We all struggle sometimes

In life there are struggles, no one is going to deny that, some are not so difficult and some – some challenge you to the brink and back.  Most people can muddle through without any big issues and others well when we struggle – we hit a wall and we hit it hard.  It can feel like the world is crumbling down on us and we are trying to hold it all together.

Some people can take a step back and regroup ok, some of us require more time and others well we retreat into ourselves, hide from the world even if it means that some of those around us get upset or hurt at our actions.  It’s a defense mechanism – when things get to overwhelming and crazy we tend to hide from it until we are better able to process the feelings and situation.  We are kind of knee jerk reaction people more often than not, we go all in without a second thought.  I guess you could say when we commit to something we really commit – the good, bad and ugly – we are in it up to our eyes.  Problem being is that once we realize just how far into something we have gotten we look like deer in the headlights.  We quickly withdraw into our own little cocoon’s so to speak where we feel comfortable and secure and slowly we begin to try and make sense of things.

Sometimes it means regressions, sometimes aggressions, sometimes we stop talking much and seem distant and moody.  We struggle to hold onto things while trying to make sense of the rest of it.  Think of a Kangaroo and her Joey in her pouch – when the world is crazy and the little guy is scared he hides out in Mom’s pouch while he calms down and tries to make sense of the big noisy busy world.  He feels safe, secure and like nothing can hurt him.  It may mean he doesn’t learn things as quickly as the others or that he forgets some things his Mom has taught him already but none of that matters right then – what matters is he feels safe and the world isn’t so crazy in there.

Kids and adults a like on the spectrum tend to retreat or withdraw into their safe place when things become to much.  It could be a bunch of little things like being stuck inside due to weather more than you are used to, or dropping something and then spilling something else later and then a bunch of other things that have built up over a bit of time come spilling out in one big messy emotional waterfall and we just shut down.

We will often push people we care about a lot away one minute and the next we are upset that we did and want them back near us for support.  We tend to be yo-yo’s with our emotions like we are all teenage girls feeling devastated by our first heartbreak.  We feel angry, hurt, sad and frustrated – it’s just a big messy pile of jumbled emotions all running through our mind and hearts at once.  Truth be told we don’t really know what we want exactly and as someone on the outside looking in I am sure it feels like it’s just a lot of drama over nothing.

While we can be dramatic – it’s not always a struggle to cause drama we often are just overwhelmed by life, the social interactions, the always trying to keep up “appearances”, always trying to navigate a world where not much is what it seems, where people don’t always say what the mean or mean what they say.  Try processing all that on a minute by minute basis and wondering if you over thought it or under thought it.  Wishing the world would just bloody well make sense for once so you could just catch a break.

Sometimes we just need to retreat and find our calm happy place so we can proceed forward again when we are better able to cope.  Just try to understand and be there when we need someone…we will come around just give us a bit of time to work through whatever it is that is bothering us.

Navigating services feels more like a hostage negotiation

As a parent of two girls on the spectrum I often feel that trying to get them any kind of help is much more complicated than it needs to be.  Those with money can afford private services – but even that is hard to navigate.  People apply and don’t show, people show up and then do one or two shifts and never call or show up again.  You end up on so many wait lists and navigating so many things that you feel like there are more directions than there are ways to get there.

I sometimes feel like we need to be hostage negotiators and quite often we are also the hostages trying to negotiate our own release so to speak.  Kids need support – as parents we can help them but we to need to step back and be parents and not their speech therapist, their OT and PT etc.  Our lives are already busy and stressful and at some point in the day we need to step back and decompress just as much as they do.

In this household it’s even more essential that I can get that time in for me.  Between the Aspergers, Anxiety and all the medical issues I have and then Kevin’s PDD-NOS and his other health issues and the kids ASD and ADHD and two of them with Diabetes I never get to just relax.  Now I do prefer to manage their medical issues myself because I know what is needed when it is needed and how things have to be done.

I had to take it upon myself to help Kiana last year when the services we were getting were not helping her make much progress.  From September to June they tried to get her toilet trained with our help, they tried to get her to take her jacket and shoes/boots off and to be more safe outside when crossing the road etc (still working on that from time to time) and one step directions.  But we managed to get her toilet trained day/night and road trips before September, we managed to get her to cooperate for the most part when going out and she knows the routine for the mornings and she has been sleeping through the night and going to bed at decent times – all the things they could not accomplish with us – we did it without them.  But again it has it’s challenges because I am the parent.

I know I managed to get by in life all these years without therapy I managed to do what I could to get by in school but it wasn’t easy and I still struggle.  I want better than that for my kids – they don’t need to struggle so badly when there is help available to them.  I just wish the “system” that is there to help the kids, and us as parents didn’t hold us hostage.  I just need to catch a break somehow because this Aspie and Mom is just burning out real quickly.  It’s not ok to make the kids suffer and us parents more stressed than need be.  There needs to be a better way to do things for everyone involved.