Sunday, September 29, 2013

Chapter Twenty-Three

In the spring of the year following Emma's surgery, I received a call from Janet , our adoption worker.

The two younger half sisters of Paul, Ben and Maya had been placed in an adoptive home in June of the previous year. Apparently, the parents in this adoptive family had run into a problem. There had already been a teenage boy in the family who was diagnosed with Autism, and he and one of the girls didn't get along. That particular one was the older of the two, she had been born with a serious heart condition and had the double whammy of having two developmentally delayed parents that contributed to her delays as well as delays caused by the heart problem. This girl was seriously delayed and the adoptive parents made the choice not to adopt her. Their Autistic son had some real difficulties being around her and kind of threatened the old 'it's either her or me' line and the couple decided that they couldn't handle a child which such serious delays.
Apparently, they asked the agency if they should also return the younger sister,( who didn't have any obvious delays) . The Children's Aid ( another division, not the one we worked with) decided in their infinite wisdom , that it would be okay if both girls were separated.

I would like to offer my opinion at this time and state that this was the worst mistake that I have ever seen an CAS agency make in the nineteen years that we were affiliated with them.

These girls had never been apart, they had always lived together since the youngest had been born.

At this time, they were 7 and 9 years old.

So, as I was saying, in that spring, we received a phone call from Janet. She inquired about Emma and when she was satisfied that life was back to normal she introduce the subject about which she had called. Paul, Ben and Maya's younger sister had come back into care....there had been what they call an adoption breakdown. The adoptive parents had decided they could parent this girl and she had come back in care....she had been with the adoptive parents for about six months. They chose, and they agency agreed, to keep the other sister, who was two years younger.

Since we had the other three, and since we had shown and interest in these girls, and since we were parenting Ben, who was also severely delayed....they thought we could parent Tamara. We thought long and hard about wasn't an easy decision...we knew nothing about her heart fact, the foster mother ( who was the same one that she had had before the first adoption) said to me...'why would you ever do this...she's either going to need a heart transplant or she's going to die before she's twenty, you know'.....she even said these words to one of our daughters,...this alarmed her so much that she voiced her opinion that we were foolish to consider this.

We had some visits with her...just Don and I, and then the whole family...the majority were in favour. In our naïveté we thought that if we could parent Ben then we could parent her. That was erroneous thinking on our part. We also knew, that at her age and medical problems that she would never be adopted. CAS only keeps children 'in care' for so long...18 tops...could we leave this child to be brought up in a institutional home the rest of her we give her a family? That kind of clinched it and we told Janet..'yes'.

Tamara came to live with us on her tenth birthday. She had only been with us a short time when she started pestering us for a new name, insisting that she hated Tamara....finally we gave in and named her Megan. She was thrilled, but unfortunately the CAS that she was from...was not. In fact they insisted that she be interviewed by a worker and a psychologist....they were convinced that it was our idea not hers. When these professionals handed in their report, CAS was not pleased. They said that Megan had made it clear that this was her new life and she wanted a new name . The agency wasn't impressed but her name was changed from Tamara to Megan Joy Tamara.
In fact, we heard that after our case, this agency implemented a new rule that adoptive parents weren't allowed to change their potential children's names!

Parenting Megan has turned out to be the hardest parenting job I've ever had.

Her delays were significant....Ben was at a nine year old level ...Megan was at a 3-4 year level. She hadn't had any proper stimulation for the first decade of her life, except for school. A lot of neglect had occurred, unfortunately too much to try and make up. It was an impossible task.
Other things, like her teeth had been neglected...even though she was taken to Sick Kids hospital and sedated for any work to be done, they had done nothing to adjust the teeth to the size of her mouth. Both Ben and Megan had very small mouths,...Ben's pediadontist had gradually removed secondary teeth to make room for the ones he needed and so there would be room for everything. To this day, Ben has beautiful teeth...lovely and straight and without any problems. Megan had far too many teeth in her mouth and when I took her to the pediadontist , he examined her mouth and turned to me and said, ' I'm so sorry, Mrs. W........., it's too late, there's nothing I can do'....four years later, braces were put on to straighten out the mess that could have easily been avoided if they had been given the proper attention sooner.

Megan was ten years old but could do absolutely nothing for herself...she couldn't cut her own food, she insisted that the only sandwich she could eat was peanut butter and jam. She had difficulty dressing herself...buttons and zippers presented a challenge. Personal hygiene was a problem ...she couldn't wash her face, brush her teeth or her hair. Everything had to be done for was criminal that this child had been in foster care for three years and never been taught how to do these basic tasks.

She also cried frequently, with little provocation. One of the things she constantly cried about was her younger sister and the people that almost adopted her.....she had no idea why she wasn't with them, she pined for them daily.

The former foster mother declared that she was the only one that could handle and take care of Megan. She insisted that Megan would be back, that I would give up...after all, she said....'why would you adopt her , she's just going to die early anyways if she doesn't get a heart transplant'......

This was a lot to contend with but we took it one day at a time.....I had to work with her as you would a 2 and 3 year old. Every day was a challenge, and eight years later, it still is.

Now, she can look after basic hygiene , dress herself, looks after her own food, does her own laundry, does basic chores around the house, loading and unloading the dishwasher, setting the table, taking her turn cleaning the bathroom that she shares with Ben and Maya, sweeping the basement stairs, making her bed......she makes her own lunch the night before school...( and it's not just P&J), she gets herself up in the morning with her alarm, gets ready for school, packs her bag and gets her own breakfast.

I think she's come a long way...but there are still some basic stuff that she can't do....for instance, she can tie her shoe laces but can not tie something around her waist, she can wash her own hair but quite often forgets to wash all the hair and forgets anything that is hanging down (so, only the hair on her scalp gets washed) , she'll dress inappropriately for the weather...puts shorts on when it's 8 degrees , just because the sun is shining .

Emotionally she is confused......she is eighteen and as her teacher says...'boy crazy' ....but if one guy doesn't work out then she shrugs her shoulders and immediately grasps another victim to smother her attentions on.....she may want a boyfriend but has no idea what that relationship entails.

She has always wanted to have her own baby! Of course, with her comprehension level that would be impossible.....and since she is 'boy crazy' and can be talked into anything...we've had to take safety precautions and every three months she receives an injection to prevent pregnancy. We also have future doctor appointments to hopefully have a partial hysterectomy done, since she can't stay on this hormone forever. Her cardiologist has last stated that her heart could not withstand a pregnancy, so at least we have that on our side!

Since she was adopted late in her life, she really doesn't have the comprehension that this her forever home and family and when she gets upset or angry....she immediately declares that she is packing her bag and is convinced that a friends home would be the better place and that they would be happy to have her. There are days when I would cheerfully help her pack!

As for her heart, it's a fine dance. Megan can be somewhat of a hypochondriac. I have to be very careful what she knows about her heart and how I present it to her. If she really knew how fragile it was she probably wouldn't do anything but sit in a vegetative state! The truth is that her heart is tired...we are in the middle of transferring care from the adolescent cardiac department to the adult care. Time will tell what they will suggest. Every year she has a cardiac check up where she has to where a holter for 24 hours and perform an exercise test. She'll routinely have ECG and electrocardiograms, and blood work done. Recently they thought her thyroid was being affected so now they are watching that. I have to monitor her activities at school and home, and because I try to treat her normally, sometimes I have to stop other people from getting her to carry heavy things, or even shoveling snow!

It is unknown at this point what Megan's life span will be. The Fontan procedure that she had done as a baby was relatively new, about forty years old so that the others that have had it done are full adults and the data is still being gathered. The doctor said the heart is tired and whether a transplant would be required down the road, is anyone's guess.

One of the biggest problems we face as Megan's parents is our own age and mortality. The government has cut back on assisted housing for developmentally delayed adults and even though we're getting too old with health problems of our own, a place for Megan to live and to be helped , is non existent at this time.

It is a situation that weighs heavily on us.

This is also one of the reasons that we were able to convince our son Ben, who is Megan's half brother to have sterilization done. Even though Ben is a wee bit higher functioning then Megan, he could never parent a child. I knew from working with CAS, that if Ben married and had children that they would immediately be apprehended and put into the system. I also knew that, these offspring, since they would have two developmentally delayed adults, would also be delayed. It is not fair or right to bring more delayed children into the world that cannot be looked after properly and just causes a set up for abuse and neglect.

It's a sad reality, one that Don and I never dreamt that we'd face when we agreed to adopt Ben and Megan, but a reality it is, deal with it as best you can, one day at a time.

So, we have gone through everyone....all nine children.....the next and final chapter will look at where everyone is now.

~ Marie

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