A Different Christmas and a Positive New Year

November 2013

As the year drew to a close, I found myself having to adjust alot.  Not just to being a parent of 2 children on a permanent basis but to caring for a child with additional needs.  In-spite of my previous experience in childcare, I found parenting a child with additional needs is more challenging than I had ever expected.  However, it wasn't simply Molly's behaviour that I found challenging - or the exhaustion - whether physical or emotional.  The thing I found most challenging about parenting Molly was the reactions of other people.   I loved her unconditionally and, although exhausted at the time, I had a bond with her that went beyond anything that behaviour could affect.  This did not make it any easier when she struggled in public and lashed out at another child or had a tantrum spurred on by her inability to manage routine changes or new experiences.  I knew that it was not appropriate to go around saying 'the reason she is behaving this way is because she has............' Yet everything in me wanted to shift the responsibility for her behaviour and, what may seem to an outsider, my lack of dealing with it appropriately.

I recorded the following in my blog: 

A pen, a car or an item of food are thrown across a table, across a room or at an innocent bystander; hair is pulled; another child is hit and my reaction is to guide, rather than chastise.  Of course I give a firm 'no' and try to remove from the situation if appropriate but more rigid behavioural management strategies such as time out could be seen as rejection; physical restraint may be retaliated to; rewards are not understood and understanding/sustained interest is not sufficient enough to withdraw privilages. There are times when it feels like nothing works and having to leave them to cry it out on the floor seems like the only thing to do.  And then the moment passes and they calm down. You calmly explain 'we don't hit/throw/pull hair we need gentle hands' and the world is a calmer place.  Until it all begins again. And again. And again.

The looks that we are given - the tuts, the sighs and the stares cut deep and, on a difficult day, can make me feel incapable. So I often find myself leaving before things escalate again.  We gradually build up the length of time we can stay at places. I explain to trusted people that we may not be able to stay for long, that we may need to make a quick exit and apologise for being 'not all there'.  

Anything can trigger this cycle...a new room layout, unfamiliar sounds, unfamiliar faces, an unexpected visitor, an inability to find a certain toy, a new structure.....all of these things need to be addressed and the exposure to them needs to be increased gradually but it is a slow process.

Each day I would bring Molly home and I would know that, as challenging caring for a child with additional needs could be, it was also incredibly rewarding.  I would hold her and she would snuggle in to me, resting her head on my shoulder and draping her arms around me.  I would be reminded of how far she had come - from the child who did not show any affection and went stiff each time she was picked up - not wanting to be held or cuddled.  Not even a year ago she had been unable to trust us and did not engage well with people and by the end of the year, in-spite of the behavioural problems we were experiencing, she was like a different child.  I loved to hear people mention how far she had come and I loved to see her interacting well with our friends and their children.  I loved to see her being part of a community and BELONGING.

I went on the write:

The most special, challenging, rewarding thing I have ever done is parent a child with additional needs. The journey is exhausting and is a constant learning process but, as a family of a child with additional needs, we are learning and growing together and are working out the best way to handle the situations we are in.  We are learning that additional needs are just that: additional.  Added extras. Different personality traits and a different way of thinking and being.  We are learning to be flexible and find our own ways to embrace additional needs.

December 2013

Christmas arrived and I felt excited about the season for the first time since Emilie had died.  The seasonal reminders still evoked a tight chest and feelings of sorrow and pain but I was able to enjoy aspects of it as well.  I was able to watch Sam and Molly get excited by seeing decorations and taking part in family traditions that we were beginning.  Molly was fascinated by the Christmas tree and, with real support from us, was even able to visit Father Christmas!  We were able to give her a normal experience.  I spent the months leading up to Christmas making decorations, planning food and putting together gift boxes for friends and family.  I acquired a new found joy for buying Christmas presents and reveled in the excitement of being able to share them.

We woke up on Christmas morning and were potentially as excited as the children, if not more.  We shared stockings together and went for a morning walk.  I was mildly surprised, however, to realise that the familiar pain was still there; the aching in my chest and the distant ringing in my ears, but I was more able to control it and was looking forward to hosting a big family Christmas Day with all the trimmings - something I had't imagined I'd ever have the strength to do again.  Watching the children tear open their presents and play with them throughout the day was an incredibly special experience and something I will always treasure; our first Christmas as a family of four.

I waited for the lull between Christmas and New Year to arrive, for the depression of knowing that we were starting yet another year leading a different life to that which we had planned to arrive.  However, we were surprised at how fresh we were feeling.  Boxing day was difficult but not due to grief; both children had become very overtired on Christmas Day and when the excitement wore off for them they struggled with challenging behaviour.  Even this felt completely normal and we were thankful to be able to have a quiet day to recover - to feel like a normal family.

As New Year approached we went down to Essex to stay with two different sets of friends - James and Katie, with whom we had spent the Christmas after Emilie's death, and Tom and Lindsey.  Being with great friends gave us all a focus.  Sam and Molly loved seeing James and Katie's children and loved spending time with Tom and Lindsey.  We loved seeing our friends and ending the new year with them.  It felt symbolic - the first time since Emilie's death that we had looked forward to the start of a new year and the first time that we had felt able to truly celebrate.  The inexorible passing of time still caused us immense pain; other people's lives had moved on along the path that they had planned - that they had expected - and ours had halted drastically in September 2011 forcing us to live a nightmare and remain in a state of limbo.  For the first time since this nightmare, I felt like our lives were moving forward too.

It was at this time that John and I spoke more seriously about the implications of Molly remaining with us as a permanent foster placement.  This would mean that she would be 'floating in the care system' - a term used my social services.  Our Independent Reviewing Officer (IRO) had expressed concerns about this and warned us that when Molly's care plan was reviewed, social services would want a more concrete plan for Molly's future due to her young age.  She warned us that we may run into problems with Molly remaining in permanent foster care.  She asked us to consider more legal options such as Special Guardianship Order.  John and I spoke about this in depth and wondered - if she were to remain in our care permanently and legally under SGO, how would our rights be different to those of adoptive parents and how would she feel in the future still not sharing our name.  The more we spoke about it the more it became clear in our minds that something needed to change.

And so I picked up the phone and called our social worker.......my voice shaking, I took a deep breath and tried to stay calm and rational.

"John and I have been talking about Molly's care plan", I said, "In-fact we've talked of nothing else".  Our social worker waited patiently whilst I tried hard to get my words out.

"We would like to request to adopt Molly".