5.05.2014

This afternoon at work I was talking to a fellow teacher when she asked me how Kaeden is doing.  This is one of those subjects in which I never quite know how to answer...in general, people want to hear only the good news, the common, "Oh, everything is great!"  However, knowing Kaeden's story and our family history a bit more intimately, many people in our community ask what I would assume to be sincerely.  And it's a difficult question, as I don't have a really good answer.

"He's doing pretty well at the moment,"  I answered.  "He's still in Wijchmaal and has started working at a farm one day a week.  He comes home days in the weekend and that seems to suit all of us best."

The teacher went on to ask how long he can remain in school, and in his home away from home, what his future plans are, etc...and then hit me with some news.

In the paper today was an article about a 21-year-old autistic young man with aggressive tendencies whom lives in the village next to ours.  He also attended Kaeden's school and lived in Kaeden's home away from home.  However, he is now 21, and this demands that his living premises change.  At the age of 21, you no longer qualify to live in Kaeden's home away from home.  And, unfortunately, there is a HUGE waiting list for available resources for these 20-something "kids".  This particular young man's parents were shouting out for any type of assistance they could be offered.  After 13 years living away from home, none of them were able to see a successful future living together.  Yet, legally, it was the only manner.  As parents, we are legally responsible for our adult handicapped children.  Legally, they must have living arrangements.  Functionally, they can't live on their own.  So, what do we as parenst do?  When we have adult children who are aggressive, in addition to being used to living away from home, when they turn 21?  There is no help, no assistance.  We must fend for ourselves and out adult child.  And we start over once again...

I am scared for this coming future we try not to look towards.  I already know that IF Kaeden would come home to live, it would end in disaster...serious disaster...like, death of maiming injury.  It sounds a bit farfetched, but it isn't.  I know, in my heart of hearts, something very bad would come out of this scenario.  But, what other options do we have?

I am frightened of the future.  I try not to let it dominate my here and now, but the truth is that the niggling worry already flls my mind from time to time.  How can it not.  We have 2 years...two years...in which to figure out how to make living possible for all of us, without housing options.  This autism stuff just doesn't get any easier...

3.31.2014

A Year Past

Wow, almost a year gone by and here I am, looking back over the past of my life, our life.  I can't believe all the things I have missed sharing...but it is what it is...time for the here and now.

Today, the sun is shining and it's warm and beautiful outside.  Papa is feeling a little under the weather but headed off to work and mama woke up with a sore throat but isn't going to let it overpower me.  My boys, my future...you are both well.  Kaeden sent me numerous messages after I returned him to school, keeping in touch, keeping me updated on his life and times with friends at his home awaw from home.  Jari has exams today, French and more French, and tomorrow a last Nederlands exam before he's free for Easter vacation.

This weekend we took you guys to your big night at the VIP game in Genk.  It wasn't all you expected, but you both still enjoyed yourselves and I especially liked that it was such a memorable experience you could share together.  Mama and Papa went to dinner and a movie, which we haven't done for years.  A real date, just the two of us.  It was really nice knowing we had raised you guys and now had time for us, while you both could take care of yourselves to some degree.  It made me consider what our future will be...and made me proud of all of our accomplishments.

It's now lunchtime.  Jari, you are home from your tests saying they were easy and thinking you will have high scores.  That wouldn't be unusual for you, my little overachiever.  I only hope your desire to learn and be successful stay with you always, though I sometimes worry you put far too much pressure on yourself.  And Kaeden, thank you for a peaceful, easy weekend.  I know it is hard for you and takes lots of energy to make it okay for all of us, but seeing your glowing smile when Eef asked how everything went makes me know how badly you also benefit from happy weekends together.

So, that's the start after a year of absence.  The sun is shining and so is my heart.

6.04.2013

Health

Today I spent the morning at the hospital.  This time, it was just for control of the breast cancer scare early last year.  I did my tests (another day of getting poked all over trying to find a vein) and was told no results other than to speak with my doctor later in the week.  The good news is there was no biopsy this time around, so I am assuming everything looked okay.  But why do they let you worry for days if there is nothing wrong.  Why can't they say "Everything looks good.  You can make an appt with your doctor for followup advice."  Then at least you know the score, where you stand in the race.  So, Erwin made me an appt for Thursday and I'll hear what they have to say.  If there is time left over, I can discuss with my doc one of the MANY other issues I need to see her about.  This health stuff, it's driving me CRAZY!

I'm not entirely sure when it started but in the past couple years I have so many health issues it's starting to sincerely drive me crazy.  I mean, as in, one of the problems I want to discuss with my doctor is this weird feeling happening in my head.  I always feel as if I am living in a dream.  I forget things quickly and easily, and even simple little things seem very foggy, just as if you sort of remember a dream, bits and pieces of it, but it doesn't all fit together quite correctly.  It's actually a very scary feeling, and I am not sure if something is physically wrong with me or if the stress of life has finally caught up to me and I really am going crazy.  In any case, this is an issue I am somewhat scared to bring up.  I mean, I don't want a referal to a psych but I also don't want a brain surgeon...yet there is a real and definite problem and it is affecting MANY areas of my life, including my relationships with all my family members.  I am very easily angered and frustrated, and a large part of that has to do with not actually being able to be present due to this fogginess.  I take it out on my family because I truly cannot concentrate on more than one voice, sound or movemnet at a time...which isn't reality.  The headaches that come with this are extreme.

This is just one honorable mention in the list that I have made of health issues.  I am a 42 year old woman feeling like a demented 85 year old.  And as my mind fails me, so does my body.  It's just no fun!!  So, Thursday I have an appointment with my doctor.  I hope the news brings some sense of relief, and gives me an opening to walk out into the light once again, leaving the fog behind me, instead of surrounding.




5.31.2013

Back From Reprieve

Has it really been SOOOO long?  Yes, it has.  Far too long.  I think one culprit is Facebook and using that as a tool to status my life, but the other culprit has been me myself and I.  When one is unhappy, one finds difficulty in making words flow.  Yesterday I logged into my blogger account and reread some of my past posts.  I remembered why I started blogging; to document our lives, the good and the bad, a diary for my children to one day be able to again touch their childhood.  So, I decided that for me, as an outlet, this is necessary.  For my children, only a benefit in their future if they so choose to read our story.  Now, let it unfold.


I haven't been managing well in my life.  I have had numerous health issues hit me the past few years, and i think that coupled with all our other issues has sent me a bit over the edge.  When my knee surgery uncovered a serious arthritic issue last summer, I really started to feel older than my age.  When the shots quit helping and I was forced to use a crutch to walk, a piece of my spirit went with it.  I finally completed my series of gel shots last week which will hopefully give me back a sense of independence and health.  I still feel some pain and still walk a bity limpy, but it does seem to be helping and I actually took the stiars step by step like a normal person this week.  So, we're going to stay focussed on the positive and hope that I can walk comfortably enough to get into shape, as I have gained weight and lost self confidence throughout this process of being unable to walk.  Last week on our way to the doctor, I didn't have enough money in my wallet to cover the costs.  Oma was with Jari and I and Jari discovered she had €32 in her purse.  With the combined funds, we'd have enough to pay my docotr visit.  But, Jari wouldn't be able to have his coffee and pie day out with oma while they waited for me.  Jari said,"Yeah, but I would MUCH rather mama be able to walk again than I get a piece of pie.  So we should use the money for the doctor!"  I looked at my little boy and tears spileld over my cheeks.  Whatever we do wrong in parenting, it's also very obvious that Erwin and I are also doing some things right.  That child is caring, giving, and loving and I am so proud to be his mom.

This year marked the 18th birthday of Kaeden and with his birthday the title of adult.  It has been crazy trying to arrange everything for this next stage of his journey of life.  Last week we attended court to take away a primary right of our adult son.  It was a difficult step for me, knowing I was doing the right thing, yet wanting it, yet again, to be a different story.  Kaeden's financial matters now lie in my hands, with assistance from the judge.  It's just the beginning of taking over the care and the rights of our now adult son.  And it looks like a very long road ahead, especially emotionally.  As we fight for rights as his parents, we also fight for rights for him, all the while keeping his needs in the forefront.  I never knew what a journey I would be forced to take when I gave him life 18 years ago.  I wouldn't change that moment in time for anything, but I certainly feel as if my hopes and dreams for him have been forced into the black hole, never to return.  My dreams for him now include the hope for one day of ease when he comes home for the weekend.  One day we can all enjoy each other without problems.  One day in which he can manage to just "go with the flow".  One day where his eyes twinkle as he tells a story, rather than a darkness locking away his spirit somewhere deep inside.  Those moments keep me going, that twinkle is my hope.

Jari is ending his first phase of his schooling life.  Next year he attends middelbaar, the beginning of his secondary education.  It hasn't been easy, assisting him in discovering what choices are available and making a decision about his future.  I much prefer the Laramie Wyoming way where there is one school, you go there, get a general education and at 18 move onto college.  At 12, Jari has chosen to head off into the big world and attend sports school.  It means him traveling alone on the city bus system to reach his school.  It means extra hours of training, extra expenses, and extra work for all parties, as well as deserting all that is familiar inclusing his friends.  But he is certain and he is determined and he claims to be ready for this next adventure in his life.  I am so proud of him.  He is a good student with many friends, he is polite and becoming a bit more open towards others.  And he is a soccer player with a dream much bigger than he is.  This dream, I treasure it.  I watch him considering possibilities, I hear him discuss his future, and front and center lies his goal; to be a professional soccer player.  He has talent, his abilities are strong, but what a long road ahead to reach his dream.  I feel as if allowing him to attend sport school is allowing him to strive further towards this goal.  I worry about what it will do to him mentally, such a challenge with long hours and additional stress.  But I am excited to see how he handles the pressure, to watch him evolve and see what he will become.  It is with pleasure that I watch my little boy growing up and making a life for himself.

That is it for today.  A shortened version of life, everything in a nutshell.  What have I written?  A documentary of my children, the two beings that tug at my heart and while I gave them life, they have reciprocated by giving it back to me.  Along with my husband, we struggle through, trying to give to them while making our own lives meaningful as well.  Our sons, our boys, the central point of our lil family, and the only thing important in the whole scheme of life.


6.29.2012

We're at the halfway mark in this round with the psych hospital.  Halfway there...

Last night I went to visit my son.  Picked him up and took him out for an ice cream cone.  It is moments such as these that I so treasure with him.  Just him and I doing what any parent and child would/should do.  We walked through the door of the ice cream shop and another man was being served.  He had a huge cone with a ton of ice cream and whipped cream and cherries on top and it made Kaeden's mouth water.  "Mama, that is a big ice cream.  Can I have one of those?"  he asked.  I wanted to say yes, have whatever you want, but I also know that 1) he shouldn't have so much  2) this was a little treat, not something that should cost a days work and 3) he needs to know that I am in control, I have the final say.  "No, Kaeden, we came to get a little treat.  Look at all those flavors they have.  Which ONE would you like?  I'm going to have the lemon sorbet."

We ordered and sat out in the sunshine, the heat of the hottest day of the year thus far hanging onto us.  I asked him how he was doing, what they'd been doing in the group.  He responded with "Nothing."  So, I tried another tactic.  "I see you have a new bracelet.  Did you make that?"

And then the floodgates opened.  He started telling me about the crafts they had done, the outdoor games with water balloons, showed me the blister on his hand from tug of war.  He smiled and laughed and couldn't get it all out quickly enough.  I laughed with him, my smile meeting the smile in his own eyes.  This was what I wanted, what I needed.  Just a regular ole conversation of daily events of mother and son.

We sat there in the sun enjoying our time together.  "So, Kaeden, what flavor are you going to choose next time we come for a cone?"  I asked my boy, my young man.  "Are you going to get coconut again, or try something else?"  I could see the wheels turning as he tried to decide.  "That tasted just like a bounty," he answered.  "But maybe I want to try something else next time.  Maybe we can come enough times that I could try ALL the flavors!"  He looked at me with a smirk, but with light in his eyes, teasing me...

This was all I wanted, all I needed.  This game parents and children play.  This is reality.

6.08.2012

Where Is GOD?

Shades of blue come out from hiding
Behind the white clouded feathers in the sky
Somewhere up there, somewhere
God is looking down on me?

I touch the musty earth
Feel it rough upon my hand
The blades of green poking through
Grass , the world is a living being.

I take a step, and another
Waiting for His steps to match mine
Where is He when I need Him
Why doesn't He come down and carry me?

My belief is being tested
I kneel down and pray
But the sky doesn't open up
Instead tears fall over my face.

Faith is failing me, my faith
Where has it gone
Where is He?
God please help me.




Autism and Psychiatric Hospital

Today I have to find mental strength.  It seems so hard to do the past few months as I find myself sinking into some emotional pit of doom, unable to find even enough strength to do the required tasks of the day.  However, this is also a required task, and one of great importance.  But, it doesn't make it any easier to gear up for.

My son has been hospitalized in a psychiatric center for issues he is unable to control due to his autism.  He is no longer functioning in our world as his fear and struggles prevent him from managing on a day to day basis.  And it sounds like he's pulling mama along for the ride, as I am having the exact same issues, without the aggression and violence.

This afternoon we head once again for another meeting with his psychologist, our psychologist, to discuss the ups and downs of our life as a family with autism.  The ups come fewer and further between than the downs, and the worry from this has taken the livelihood from my eyes and replaced it with someone I don't even know.  I look at myself and wonder where the spirited, passionate mother and woman of long ago has gone.  What I see scares me.  I do not wish to be the woman behind those eyes.  She looks back with a defeated blank stare on her face.  She is not alive.  She cannot find happiness.

This is the second round of psychiatric hospitals for our family.  I have major doubts about what they can do to help.  All the time and energy and focus put into helping my child, and I really don't see the light at the end of the tunnel.  I can't fathom finding help for this child whom owns my heart as I think about his thoughts and actions and his manner of living.  And yet, something in me won't give up, won't quit searching, won't quit trying.  He deserves my full attention, my every breath to get him to a place of happiness and success in whatever his path through life takes.  He deserves my undying commitment.

But what he can't take from me, I have learned, is my own happiness and success.  He can't grab onto the gleam of pride and strength in my eyes and turn it into the woman I have allowed myself to become.  He can't take away my own life.  I have allowed that to happen through fault of my own, given in to the power it has over me, this autism thing.  I have allowed it to suffocate me.  I haven't been strong enough to overcome the pain and hurt and fear and worry and sadness.  This isn't about him, but about me.  This is me living with autism.  Not autism in my own head, but the outward effects of having an autistic child. I am at a place where I am no longer willing to give it the power I have in the past.  I want to stand with pride, find the twinkle of expression in my eyes, be one step above this living with autism thing.

Today I will go to the psychiatric hospital where my son is being kept for the coming 9 weeks.  I will go and tell them how autism is affecting me, my marriage, my family.  I will tell our psychologist what I need to beat autism, what I need to do to find my sanity and regain my lust for life.  I will tell her I want my husband to see the life in my eyes, be able to laugh with me again.  I will tell her that I want to be the best mother I can be for my little guy, to have energy to play.  That I want to do everything within my power to help my son find his place in life, but not give up myself in the process.  I will tell her all of this, and ask her opinion on what i need to do to achieve it.

I need mental strength.  I need to be alive.  I need to live, not with autism, but above it.



6.03.2012

Girlfriends

I smiled, I laughed, and then I cried.  Tears of acceptance through the raw emotion of truth.  She came to me, wrapped her arms around me, and the nervous laughter replaced the tears, until tears of her own began to fall, the reality of more raw emotion.

Girlfriends, those women in my life with whom I share intimate and personal stories, the women who dare not lie to me, but bring me freedom in telling the bitter truth, no matter how much it hurts.

My very best friend in life too far away to share the truth of my everyday existence, oh how I miss her.  It is in these moments that I recognize how very much distance does matter, how a phone call cannot bring me the same feeling of reality I crave from being within the same space, a personal space.  She can no longer wipe away my tears, encompass me in a hug, tell me it will all be okay in the truth of her glance into my eyes.  I miss her, my best friend.  I miss what we have shared, what brought me the joy of having a  best female friend, someone I have come to love more deeply than if I had been given the gift of a sister.  She is a treasure to me, but a treasure just a bit too far away to fully share in my world.  No less important, maybe even more so, but the miles between us are tangible.

I have made new friends, been given the gift of friendship yet again.  I have opened my heart, my past and my future, and shared stories of triumph and struggle.  She looked deep into my eyes as I spoke, a broken soul with a history being honest and sincere, and her eyes never left mine, bored into my soul, allowing me to grieve in a safe place.  She is my friend, a person with whom I can be me and through it all, it will be okay.

We spoke of our husbands, of my children, of our childhoods and of religion.  We talked about spirituality and what it means to us, about simple things like food we eat and clothes we like to wear.  We discussed secrets we have been unable to share before in our relationship, our friendship.  We reached another level of trust, I allowed her into my safe place inside, and she opened her heart to me.

We grabbed another cocktail concoction, green and blue, snacked on some goodies in bowls on the table, the lights dimmed low and music playing in the background.  And we shared this space, these treasured hours in time, deep into the morning hours as we yawned and our eyes became sleepy, and we felt friendship, safety, trust and security.  My girlfriend and I, this person I have chosen to allow into my life, this friend I chose to be mine, this person who has become my sister, my family.

I smiled, I laughed and then I cried.  And though it all, she was present, and I know she will always be so, a present in my life, my friend.