Letters I never sent [01]

As we approach the end of 2014 and wait to find out what 2015 will bring us, Bringing Us Together wants to wish you all the very best for the New Year.

We were wondering how to end the year and we thought we would end it with a new project for 2015.  We wanted to talk about the Letter we never sent.  We all have them.  The letter we write, either in our head or on paper.  The letter you wish you could send but worry about repercussions.  My letters tend to be transcribed in my head, usually as I walk around the house silently ranting because the kids are nearby and I can’t say what I want to out loud.  When one of your children has echolalia, you learn the hard way that they will always choose the one word or phrase to repeat that you really wish they hadn’t.

We were chatting about these types of letters the other day and wanted to share with you some of the letters we wrote but never sent.

The letter I never sent

chaos-227971_640Dear Practitioner

You arrived at my home today and I forgot we had an appointment scheduled.  I did have three children under 3, all with special needs, so my life was rather chaotic to say the least.

As I had forgotten you were coming over, I hadn’t done my usual “make it look presentable by throwing everything in the cupboard under the stairs” routine so you really did get to see the chaos we were living in at that time.  Three small children involved cushions on floor, bits of survival blanket scattered randomly, probably a few chewed on pieces of toast, a large collection of matchbox cars in patterns that made sense to no one but my child (and God help anyone who moved a single one) and actually my hoover had just inhaled one of the beloved matchbox cars so it was in pieces as I tried to retrieve it for my distressed child.

Add to this, my husband was on a course and had been away for two days so I hadn’t been able to have a shower and as I wasn’t expecting company, I was in his football shirt and a rather fetching pair of leggings with holes in the behind – oh and underwear was absent too.

I hadn’t had any sleep as my children had played tag all night and kept me up (bless them, they still do this eight years on).  I don’t have any family nearby (my nearest family member is 80 miles away) and we had only moved into the area as I found out I was pregnant so we didn’t have a social network of support to help out.

You did offer to come back at a more suitable time but I bravely made the decision to say “No, come in, apologies for the mess but hey, at least you get to see what our lives are really like”

You arrived in a beautiful skirt and blouse without a single stain to be seen

You had a beautiful handbag that didn’t contain bottles, wet wipes, nappies, stained muslin cloths, appointment letters, leaflets and a variety of snacks.

You had make up on.

Your skin was flawless.

Your eyebrows were perfectly arched.

Your beautiful clean hair had been straightened and it had obviously taken you a few hours to get it looking so perfect.

Your hair colour was fresh and you had no roots on show.

You had nail varnish on your perfectly manicured finger nails.

You provided us with a lovely fresh scent as you walked into the room.

The one thing that really stood out for me though was that you had obviously slept and I don’t mean a ten minute nap, you looked refreshed and ready to take on the day.

You were me, before children.

As you perched cautiously on the edge of the sofa, I struggled to hold it together.  I was mortified to be seen in tatty clothes, with stains down my top, unwashed hair and basically everything I had always sworn I would never become.  I felt judged, probably by myself more than anyone else in the room but wow, it hurt.  I suddenly saw myself through someone else’s eyes and it really wasn’t a sight I was proud of.  I was the person who never went a day without full make up, I was the person who had my hair tinted every month on pay day, I was the person who always had clean clothes that actually co-ordinated.  How I had become this other person sat on this sofa?

As you talked away about what your service could provide, I couldn’t even remember what service you worked for, I just knew that I was in a bad place and everyone in the room pretending it was totally fine for my house and me to look like this was making this even more difficult.

And then you said those fateful words.

“I do understand what it’s like”

I remember those words hitting me, in the fog of the sad realisation that perhaps I wasn’t just stressed, I was depressed.

I remember seeing the fog turning into a red mist as I sat there thinking “Oh boy, you haven’t got a clue”  Yes, you may talk to families all day, you may have read a million text books but until you live this, you will never understand.  You can empathise with me but you cannot understand what it is like.

I can read biographies about people who were racially abused or dealt with homophobic abuse, I can talk to people about how they dealt with domestic abuse or what it was like to feed your child through a tube but I could not understand what it was really like to live through those experiences as I hadn’t been there myself.

You quickly realised that something was wrong and made the wise decision to call it a day and move on to your next appointment.   I held it together until you walked through the door and then I walked into my bathroom, sat on the floor and I cried and cried and cried.  I sobbed for the life I had had, I sobbed for the pain I felt at having to deal with so much, so quickly and so unexpectedly and I sobbed for a system that didn’t work for my children.  A system that made you jump through hoops and tick boxes just to get the support and help your child needs, and it is what they needed not just what they wanted.

I pulled myself together as I knew there will still three young children in the sitting room who needed me.  After organising their lunch and having the usual sensory battles that lunch time brought, I used the anger I felt towards you for truly believing you understood what my life was like to attack my house.  Dishwashers were loaded, clothes were put in the washing machine, cars were removed from hoovers, polish was brought out, bleach was put down loos, bathroom floors were washed and all the time I thought of incidents that had happened that wouldn’t be in my case notes, things that I wouldn’t always share with every practitioner, things I sometimes shared only with other mums of children with special needs and things that I sometimes wouldn’t share with anyone because it made me feel like a bad mum.

When my husband arrived home that evening, he looked amazed at the house and thankfully, he took one look at me and said “go and have a soak”.  Or perhaps he just took one smell of me and thought that was the best option for all of us.

As I soaked I continued to think of things that happen to us, the real things, the things that you just cannot know or understand unless you live this life.  I am grateful that so many good people do this for a living but living this is very different.  I don’t get holidays, I don’t finish at 5pm, I don’t get to sleep and I don’t get paid to do it.

That night, my husband took over the child duties and I dusted off my old laptop and put together a presentation (something the old me used to do all the time) and I created a video all about the real life we live.

This video has now been seen by thousands of people and I receive emails every week from parents and practitioners asking if they can use it in their training sessions.

So I thank you for making me angry, I thank you for making me realise that I needed to get myself together, I thank you for making me realise that I was depressed and not stressed so I could get the help I needed and I thank you for sparking the idea that made me produce the video.

I hope though that eight years on, you have started to realise that you don’t understand what it is like to live this life.  That would presume that we are all the same and we all deal with matters in the same way.  We don’t.  We are all individuals and we all deal with our stress, pain and frustration in different ways.  None of those ways is wrong or right, they are just what work for us.

So my final hope is that you continue to work with families, because you did leave my home that day and say to colleagues “this mum needs some help” and not “this mum is a bad mum”.  I hope you continue to know that we have a difficult time and that we need help.  I hope you don’t become so jaded by the system that you forget you are working with individuals and real people; we are not case studies.

My last hope is that you have seen the video or will watch it now and that you will take something away from it which will help another family down the line.

Yours sincerely

 

P.S.  Here is the video you inspired me to create.  Thank you.

 

Do you have a letter you never sent?  Send them to us and we’ll post them here.  Obviously there are libel and slander laws, so take out any identifying features (names, towns, etc) and go for it.

 

 

 

Mum to three great kids, each with a different SEN.
Transplanted from the NW to the SE.
Co-founder and Director of Bringing Us Together

Debs Aspland

Mum to three great kids, each with a different SEN. Transplanted from the NW to the SE. Co-founder and Director of Bringing Us Together

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1 Response

  1. January 11, 2015

    […] read on Bringing Us Together website, the letter that a mother had written but never sent to his practitioner (and a video that […]

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