Unmasking Autism

 I am reading a book called “Unmasking Autism" which is focused on undiagnosed adults learning to embrace who they are and not who society needs them to be. I identify with a lot of the book for people I know and am enjoying the learnings for myself. I identify as a neuro-typical person who has some quirks but I do not identify with being on the spectrum. However, I am raising a child who has been diagnosed. I believe I have a partner who fits  this book.

Dr. Devon Price, author of “Unmasking Autism" claims that masking your autism, or your differences is neurologically damaging. He states that one should just be themselves and stop hiding pieces to fit society.  This sounds amazing and I hope that one day, society can be that place. I believe that every person on the planet hides a part of who they are at some point, although I fully accept that the neuro-diverse population is required to more often. He states that Applied Behavior Analysis (ABA), which is the primary “treatment” for autism, is cruel.  The purpose of ABA is to help Autistic  children learn to fit in better with society, or, to learn the mask their differences. ABA used to involve electroshock therapy, which definitely is not okay. No parent has children hoping they will be shocked into normalcy.   

I have my daughter doing some ABA therapy.  I do not believe I am torturing her or she wouldn’t be there.  I also do not feel like I am trying to make her someone that she is not.  This is where I struggle.  We attend Behaviour Intervention (BI) because her brain has developed in ways that require assistance.  She struggles with social skills that many of her peers have.  She is rigid in her play.  These things make her feel like other children do not want to play with her sometimes. One of the skills she works on in BI is learning how play works and how other people might think. This seems like an important skill for life.  I want her to be happy, and humans are social beings. She needs to have some social skills.

Dr. Price argues that the world should meet her where she is at so that she can be herself. Does that mean that no support should be offered? I don’t want to have her suffer but I also want her to thrive.  If being taught each step of making and maintaining a friendship helps her thrive, then doesn’t that help her more than not providing some sort of intervention? The world would be a better place if we made accommodations for everyone.  Most of the accommodations that neuro-diverse children could benefit from, would actually also benefit the neuro-typical classmates.  The same can not be said the other way.

This has really made me stop and think.  My partner has a good paying job and is successful at it.  He has created a niche that works for him. However, life skills are a place where he struggles .  According  to Dr. Price, it seems like he should just be left to his own devices as long as he is happy.  The trouble is, I don’t think he is. So how do we help with that? As a parent, that’s what I am trying to avoid.  I want my child to be able to function without it hurting her. I want her to be able to navigate the world to the best of her abilities.  And I think that she might need some additional support to get there. This doesn’t make me a monster. It doesn’t mean I think my child is broken or in need of fixing. I do not try to hide who she us or to take away parts of her. But I do have her in a BI program, doing ABA.

I struggle a bit with her neuro-diversity. I want her to be as ‘normal' as possible. I do not want her to be viewed as different, even though she is. I have been debating for months if we continue BI and miss school time, or skip BI for school. I don’t think there is a correct answer.  Dr. Price would say my desire for “normal “ forces a mask onto her.  I don’t want that. But I also know that “different" gets bullied, teased and harassed. Which is worse? Masking who you are, or being bullied for who you are? To be authentically you, or to have had to learn life skills even if it was hard?

The Time to Change and Learn is Now

 I have never understood food – what to eat, what not to eat, what the body needs and doesn’t need.  Sure, I knew that fruits and veggies should be half your plate and you need 8-10 servings a day.  I didn’t do it, but I had heard that enough to know.  I knew that you needed a protein and a carbohydrate at most meals.  But that’s about the extent of my knowledge. I kind of just ate.

When I was pregnant, my diet was a problem. I had ketones in my urine throughout the entire pregnancy, which was explained to me as that my body wasn’t getting enough nutrients.  I was 180 lbs when I got pregnant, and topped out at 194 lbs, yet Illyana was born at 7 lbs 4 oz.  I had borderline gestational diabetes.  I tracked my diet, my ketones and my blood sugar levels and tried my best to do what I was supposed to do.  It was hard and exhausting.   I came out of the hospital, having had Illyana, at 150 lbs.  That stayed off for the year I breastfed, despite me eating anything in sight.  Then I went back to work, and quickly gained it all back, plus some.  Four and a half years after having my baby, I weighed 210 llbs.

In 2019, Illyana was hospitalized for failure to thrive.   She lived on milk with whipping cream in it for the majority of her calories.  The advice was to eat the same meals, to show her how to eat.   At some point, I stopped cooking two meals – one of me and one for her.  I started living on the Kraft Dinner that she would eat.  We stopped buying veggies at all because they would just go bad in the fridge.

In 2021, a friend suggested we try JuicePlus.  JP+ is a whole food supplement.  It comes in a chewable form and a pill form (and whole food based protein products).  She said that once a body starts to have fruits and veggies, it will crave more.  She said that sugar cravings would decrease.  She said it would help bridge the gap between what we were eating and what we should be eating for fruits and veggies. Health benefits galore. What did  we have to loose, we weren’t eating any!  So we went ahead and ordered.  The chewables took a bit to get used to, but I would snack on them and often Illyana will eat them.  At one  point, the rule became that she could have more candy after she ate her chewables.  She was game and now likes them, although wont eat them daily. She even decided that the child dose of 2 chewables of each of the three flavors wasn’t enough, so now eats 4 of each   Every day she does is a win though.

As for me, within a couple of months on JP+, I noticed I wasn’t reaching for my chocolate stash at 3 pm (still don’t, its now there for my coworkers).  I was having less dessert.  I had a bit more energy.   We were sold.  I signed up to be a partner and make a small commission on selling them.  Turned out that selling it wasn’t something I really enjoyed despite believing in the product (still make a commission though, if I have inspired you!).

Fast forward to 2022.  I weighed 210 lbs, the most I had ever weighed.  I was eating ¾ box of kraft dinner 6 nights a week.  I felt gross.  I was tired all the time (this has long been a complaint of mine).  I wasn’t sleeping well.  Then all of a sudden, I started having gallbladder attacks.  The ultrasound showed “multiple gallstones".  The doctor recommended he remove the gallbladder.  I was a bit perplexed by this, as I don’t eat at fast food restaurants often.  But when I remember the rapid weight loss of pregnancy, which likely started the gallstone problem and that I lived on processed food, it makes sense.  After surgery, a prolonged heartbeat interval has me being sent to another specialist.    I decided I had to do better.  I am 38 years old and do not want the rest of my life to be riddled with health challenges, doctors and specialists.

I signed up for Noom, a weight loss program that uses psychology to help make long term changes with your relationship with food.  This program labels food as green, yellow and orange.  Green foods are fruits and veggies and whole grains – you can eat as many foods in this category as you want.  Yellow foods should be eaten in moderation.  Orange foods should be limited, but are still necessary.  This gave me some good understanding of foods I was eating.   The first week of logging my food was mostly orange foods.  Green foods fill you up longer and have less calories.  This week I have been mostly in the suggested ranges, and have enjoyed a treat or two.  While I do not think that this is the best way to measure  calorie intake or the foods one eats, I appreciate the suggestions of what colours the foods are.  I often double log, also using myfitnesspal (it would be nice if they talked to each  other) to see how I did on protein and fiber content.

Now I am learning that oatmeal is a high calorie food but quinoa is low calorie.  I had quinoa and homemade apple sauce for breakfast and will likely feel full longer than if I had made oatmeal.   I had no idea prior to this.  Now I have almost cut sugar from my coffee (actually, being home this month have no had coffee).  I have a treat about once a week. In fact, the fruit JP+ chewable feels super sweet.  I now prefer the veggie one, which was the hardest to get used to.  This week I have bought eggplant, zucchini and avocado which are rarely on my shopping list.  I have explored some new recipes.  I have learned that my delicious melted cheese in a cheese bun sandwich is all in the orange zone – lots of calories without a lot of benefits. And I am often quite far under in calories but am not feeling hungry.  I am going to try to cook more often, from scratch.  I have learned that the processed meat I buy, while easy and fast, is full of added sodium and sugars. 

I wont say that I have a good understanding of food yet, but I am appreciating the changed journey. Going back to whole, unprocessed foods is part of the key.  Including more fruits and veggies is key.  Its been easy while I am off work and have nothing to do.  It is important that I find a way to continue it once back at work.  Hoping that building habits while off helps once I am back.  I finally feel like I am starting to understand my body and what it needs.  I saw in the summer, how much energy one can have with some good nutrition and exercise.  I felt like the Energizer Bunny.   One night I played a game of soccer and then came home and went for a run because my body still wanted to move.  Who is that person?!?!  That is who I want to be.  I want to make myself healthier. I want to be able to play with my daughter and not be on the sidelines all the time (I have hated this month of being sidelined).  I want to live a good, long life.

The time to change and learn is now.

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.  

Just eat my love, please

I always thought I would be a good mother but I am sure not feeling like I am. Illyana is on hunger strike. She has been for a while. The cold that started it has come and gone. Another round has hit. We have started cheering for every morsel she puts in her mouth. It's still such a small amount. She is so skinny. I'm terrified for our next pediatrician appointment next week. I dont want her back on a feeding tube. I dont want to go back to the hospital.

I was at my doctor for myself and he asked about Illyana. I said that she wasnt eating again. She has never ate breakfast. He asked what I give her - breakfast doesnt need to be cereal you know. I said that morning I had given her ice cream and she still didnt eat it. He told me to get back to the dietitian but i know she has nothing else to offer me. I saw her about a month ago. I have called to make an appointment but missed the office before the holidays. My doctor said I needed the appointment to cover my ass basically. He said he didnt want anyone to say "what did the parents do for this kid". The parents have done everything. Everything.

Do you have any idea how hard it is to watch your kid not eat day after day? How hard it is to not lose your patience when she says no to 20 different meal items at every meal? I offer everything I can find. I'm currently allowing cookies at every meal because at least they have soemthing in them. I dont know what else to do. I'm at a loss. I dont have any more to add amd she wont take anything. If she doesnt want it she throws it at me. They tell me that kids wont starve themselves but it sure feels like she is. Her energy level is still high and she still has wet diapers. So maybe she isnt but she sure isnt growing. She remains in 12-18 month clothes. She is 19 lbs. I know the pediatrician isnt going to be happy.

We are seeking an autism assessment for her. Toddler autism often shows as minimal food intake, lack of sleep, mixed development, speech delay. Illyana has always been different. She went on the speech language waitlist before she was a year and we have just started seeing the pathologist. She is still up every couple hours in the night although she is finally napping most days. Her eating skills have been deemed appropriate. Her eating problems are behavior and not medical. I'm hoping the pediatrician acknowledges all of this and will do whatever I need to seek a private assessment. We could have a private assessment within 6 months and put in more supports for her. We are on the waitlist for a sensory profile with the occupational therapist. She will be receiving extra one on one support at daycare in the next month or so. I am seeking all these things but they will not make her eat better. They will not take away the stress it causes me when she wont eat.

I know I am doing everything for her. I know that she is lucky to have us for her parents. I know she is ahead of the game because we have had all the issues we have had. We are ahead because I work in child and youth mental health and my team leader encouraged us to pursue an assessment. But my patience is thin and I feel like such a garbage mom. I want to be more for her. I want to be everything she needs. Maybe I am but I dont feel it. Mostly I just want her to eat. Nothing else about her bothers me except that she wont eat. Please eat my baby, you are mama's world.

Mom Ramblings

Illyana is sick.  It is just a cold but she has been sick for 2 months.  It’s so hard watching her be sick.  I know every parent can attest to that.  What I am really struggling with is what illness means for Illyana.  Like most of us her appetite decreases when she is sick (fevers seem to be the worst).  But Illyana has been 15 pounds for 4 months.  We have  weigh in next week that I am not looking forward to.  I am afraid that because she is sick and not eating again we are going to be re-hospitalized.  This is something the pediatrician hinted at when I saw him last week.  He said that he would have left Illyana on a tube until she gained substantial weight.  He figures that Children’s Hospital ignored the fact that she had been 15 pounds since December and focused on that she had a cold and lost weight.  Based on these comments, I don’t know what a poor weight gain will mean.  So the fact that Illyana is sick (again? Still?) Is worrisome.  She had been doing pretty good with eating, despite having a runny nose, but since the fever started a week ago she has done far less well.  I’m not sure shes eaten a full meal in a day in the last week.  She is drinking milk and I am putting as many calories as I can into her milk.  Milk with whipping cream; milk with milk powder.  She won’t drink chocolate milk or milk with yogurt.  The last couple days she has been less energetic and less happy, making it that much harder on me.  I  am hyper aware of her caloric intake and it stresses me out when she doesn’t eat.  I then find myself frustrated that she isnt eating.  Part of encouraging her to eat is making mealtime enjoyable and cheerful and happy.  Me being stressed and frustrated makes for none of those things making it a unhelpful cycle.  I know this but I still end up there.  I know that knowing I end up there is the first step in trying to change my reactions but its hard when I m so worried about her.  I don’t want to go back to the hospital for tube feedings.  Illyana is finally starting to settle into some sort of a routine and to be calm again.  The last trip to the hospital really screwed us up.  Not to mention my job.  I want to be at work.  I am excited about my position and think I will really enjoy it.  But I have successfully worked 2 full weeks of the last 8.  And I want to be there.  In January and February I felt like something was missing in my life.  I realized it was having a purpose beyond my home (which is an incredible thing to do I just needed something more, including adult conversation).  Me not working is not an answer to our problems right now.  My Team Leader has assured me that I am not going to lose my job because I have to be with my child (I know that should be a given but I feel like a crappy team member and crappy  hire).  I felt like I was skipping work when I saw my manager at the store on the day Illyana couldn’t be t daycare.  Annoyingly I thought illyana wa feeling better at day and then she got worse 
I realize this is rambling, my life is rambling.  I don’t know how to help Illyana.  I don’t know how to make her healthy.  I don’t know how to get her to eat more. I think she gets so sick because she is so little.  Her 15 pounds just cant fight all these colds at daycare.  I can’t pull her from daycare because I don’t have a support system that can take her and allow me to work.  Nick works night shift and can’t be awake all day to watch her.   We only have one family member in town and he is not well.  My peeps work.
I know there are no easy answers and I know that every parent struggles in some way with all of this in one way or another.  I’m just struggling right now.  I am also realizing that these struggles are maybe just beginning.  I’m afraid (not terrified but worried?) That eating is just the beginning of our struggles and that more is coming down the line.  There is just something different about illyana.  Don’t get me wrong, she is perfect, just different and that’s okay.  We just need to keep doing our thing and dealing with whatever as it comes our way.

But today, I am struggling.  Illyana hasn’t eaten well since last Monday.  She is an unhappy sick today.  I would do anything to make her happy but I don’t know what to do besides wrap her in hugs and cuddles.  Maybe that’s enough but it doesn’t feel like it.

Grief

I talked with  mom of a “unique needs" child today and she helped me understand a lot.  I need to let go of the idea of what parenting looks like and accept our reality.  Illyana is not quite your typical kid and she needs to be treated for who and what she is.  And I need to make her needs work for me.  Cheering for her is unnatural to me but she needs it.  Illyana is so socially motivated and I am an introvert.  We find a level that works for us.  And I might be cheering lots of things I never dreamed I would cheer for because that’s what my kiddo needs.  But the part that really got me is that I don’t just need to let go of my ideals, but I need to grieve them as well. This is not what I expected and its not what the majority of my friends have dealt with, but obviously it is what our adventure is.  Illyana may or may not grow out of her unique needs and we may or may not add other unique needs to who she is.  But she is perfectly Illyana.  I am still kind of in denial so the grief is still to come but its getting closer.  Maybe the grief will live quietly or maybe it will explode out (I’m kind of a one or the other type girl).  But when that grief does come, I already know today’s conversation will make it that much easier.  It’s not grieving my child; its grieving expectations that don’t match reality and moving on to accept and embrace our reality.  I’m in the perfect job for a unique needs child as I get to learn a lot about mental health and some healthy means of coping for all of us.
It really does take a village to raise a child (and support a mama) and I have learned how big and wonderful our village is in the last month.   Thanks for being part of our village

Calories

I’m frustrated. What else is new? As you know, Illyana and I spent 18 days on the hospital recently. All sorts of tests were ran and it was decided that there is nothing wrong with Illyana, she simply does not consume enough calories. Except that it took 18 days of trauma for this to be determined. She had a tube in her nose forcing formula into her. The tube had to be inserted multiple times because they struggled to tape it to her face in such a way that she couldn’t pull it out. She had blood work done three times. Eating became a bigger deal than I would like it to be. Our sleep schedule was disrupted. Daily she would be woken up after falling asleep by a medical professional needing something. At night she was still poked and prodded although she, thankfully, slept through most of those. She got even less sleep than she does on a regular basis. I had to hold her flailing little body down until she would relax into sleep. If she awoke in the night, she sought me out, seeking reassurance she wasn’t alone. And after 18 days of unknown territory, with stressful visitors, we were told to carry on as we were previously. Except those 18 days changed everything. Nine months of sleep training is out the window. Illyana is terrified if I am out of sight. She will still only fall asleep touching me. She slept through the night at the hospital. Last night she was awake every hour. Our routine is gone and we are re building it. But our routine also took months in the making. We took 2 weeks to get used to going to daycare. He went for half day last week but our getting there routine is gone. We are back to work/daycare tomorrow and I don’t know how our morning will go (let’s be honest, I never know, but I m even less sure now). We missed Illyana's vaccinations because we were in the hospital. Vaccinations have never bugged her, she’s always carried on with her life. This set has her with fever – is that the vaccinations, that she is run down or that it scared her more? I don’t know but fevers are not conducive to getting more calories in her as she doesn’t eat when she's not feeling well. Maybe the mot frustrating part is that I have been told to carry on with what I was doing. There is nothing medically wrong with her and physically, there is no reason why she doesn’t eat well. This means that there are no suggestions to offer us. The best suggestion is to cheer loudly every time she does something good eating. It is so unnatural and uncomfortable for me to do this. I get that she respond to social praise but it cant be the only way can it? I’m also supposed to eat the same thing as her so that she see me eating it and wants to eat it too. But shes on a high fat diet that I don’t want to be on. She doesn’t sleep so things like dishes don’t get done s much as I would like. I don’t want to cook two (or 3, depending on Nick’s diet)meals. I struggle to make meals as it is. Then I get told that all food is good food and I am a role model for my daughter in how I view food. Sure but adults don’t need the same fat and they wouldn’t be telling m it’s good foo. The whole give her straight fat is a bizarre concept to me. I feel so alone in this adventure. There is so much pressure to gain weight and eat enough food that I stress out when she doesn’t eat well. We are doing weekly weigh ins. What happens if she doesn’t gain appropriately? I still have so many professionals in my life but no one has any concrete suggestions for me. I have been trying g for 7 months, clearly it I not working! I get that it is me and Illyana the need to figure it out together, I just wish someone could help me. I feel like I’m failing. I feel like I’m failing Illyana. I need help but it I not something anyone can help with.

Milestones

Parenting is hard. I am 9 months in and still feel like I have no idea what I am doing. I question myself daily. Sometimes, the cause of my frustration is a lack of sleep and then Illyana is a goofball when I just want to get things done (diaper changes are the major cause of this - I want to clean her up and she wants to roll around and play). But other times, I think it is wondering if she is developing normally and if she's not, is it because of something I am doing or not doing.

Illyana sees a whack of professionals, including a pediatrician, physiotherapist, the infant development program, and is on the client list for the speech and language pathologist and the occupational therapist although she has, thankfully, not really required their services yet. She sees all of these people because she had a feeding issue at 3 months, which involved a hospitalization while they figured out exactly what was going on. We learned a lot in that visit and the follow ups which happened. It was a small thing that required more adjustments on my end than anything.

I appreciate all the help these professionals have given us but I sometimes think that they make things harder on me.

Illyana is slightly behind on her development. I don't think it is anything to worry about. She's so smart and active. She's just Illyana. I also know that all babies develop differently and at their own pace. Milestones and development trackers drive me crazy for this reason.

Every time we get vaccinations there is a checklist. At 2 months, she missed one of six items. At 4 months she missed a little more. At 6 months even more. At six months, we also completed the ages and stages questionnaire and Illyana only was low on her gross motor development which was expected with her feeding issues. But looking at the vaccination questionnaire, I couldn't help but feel like we were doing soemthing wrong.

Earlier this week, we did the 9 month questionnaire. Illyana was 8 months, 3 weeks. We were not doing well on it. I said "no" to a lot of questions before it was suggested we do the 8 month test. We did much better on that scale but had two new areas come up that Illyana is "behind" on.

The thing is, if we didn't have all these professionals around, we would still think our baby is the perfect little girl she is. Instead, I look at these checklists and wonder what I am doing wrong. Should I be doing more with her? Should I be teaching her things I am not? I follow her lead, I play with her. I wonder if there is something "wrong" with her.

I know in my heart that she is just Illyana and I see her as the perfect little girl she is. I see a goofball with a big personality. I see a strong willed little girl who will take the world by storm. I see a little girl, determined to army crawl as fast as she can around the whole house. And I know she is perfect. But she falls into the "needs monitoring" category in two of five or six categories, and in new categories from where she has previously been "behind".

I also struggle with the professionals giving me suggestions on how to be with her, how to help her. Sometimes it feels like they are saying why is she doing this? What are you doing to make her like this? Which is maybe what I want to hear since I often feel like I am failing her anyways.... its hard to have professionals involved. It's hard to see the checklist saying she's behind and then hear (even if only internally) that it is something you are doing.

I know these questions have been asked since the beginning of time and I know that anyone reading this will say that Illyana is fine, I'm doing a great job and all that. And I know all those things. But when a child is not meeting milestones for any reason, it becomes extra hard to smile. Illyana is days away from her 9 month birthday and there are things on the 3-6 month checklist that I cannot say she does. I don't know how to make it better for her.

Sometimes, I want to walk away from the professionals so that I can just enjoy my perfect baby girl but I know that they are important in case we reach more critical levels. I would rather her be seen and monitored, and early intervention applied if needed than not be seen, or be on waitlist for years. It's just so hard, seeing her not meeting the milestones on a piece of paper.

Parenting is hard. I feel like a failure but she looks at me with such love. I see the milestone checklists and we work on the things we are missing. But she is perfect, in every way and I wouldn't change her for anything.

Life is a Juggling Act

Long time, my blog.  I need somewhere to talk about life: raising my family and growing up, so I am back!


This weekend Nick picked up 2 overtime shifts. This meant he worked 22 hours in 2 shifts and that he didn't have a weekend.

I found myself frustrated that we didnt share time together, that I was the only person awake with the baby. I was tired and wanted my husband's support. I wanted some alone time and it didn't happen. I felt frustrated that he chose work over his family.

But this goes both ways.

Nick was frustrated that I was annoyed he was working 2 overtime shifts. He will get paid for an entire extra week of work on those 2 days. The only money coming into this household comes from him working right now (that's what sharing EI does). He says it's a month of daycare paid for in one weekend of work. Its our groceries. Its Christmas dinner for the family and gifts for the family. It's important.

Both arguements are valid and important. It's not every weekend he works overtime and it's been a long time since he did a double overtime shift. I have asked him not to take double shifts for a while, that it is too hard on our family unit. He said ok. At this point, Illyana gets excited when he enters the room but doesn't wonder where he is when he's gone. Soon she will be used to the routine that she sees Daddy when we get up and before she goes to bed. When she is older we can explain that Daddy is at work (and Mommy will also be at work sometimes). But we both still miss him.

Life is a juggling act. Money is necessary for survival. Family is important for everything. As partners, we need to find a balance that works for us. I learned this weekend that him working 22 hours in his weekend doesnt work for me. But I also remembered that he didn't take the shifts because he didnt want to spend time with us. He knew that he was giving up his weekend, giving up time with Illyana and his wife.

This is life. It's beautiful, messy, and complicated. We make decisions in an instant and sometimes it's the wrong decision. We love, learn, change and grow. And hopefully next time we both make better choices. But at the end of the day, there is always love 

Systemic Reform Required

Our system (health, justice, social development, the whole deal) is failing us.  Today I write with a heavy heart.  Today I write in utter disbelief on what we have to deal with.  I write in frustration for the barriers that exist. 

My clientele are homeless or marginally housed.  They are low-income and many are unable to work, for a variety of reasons.  Many struggle with addictions.  Many struggle with disabling conditions of mental health.  Many struggle with both addiction and mental health.  Most have horrific stories that involve sexual abuse, physical abuse, mental abuse, neglect.  Many grew up in foster care.  Many of their families struggle with similar issues.  There are two and three generations of families that frequent our doors.  There are many clients who have diagnosed or undiagnosed physical or mental conditions, such as FASD, Autism, generalized intellectual delay or physical ailments. We have a handful of clients who are wheelchair bound, and more who require the aid of a cane to get around. Our clients are from multiple nationalities, including Aboriginal.  They are seen as less than human, “scum”, worthless members of society, wasting resources, undeserving of support and services, to describe just a few of the phrases I have heard them described as.

Many of my clients do not have a family doctor they can see about any ailments they have.  Many have recently been “fired” from their family doctor.   The stories coming from our guests is familiar: their long-term doctor retired and the new doctor decided they didn’t need their pain killers (it’s an addiction not really required).  These patients, in pain and suffering withdrawal from the powerful narcotics they have been using for many years, escalate and tell the doctor that they need their prescription. They are “fired” for escalating and most likely raising their voice in frustration. They are “fired” for being a junkie.  And within a month, these people take more drastic measures; normally looking like attempted suicide because they cannot live this life anymore.  We call 9-1-1 to help them.  In my experience, the first (and only) responders are the RCMP, who cuff the individual and maybe take them to the hospital but more likely take them to cells.

Without a family doctor, and unable to go into health establishments for “inappropriate behaviour”, our people are left only with the Emergency Room at the local hospital.  The experiences at the hospital have a similar ring to them as well.  “I waited for three hours for them to tell me I am a degenerate and unworthy of their attention.  I waited three hours for them to deny me services.  When I questioned them, stating I am in a need of medical attention, they tell me they will call the RCMP to have me removed”.  I hear things like “they told me my condition did not require medical attention, but I never saw the doctor”.  This happens to males and females, Aboriginal and non-Aboriginals.  It is more noteworthy when we have a guest who is actually seen at the hospital and not just sent away without receiving any care.

There is a distinct lack of services available to the people I serve.  The unit for psychiatric assessment and stabilization, which includes management of chemical withdrawal only has eight beds and the beds are normally full.  We have been told in the last couple of months that chemical withdrawal is no longer a treatment they can provide.  That means that there is nowhere in town that can offer detox services.  We have a centre called “Mental Health and Addiction Services”.  Our guests that have both mental health and addiction issues are turned away at both ends.  Mental health cannot treat them if they are actively using.  Addiction says that they psychosis they experience is not an addiction issue but a mental health issue.  (I do not see why the two teams cannot work together and help find a solution to the problem!).  Our guests also have their files closed at Mental Health and Addiction because they miss appointments.  I understand that the case loads are heavy, but having an understanding of mental health issues or addiction issues will tell you that appointments are hard for people to keep.  These clinicians make no effort to come to the client.  They then have to go through the entire intake process and wait for a clinician to be assigned to them, thus ruining any relationship they may have had with their previous worker.  It is a new thing every time, including telling their story over again to someone they do not know or trust.

We had a woman who had a heroin addiction, and was using heavily.  She knew she was in trouble.  She tried to get into the psychiatric treatment ward, whose mandate states the unit is “to provide psychiatric assessment and stabilization, including management of chemical withdrawal” but was told there were no beds.  She called the next town and put herself on the waiting list for the detoxification centre there.  She wasn’t sure how she would get there but knew she needed to help herself.  She overdosed several times, requiring the use of a defibrillator.  She showed up at the homeless shelter and asked us to clean the wound caused by one of the defibrillators.  The wound was infected (I did not see it but a nurse who works with us described it as the grossest thing she has ever seen).  We told this woman she needed to go to the hospital for treatment.  She said she couldn’t go there again, that she didn’t receive treatment in the past.  We sent a staff member with her and she had the wound cleaned and was given antibiotics.  The doctor at the hospital gave a referral for medical supplies so that she could clean and dress her chest wound herself (or, I guess, have the staff at the homeless shelter do it).  As she couldn’t afford to buy the supplies, she had to put in an application to the Ministry of Social Development for emergency medical supplies funding.  The hoops that had to be jumped through to keep this wound clean!  It was a good thing that we were there to help her because there were a lot of steps to getting funding to provide the supplies needed.  It wasn’t even a week after we learned of her infection that she passed away.

We had a man who had been living in his own place for about two months.  He came back to the shelter incredibly sick.  He was delusional and hallucinating.  He was weak and barely able to walk.  He was coughing up blood.  He said he had been to the hospital and they had run some tests.  He said he was supposed to come back in a week.  Our staff took action after a couple of days of him being sick and went to a doctor’s appointment with him.  The doctor told us he had pneumonia and gave us a prescription.  He continued to get worse.  Our janitorial staff reported there were pools of dried blood under his bed.  We took him to the hospital for more tests.  His EKG was way out of whack, his heart was not working properly.  It was our nurse who took him to the hospital.  She thought he would be admitted that day.  He wasn’t.  He was sent back to the homeless shelter.  That same night we had to call an ambulance for him.  He died two days later.

We have a young woman who wants to get help with her addiction.  I watched her struggle to say clean for a week while trying to get into treatment.  A staff member and her attended the hospital with the hopes of getting into the local detox and were turned away.  This young woman then called the next town and put herself on the waiting list for detox there.  She called them daily looking for a bed.  She wanted to get clean and knows she cannot do it on her own (and that we are not qualified or capable to help her in the current setting).  She waited all week.  Then the chance was gone for a while.  She has tried to check herself into the psychiatric ward at least another time since.  She came back to the shelter in tears.  She was called names and put down by the nurses at the hospital.  She was told that she had refused treatment last time she was in (she had waited several hours and had left because she had not seen a doctor yet) and that they weren’t going to waste their time with her again.  Defeated, she told me that she would never go to the hospital again because it wasn’t worth her dignity. 

We have a young man who was admitted into the psychiatric facility for a week.  When he was released from the facility, he came and talked to us about treatment options for himself.  He got himself accepted into a treatment facility in a different part of the province for young men.  He did everything on his own, with our encouragement and guidance.  He applied for extra money on top of his disability cheque to buy his bus ticket and the supplies he needs to attend this treatment program.  The Ministry of Social Development was happy to pay his bus ticket and his food/clothing allowance but balked at the intake fee required by the treatment centre.  It is a private treatment centre so they refused to pay the fee.  Frustrated, he told me he should just hang himself.  I encouraged him to hang on, to let us make some calls.  Our staff called the treatment centre, advocated for him, praised him for taking all the steps on his own, and the treatment centre agreed to take him without the intake fee.  This young man is over the moon happy that he is off to turn his life around.  This is my only success story today.

We have a young man, who struggles with drug induced psychosis (so no help from Mental Health and Addictions because he is the classic example of how the teams cannot work together to help him – is it addiction or is it mental health help he needs?).  When this young man is escalating, the only choice staff have if they are unable to calm him, is to call the RCMP on him and have him removed from our premises.  We try not to call the RCMP on him, as it is a breach of his trust in us as people who are on his side and want to help him, but sometimes it is for the safety of himself and our other guests that we have to make the call.  Last week this young man was called into the RCMP by a community member.  The RCMP were able to get him admitted into the psychiatric ward for 24 hours under the Mental Health Act.  When he returned to the shelter he was incredibly upset that staff would betray him like that.  We assured him that we did not make the call but he was unable to believe us.  Yesterday he assaulted a staff member while in a state of psychosis.  RCMP came and picked him up, and took him back the psychiatric facility.  He was turned away at the door.  RCMP told us that they could hold him for a couple hours but that they would have to release him.  Because he has put our staff safety at risk, he is being denied access to the only home he knows, the shelter.  We cannot allow him in as he is posing a safety risk to staff and other guests.  Our Executive Director is thinking we might have to charge him with assault so that he does jail time, as that is the only safe place for him right now.

This system is broken.  A mentally ill man, who is suffering right now, has been kicked out of the only place in town he is comfortable at all.  He has nowhere else to go.  We are the only shelter.  He does not have healthy family to live with. He is unwell and is unable to maintain his own house.  The psychiatric ward will not admit him.  Mental Health and Addiction say he is not their problem.  Our only option is to have him thrown in jail!  That is the last place we want him to be.  It breaks all of our hearts to have that decision made for us.

It is not the first, and it will not be the last time our guests have to do jail time because of their addiction.  Are there treatment options while they are in jail?  If he does his time can he not get the help he needs while there?  It doesn’t seem to be that way.  Our guests return clean.  Within a couple days they are back into their addiction.  I realize our facility does not help these guests to stay clean as there are so many addicted people around that it can be easy to fall back into the lifestyle. 

We need somewhere where people with addictions can go when they are ready to make a change.  It needs to be immediate access.  At least once a month a client tells us that they are tired of their lifestyle and want to make a change. They tell us that they are heading to the hospital to check themselves into the psychiatric unit.  About three hours later, they return, frustrated, defeated, and often having used their substance of choice quite heavily.  When they get turned away they feel like they may as well enjoy their substance because they can’t get off it on their own anyways.  We had a man who wanted to go to detox.  By the time we were able to get him a bed in detox, and even drove him to the centre, he didn’t want to go.  He was back in town the next day.  I asked him what happened.  He told me “I wanted to go on Tuesday.  By Friday, I didn’t want to go, so I came back”.  When someone wants to make a change in their lives there needs to be immediate access.  People need to be treated with dignity and respect.  They don’t need to be told they are wasting resources.  They don’t need to be called names.  My clients are as entitled to proper medical care as you and I.  I know that the one day I visited the same Emergency Room as my guests do, I waited three hours, but I saw a doctor, he was patient and he did his job.  I expect the same treatment for my clients.  My issue was probably less pressing than the issues my clients show up with, because I know for most of them, previous treatment tells them they will be treated poorly and they only go if they absolutely have to.

It is not okay.  The system is not okay.  Our guests are discriminated against from every angle.  They are on social assistance (and half the world thinks they should be drug tested to receive any money to live on).  Social assistance does not pay enough to live on.  They are addicts and have mental health issues, which is something that scares the general population. (I will admit that before I knew anything about mental health or addiction, it scared me a little too).  Society looks on our guests with disdain.  In conversations we hear a lot of “them vs us” – those people do blah, blah, blah.  Our guests are ignored when they go places, or treated rudely and threatened with RCMP.  In the six months I have worked at the shelter, our people have been told they cannot hang out here but over there.  This changes the next month and they get kicked further away.  Currently, they are allowed to gather on a sandbank on the river.  I am waiting for an accident where one of our guests falls into the river.  We are looking for a new facility as ours is beyond repair.  We have a location in mind, but our neighbours, Mental Health and Addiction do not think we are good neighbours.  Wouldn’t it be interesting if Mental Health and Addiction could see what we see in our guests, and be close enough to make meeting the client easier for the client?  I did not expect resistance from agencies I see as on our side, our partners.  Our guests have stories that will break your heart if you are willing to listen.  Our guests deserve the same treatment you and I expect.  I am so frustrated for them.  The system is broken and our guests suffer the most.

Career Contemplation

I have a dilemma.  It’s not really a dilemma, but it is to me.  I don’t know what I want to do.

I did my practicum with MCFD.  It was a good practicum, I liked my co-workers and was liked in return.  They had nothing bad to say about me.  All things you want in a practicum or any employment opportunity.  However, I remain unsure that child protection is something I want to do.  Now I am looking for work and have two MCFD jobs where I have made or will make the short list and have a good chance of getting on.  But I remain unsure if I want them.  I have a lot of reasons, I am just not sure they add up to enough. 

Reason 1.  I love volunteering.  In many ways, this is reasons 2, 3 and maybe 4 as well.  I need to connect with my community, since I am planning to stay here long term.  I want to get re-involved with Girl Guides and even sent the email in last night to see how I could volunteer.  I also need to make my own friends in the community.  Nick’s friends are great and we all get along, but they are Nick’s friends and I want my own.  I have always struggled with making friends, and volunteering has provided many of my closest friends.  The problem is that I see Girl Guides and MCFD as a conflict.  It is technically not, and many people at MCFD are involved in children’s lives outside of work.  I also know that work should not dictate how I live my life (although MCFD does ask certain things, which I totally understand).  My problem is that I don’t think parents can easily separate Jenna the Child Protection Worker from Jenna the Guide leader.  I think that some parents might pull their child from my unit, and there is not a lot of other options in a small community.  I think that parents will think that I am always judging them.  I don’t think people understand that every adult in this province is legally obligated to report child abuse.  I don’t want the girls to suffer because of my career choice.  The other problem I see is when a child in my unit becomes involved with the ministry.  Obviously she cannot fall on my caseload, but does it cause extra stress on the family that MCFD is in their lives in many ways.  What if I join a unit and there is a child already involved with MCFD.  I have talked to many people about this, and wrote it up as an ethical dilemma as part of my practicum.  I have had a discussion with my friends on Facebook about it.  I have had a discussion with one of my team leaders at MCFD.  My social work friends say that it is not a problem at all.  My friends that are parents (and not social workers) say that it comes down to my ability to separate my job from my volunteer.  I think it doesn’t matter if I am able to, it comes down to what parents are able to do.  My Team Leader told me that she originally tried to stay on volunteering but found that she felt it was a conflict in the end and had to stop her volunteer activities to keep her career.  She is the only person that has seen where I am coming from on this.  Nick tries to understand, but he doesn’t see the conflict I feel.  I think I have decided that I cannot work for MCFD and volunteer in the community.   This is a personal choice, or problem or whatever it is, but I just feel uncomfortable doing both.  Without volunteering in the community, I don’t know where else I am going to meet people and make new friends.  MCFD gained a reputation as baby snatchers (they have changed their practices now but reputations tend to remain) and I feel that people are not going to want to be friends with someone that can take their child at any time.  I know a friend of mine thinks that I judge her parenting and is just waiting for me to betray her.  She openly told me this.  I can only imagine how other parents feel about MCFD involvement in their lives.  And it is just that, I will always be MCFD.  I know co-workers at MCFD told me that their extended family always tell their kids (joking or not) that they have to behave when their aunt is there because she can take them away at any time.  I am not sure I want to start my time in the community “hated” by parents.

Reason 2 (or is it 5?).  The best part about social work, is working with people.  MCFD doesn’t provide any direct services to people – they use community agencies to provide services.  It is community agencies that work with the parents to improve their skills, work with children to gain a routine.  The role of an MCFD social worker is to ensure the child is safe and refer to community agencies.  We interview children but do not become a part of their lives in any way.  I LOVED working at the house in Kamloops because I was working directly with the people.  Yes, there were chores and things I didn’t like so much, but I loved taking the people to their activities and being a part of their lives.  When I interviewed for that Team Lead position for adults with disabilities, I kept thinking to myself, I don’t want to be the team leader, I want to be the community inclusion worker.  I guess I want to feel like I am making a difference in someone’s life, and I want to feel important.  I fear that with MCFD, I will feel more defeated than important.  Yes, I know that is a very selfish answer. 

As part of this reason, I am pretty sure I will be offered a casual position with the Emergency Shelter.  They basically told me I had it as long as my references checked out.  This would start as casual, and involve graveyard shifts. They hinted that there may be positions available in the near future though.  I started in Kamloops as casual and had a position before I finished my training hours.  This job works directly with the population it serves.  Meals are prepared for the people, beds are provided.  Workers get to know the individuals and what works for them.  MCFD workers have such a heavy caseload that they never get to spend the time getting to know the people they are helping.  In this way, taking the Shelter job and seeing where it goes appeals to me a lot more.  But I have also heard that some people get only a shift a month working there, and that is not going to work for me at all.  In our discussion yesterday, it came up that people who got on at MCFD found working at the shelter afterwards to be a conflict and had to quit the shelter.  The Shelter offers lots of trainings to their staff, many of which can be applied to many areas of life, such as Suicide Prevention, Mental Health First Aid etc.  MCFD obviously has a lot of training too, but it is less transferable in my opinion.  However, I have heard that people who have worked at MCFD (and even just done their practicum there) are highly employable because the training at MCFD is so good.

There are of course, reasons that MCFD is a better choice.  Both of the current positions offer benefits and vacation (one job pays both out as it is only part time).  The Ministry is one of the highest paying jobs in social work.  I know that I could stay for many years and am not going to lose my job because funding gets cut or something dumb.  The Ministry can always use more employees, but there has been a hiring freeze in the part.  Nick likes the Ministry because it is stable and safer.  He worries about me working with homeless and addicts.  He thinks I will become too attached and get hurt if they relapse.  He has a point, but I think social workers get hurt in any job.  You can become too attached to a client at MCFD as well.  It’s part of being a social worker to find out your boundaries and enforce them.

I am still working towards my FASD Support Worker Diploma.  A better paying job will help me pay that tuition easier than a casual job.  If I am working full time and doing a course, I might not have time for volunteering anyways.  I have signed up to take a course starting at the end of September and plan on taking on in the spring semester as well.  The ministry is typically a two year commitment (unless you don’t pass your probation), which gets me much further in my schooling.  But I had kind of decided to forego the “good job” in order to make friends.

I know that I do not have any of these jobs yet.   But I just don’t feel like I will be happy at the ministry.  In my practicum, I came home tired every night and half the week didn’t want to go to work.  I know that the student role and the employee role are different and I will have more to do.  I will have my own caseload and get to make decisions instead of doing paper work for other people.  And if I get the job where doing paperwork for other people is my role, at least I know ahead of time what that entails!

I cried when talking to Nick about what to do earlier today. I don’t think it was a “the ministry will make me cry” cry but more that the ministry might take away other chances to make friends and I am lonely cry.  I am not that lonely, I don’t do people well at the best of times, but this week I am feeling lonely and I want something to do that forces me out of the house.  I know a job will help with that as well but I just feel like I need my own life and don’t know the best way to go about finding it.  I know that soon Nick’s fall activities will start and he will be home less often again.  I want to have things to do as well!

I guess I know I need to go ahead with the process for both MCFD jobs, and see what happens with the shelter as well.  I just feel so conflicted about getting an MCFD job, whereas I think that any other social work job would not cause the same torment inside me.  I have never really been in a situation where I could pick and choose what jobs I got (and I am not there yet, but there is a lot of thought about it!).  I don’t know what my dream job might be.  I don’t know what I want to do with this social work degree, but I know it was the right degree for me.  I haven’t said it in a while, but I felt like I fit in for the first time in my life when I entered the BSW program.  I found people who think the same way, who feel the same way.  Part of me wants to explore more social work options – that is another reason why the shelter is appealing right now – it is something new that I get to try.  A new population with things I have never experienced.  But can a girl who has been sober her entire life help an addict?

I also know a lot of my issues boil down to a lack of self-esteem and confidence.  This is a problem I have always struggled with.  It is clearly not getting better now!

This was mostly a rant to get my thoughts a little sorted, but opinions are always welcome!