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.