Friday, May 25, 2012

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.


Tuesday, May 22, 2012

in laws

I was married for 5 years and never met my in laws. They sent a few gifts from Pakistan, and I once talked to my father in law on the phone, but that was it.

Then, after the divorce I managed to date more immigrants who also did not have family in Canada and never had to meet any parents.

I didn't miss it.

Now after five months with Steve I had to meet his mother and her boyfriend. Wow, what an undue stress that is!  It's like applying for a job - put your best foot forward so the mother likes you!

Really, all the parents should do is make sure their son/daughter is happy and are being treated well. Maybe not even that much - we are supposed to be adults and make our own choices. I don't know if i will ever like anyone my daughters bring home, I can openly admit that.

Lucky for me, I seem to have a niche for talking to seniors. Steve's mom was quite shy but her partner was not, so he and I did quite a lot of chatting about old people stuff.  I definitely won him over, I knew that in minutes.

And so the verdict came in tonight from Steve's mom. She likes me, and thinks I will be good to him and treat him well. That's all a mother ever wants I guess.  Someone to be good to her boy. I knew, as a mother myself, she was very observant of how I treated him and I wondered if that would be me in 30 years evaluating the partners my daughters have chosen.  It seems almost primal to me, almost instinctual.  It was a mini awakening for me, and I am grateful for the experience.

hear me roar.

I want my child to be offered the service and help that she desperately needs.  She is not coping at an age appropriate level, she is not emotionally 'well'.  I have been with her since she was 2 hours old, and she has never experienced trauma (minus the prenatal stuff) or abuse.

I finally got her in to see a child psychiatrist for her moods, and impulsiveness.  I KNOW there's more to her than just prenatal exposure, and perhaps ADHD.  It was a hard fight, but I advocated and got my young girl in to see a very busy child psychiatrist.

NO I do not want my child to have a psychiatric illness.  I'm really hoping she doesn't, but I know how she behaves and how she cries, that there is something else there.  If my child can FEEL better, I'm going to try to help her. The way she cries when "low" is so painful to hear. It is as though her parent has died.  It breaks my heart everytime she cries like that....not a normal cry.... a painful, deep seeded, empty, desperate cry.

After explaining all Sedona's symptoms to the psychiatrist, he implies all her issues are related to her prenatal exposure.  No way; 100% not the case in my opinion.  It's not normal, even for prenatally exposed kids, to have this many rages, this many tears, this much aggression.  and then to be laughing your head off 30 seconds later.  I've parented my kids with the expectation that they are full blown FASD (just found out they are not), but even so, NONE of the fasd literature says anything about mood swings this severe. 

So then the psychiatrist starts to tell me about how I just wasn't parenting her right. I needed to provide more structure, more activities for her to do, keep her busy.  What....the.....heck?????????????????
Activities?  Seriously, lets think about this.  My girls have every toy known to man and they have good toys because their grandmother is a play therapist and knows what to buy.  They have bikes, scooters, a sandbox, a pool, a mini tramp, a wagon, TWO playgrounds (one in front and one in back), access to a trampoline/outdoor pool at grandparents, are in gymnastics, daycare, YOGA, will be taking dancing soon.  This is just the stuff from home, and doesn't include the playground trips, trips to wildlife parks, trips to vancouver, camping etc.

Getting my child a label only has ONE benefit.  She MIGHT be able to get some help to control her emotions a bit better which will in turn help her development expand.  It will help me understand her better, and it will help her have a better quality of life.

Don't dare come after this very protective mama bear and tell her she just needs to parent better.  No flipping way.  I'm dedicated, intelligent, strong and know how to advocate.  I'm a great parent and I have great girls.  

Thursday, May 3, 2012

an ugly skeleton....

I haven't written much about my own issues, partly because it's easier to write about other's issues :).  I am also in a bit of denial about things, which has allowed me to live a fairly stable life these past few years, although I am certainly aware that I do have issues.

These issues I am referring to are in relation to being hit by a car when crossing the road in 2006. I've talked about it briefly before.  I don't like to focus too much on the accident, and my troubles because I believe in some ways that gives it more power, and at this point in my life, that accident has a lot of power over me. Unsettled lawsuits, mediation, court dates, 'independent medical exams' - there is a wealth of professionals out there who know more about me than I know about me.  I'm really pissed off about that to be honest.  The guy who hit me doesn't have to go through this, but I do, despite clear evidence I have problems as a result of the accident.

Anyways, as of late, I'm beginning to realize how my PTSD (post traumatic stress disorder) from the accident is affecting me.  For years, I walked around in a constant state of adrenaline because I was unaware I even had the condition, and even after diagnosis, no one treated me.  I had no idea how important it was to get treatment or really even understood the condition.  Even being a social worker, and having thought I knew what PTSD was, I still had the assumption it was only about having 'flashbacks' or 'disassociating'.  Nope, not the case I've come to find out.

About a year ago I began to realize the impact PTSD was having on my daily life. I was irritable, snapping at people (VERY unlike me), constantly anxious, jumpy, depressed, unable to sleep, kept people at a distance. I got treatment from both the doctor (yes there is medication for PTSD) and therapy from a good psychologist.  I made a ton of progress and how it affected my daily life was lessened.

But as with all skeletons in your closet, they come out to haunt you when you least expect it.   I've been too naive.  I never thought it would affect my relationship with my new partner, but it is.  Since the accident I've not been in a serious relationship with a man - I've dated a lot, but focused my energy on raising my daughters.  I've never had to juggle raising my daughters, dealing with my own issues, having a romantic relationship, and having PTSD.

I find how the PTSD rears its ugly head is not in terms of me distancing myself from him or anything like you would expect from someone with the disorder.  It comes out in a way that I feel really insecure about the relationship, and get almost needy.  That's really hard for me to admit because I like to consider myself independent and not in need of a man.  I've been through a lot (even prior to the accident) and have made a life for myself without the help of any man. I've adopted and raised two little girls all by myself.  Those are pretty big things, that require a confident person.  So why, when I am stressed or worried about something completely different, do I think that Steve is about to jump ship on me?

It is a completely irrational fear and I know it, but at those times I don't FEEL it. Steve is very compassionate, understanding, intelligent and patient.  He absolutely adores me, and has said I am the person he has been waiting for his entire life.  When he says that, I believe him and I believe he says it with all his being.

So yesterday, when feeling highly stressed and anxious about a completely different issue, I started to get all needy on him.  I didn't even realize I was being needy, or able to say "i need extra attention from you right now".  I was just kinda being a bitch in a way. Then some unknown force made me say "this feels unsafe for me".  This, being the relationship, was feeling unsafe.  Steve didn't do anything to make it that way, and we have been having a wonderful time lately. Then with more talking, the unknown force, made me realize what was really going on.  All this insecurity was coming from the PTSD and the fact I had not dealt with the stress/anxiety of the day in an appropriate manner.

I believe the 'unknown force' was my spirit guide Catherine.  If you believe at all in spirit guides, I can tell you she is an elderly woman, with long grey hair who has a very gentle but persistent personality.  She's kind of like a grandmother who nags me in a nice way. I've been meditating a lot lately and communicating with her and when I have these realizations where I don't even know where they come from, they are usually from her. So thank you Catherine. And, the reason I write this is because I think the more open you can be about things that bother you, and put it out into the universe, the easier it is to deal with our human reality. Namaste.