Where was I?  Oh, yes....

So, after the long summer break I can assure you that I needed Sarah back at school.  The energy it takes to keep all my emotions hidden, all my tears from falling, from letting her see how tired, anxious and depressed I can be, is unbelievable.  It leaves me emotionally drained, and for some of you reading this it’s the same for you.  There will be some of you reading this who will question whether I should do this, I suspect you don’t have a kid on the spectrum.  But that’s a debate for another day. 

As the day to return grew nearer so did our anxiety levels.  Mine, Sarah’s and her dad’s.  Sarah does not like going to school, end of.  This is not a reflection on the school she is now attending I must add.  The reasons are complex.  But the fact remains, Sarah would prefer not to go to school.  And Sarah is not a passive child.  My gorgeous girl can unravel in seconds, she can literally explode and go off the richter scale and when she does she has absolutely no control over her actions.  And sadly sometimes that means she will hurt me or, worse,  herself.  So every morning I dance on eggshells.  I do the high energy positive routine.  I stick to it.  I have developed more “dealing with crisis strategies” than the last Government.  I can smell a change now and will use my bag of tricks to diffuse the situation, if I can.  But sometimes I can’t.  And then I will hear those all too familiar words “no thank you”  and I know that Sarah is going to refuse to get on that bus, she will unravel, I will try and hold it together and dodge the bullets.  But whatever the outcome I will be left emotionally battered and drained.  So you get the picture. 

In the week leading up to the school return I could not, here’s a surprise, put the rest of the world on hold.  I still had my job and all the other stresses of life to deal with.  I was literally sick with worry about what she’d do.  And....she got on the bus, she flapped her hands all the way there and for a split second she paused.  But Dot, the escort, just said “let’s go” closed the door and off they drove.  And I came inside, turned off the loud cartoons and sat down, and cried. 

 And cried, and cried.  Eight weeks of strawberry bleeding shortcake, watching my girl on holiday trying to get the other “typical” kids to play with her (and failing), my being “it” from the moment she woke to the moment she went to sleep and trying not to let her see that this breaks my heart, shreds my nerves and sends me spiraling towards darkness and depression, well you can only hold that in for so long. 

There is a point to all of this, quite apart from letting you see that my life is not all funny moments.  I am a strong person.  Friends will come to me for support.  We all need support.  I believe I am blessed in that regard.  I have always had a core group of people in my life (most pre-Sarah) who I trust completely, who love me good, bad or downright ugly.  They are my safe places.  In addition over the years, because of Sarah being different, I have met people who have literally changed my life, or who I feel I can tell the strangest things to - because they “get it”.  And those people sustain me, pick me up, dust me off and support me until I get my energy levels back up there. 

So if reading this triggers a response in you then you need to get some support too.  It may be you are not a support group type of person.  Given that you are reading a blog you obviously do internet.  There is support out there.  In Dumfries I personally recommend PIN www.parentsinclusionnetwork.org.uk  and PRTC http://www.carers.org/local-centre/dumfries .  For support in your area go to www.cafamily.org.uk,. Go to the Scotland page and you should find information on groups.  But better still phone them and ask about support in your region.  Or if you can’t face that, check if there is a parent volunteer in your area who you can call. (I am one of those volunteers and I promise not to weep!).  Go to Facebook, go online and join a forum http://www.specialkidsintheuk.org/ .   If you have a son or daughter with a rare disorder then Unique is the place for you www.rarechromo.org

Just find  yourself a safe place, somewhere you can offload when it’s not a day for tears of laughter.

I have asked myself whether I should in fact publish this blog as it is quite clear that the darkness I refer to is not just my mood or humour, but is in fact about depression in it’s many forms.  I know that I am allowing complete strangers to see parts of me which would typically remain private and this could leave me open to... what?  Ridicule (please, I was a Bay City Roller fan), insults (see above), derision (I’m an east end Glaswegian, I don’t do intimidated) or pity (I don’t do fluffy bunny either so don’t bother!).  No..the main reason we do not discuss this is because we are told in so many ways that we should not.

Well here’s the thing.  I don’t know the statistics on this one.  I know it costs three times more to raise a disabled child than a typical one.  I know that as a parent of a child with disability I am more likely to separate or divorce.  And I know, from common sense and from my experiences and those of my friends, that I am more likely to suffer from stress, anxiety or depression.  And that’s why I’ve chosen this blog today.  Because sometimes there really is a Darkness on the Edge of Town and you need to get some support, as I did, to make sure you don’t fall into it.

The good news is that those friends, my safe places, did pick me up and so the next blog should be a little less dark.  Oh and if you haven’t already figured it out, there will be a musical link in most of them.  Today it’s been a Springsteen “Darkness on the Edge of Town”,  followed by The Proclaimers “My Old Friend The Blues” which had to be followed byJackson Browne “Here come those tears again”.  Fortunately with a little support we moved to Jacob Golden “Shoulders”  and a bit of Carole King “You’ve got a friend”.  And if Strawberry does not go away then I fear it will be a dod of the Kaiser Chiefs predicting a riot. 

* Diffabilities - an expression used by Wendy Lawson.  www.mugsy.org/wendy/index.htm  She commented that she had diff- abilities (i.e. - different abilities) as opposed to disabilities.  I thought that was great.