Missing piece

As a social worker I am always looking at the 'bigger picture'. I notice what services various non profit agencies offer, observe how clients interact with the service, and think about the outcome of the service.  I don't know why, it's kind of a hobby.  Like my geek boyfriend is really interested in music and the radio industry....

Anyways, the past 5 years have been a serious eye opener for me.  I left the 'field' of social work for medical reasons, but also during that time was able to become a parent at the same time.  We all know the girls are special needs.

I've been a very good advocate for my girls. My goal has always been to give them a great headstart in order to counter affect some of the effects of the prenatal exposure they had.  I've had them followed by professionals since birth, I've taken workshops, I've joined online communities for parent support, I've attended parent support groups in town.

What is missing for our kids?  Yes, special needs kids, whatever their disability is, need help. They might need physio,  OT, counselling, medications, 1:1 workers, etc.  Yes, our kids might have labels of autism, FASD, ADHD, ODD, Conduct, depression, or anxiety.

But what does that mean for the parent?

For me, it means I am always having to supervise my girls when they are home.  150%.  Never can I say "go play in your bedroom" and be relaxed.  I have to always be alert.  If something is too quiet, something bad is up.  Yes, normal kids do this, but 'our' kids do it 20 times worse.

For me it means humiliation when  my daughter cries, screams, kicks and yells at me when I pick her up from daycare.  And the daycare workers stare and state 'well she had a wonderful day HERE", as though you have such a bad home life.

For me it means keeping the child locks turned to on in the car because you never know when she is going to explode and possibly open the door as you drive.

For me it is feeling helpless when my daughter is raging, throwing things around, with glazed eyes.  How can I stop it?  I can I keep my OWN emotions under control?  What about the little sister and her needs when there's a 45 minute rage going on?

No professional talks about that.  No professional gives you practical help.  They might say "ok make sure your kid has dark curtains in her room so she can sleep better".  Do they come help put those curtains up because you are exhausted from your day to day life with your kids?  No. They want you to do visual scheduling....do they offer to make them up for you?  No.

Instead, as I was told last week, they say things like "well this is what it takes to parent a high needs child''.  Or as my key worker said "you seemed to exhausted and depressed for me to be able to work with you and the girls".

And when I hear of parents being told of the diagnosis' of their children, I always think of the grief for the PARENT involved in the diagnosis process.  There should be counselling offered for the PARENT when your child is diagnosed with a disability condition.  There never is and the 'supports' involved focus on helping the child only.

Just a rant. Maybe time for me to explore a new career path.