  Don’t get me wrong, we all want to go back to work and school.  We miss our friends and our daily outings.  But we are creating memories and enjoying time together.  Yes, this is challenging but we will get through it.  I am finding ways to be a stay at home mom.  We are crafting and doing things we can all enjoy.  We are giving lots of bugs and kisses and tickles and games.  She may not understand why, but I know she feels the love and attention of her parents.  May that be her only memory of Covid19.  Weeks of quality time spent with mom and dad.

Just a tired mama

I am struggling.  This month has seemed like it has tested me a lot.  We did a stomach bug and a cold.  I missed something like 9 days of work in January.   I think it was more than I worked.  And I got the cold too.  I’m on week 2 of it.  Feel mostly fine but still sick, you know? At any rate, I’m tired and struggling.

I went to the feeding workshop for the second time.  As usual, Illyana doesn’t really fit into a category or box.  She is between a problem feeder and a picky eater. They gave all these great ideas for picky eaters.  Except we have spent a year implementing these ideas. When the feeding team asked at the end how it was taking it for a second time I said that it was interesting because we have different challenges now than we did last year but we still have the challenges.  I then burst into tears.  Illyana basically didn’t eat for 2 months and no one really has suggestions on how to help her through that.  How to help me through that.  We have this massive team, which is amazing, but at the end of the day, it’s just us on the ground.  And I feel like we are failing. Please don’t tell me I’m not.  I know I am not but it doesn’t change the feeling.  I know it is a daily thing and we rock it a lot of the days.  And I know she knows she is loved.  Love is not lacking around here!
Someone told me that as a helping professional looking at an autism assessment, my world is going to shrink.  They were absolutely correct.  There are support groups in town for parents with children with autism.  The majority of these families have a file in my office.  How do I go to those groups? Neither those families or me will be comfortable. Also how do I stay just a mom when they know where I work? I am there for my own struggles not to work through other people’s based on my job.  I know of several professionals who have children with autism who I hope I can lean on.

I submitted an application(?) for a private clinic.  They have a pediatrician and the psychologist.  It sounds like we might see the pediatrician in a couple months and the psychologist in the fall.  I need to get a referral from our doctor and I can’t see him for 2 weeks.  But I also talked to NHAN and they said they can’t  test until at least 30 months. They are trying to pilot a program to streamline toddlers but I didn’t understand it was a thing yet.  We also won’t get into NHAN until the Fall of 2022 with the current waitlist.  I don’t really know what to do about it all.  I guess we see the pediatrician and see what he says.  30 months isnt that far out.  September 2020.

Our Occupational Therapist, who we are on a waitlist for a sensory profile, is going on maternity leave next month.  This is something that I think might actually help us.  I need to look into private OTs and see what we can do for her that way.  Maybe if I knew what her sensory challenges are we could work with food better? It’s very possible that there are no answers for Illyana but I feel like I need to do something.  If I wait and she gets an autism diagnoses, private professionals will be included in her funding and we wont have to pay out of pocket, but if it actually helps is it worth waiting for? Do we pay for everything? Do we wait and see?

Everything feels so overwhelming and I am so tired.  And I am just having a hard day.

Shot down

We saw the pediatrician today. He actually let me talk today, and I sidetracked him enough that he didnt give me hell about the minimal weight gain (a year ago we had no weight gain, so some is still better!), he didnt give me hell about not seeing the pg hospital dietitian (we are seeing one in Quesnel). But he also didn't support a single thing I said. The fact that Illyana is on an all milk diet at 21 months meant nothing to him. It didnt scream sensory issues or anything. It certainly could not mean Autism in any way shape or form. When he heard she doesn't sleep he blamed it on the co-sleeping. I don't think he appreciated me saying the co-sleeping is a product of our 3 week hospital stay that traumatized her, but it is. He told me to sleep train, cry it out method. Apparently it means nothing that Illyana wakes up screaming 2 or 3 times a night whether I am sleeping beside her or not. That it can take an hour to calm her down. Instead he heard that she wants to play and talk to me because I am there. She hasn't played in the night in over a year. He somehow heard that I dont sleep well sleeping beside her so everything will be fixed if she screams for 8 hours. Part of our cosleeping is that I am already exhausted and we sleep a little better beside each other. I was sleep training before I went back to work for reason. And the fact that we have never slept through the night is certainly not a sign of Autism either. I said that she is no longer doing things she was doing 2 months ago. He shrugged it off. He asked if I was working with the CDC because they do great work. I said yes and that the CDC agreed it could be Autism. I said my daycare scored her in the high risk category for Autism. Nope, Autism is not a possibility. I said I was hoping to do a private assessment. He said you can't test this young. I said the research says you can test by 2 years which we are coming up on. He disagreed. I said I have talked to the clinics and they said I can but I need a pediatrician and speech language to agree with me. He said you cant.

He can disagree all he wants, we already have a referral into the assessment clinic. I dont need him for that. We will just have to wait in line and not pay for an assessment. She will only be 3 when our time is up, so we are still ahead of the game, I just want to give her everything we can now. I hate waiting 18 months to be able to put the services I believe she needs in place. We could probably pay out of pocket for the services instead of paying out of pocket for an assessment though. It's just so frustrating to me. He knew I knew more about toddler autism than he did so he had to stay in charge. Also, he has never done any of the assessments she would need for him to say it could be. He has never looked at anything but her weight. He didnt care that she snored or was always sick or doesnt sleep well or anything else I might bring up. He has always just looked at her weight. Today was the first time we had a real discussion so that is a win ...

He acknowledges that she is a challenge. He said she is "just spirited". He also said that she will likely remain a small eater and a small child and that's just who she is. I have to agree with that, I feel like I have been saying that for a year.

Back in 6 weeks for another round with him.