Rear Window

In which the state intervenes in the parenting process,but fails to offer any sense of direction.

Advertisements

Imagine this. A bright room, full of children and toys. A one to one adult to child ratio. Music. Paint. Glitter. Lovely.

At the rear of the room a large mirror. I am sitting invisibly on the other side. It’s dark. There are a lot of other parents of various shapes and sizes I’ve never met before. I can see Pearl, she can’t see me. I can’t help her. I can’t touch her.

For an hour and a half adults neither I nor Pearl know, interact with her and the other children, in a variety of ways. They play, they question and touch her. They also occasionally share knowing glances with each other. I have 18 months of experience of what Pearl can or can’t do, and how best to help. I can see through the glass when she has not understood, even see when biscuits are being given out and Pearl is asked “Do you want a biscuit?”, “eh” (yes) the reply. She is asked again,replies again.The TA looks exasperated and asks again. Finally the Occupational Therapist who was looking at another child’s hand control intervenes  “Pearl said yes”.  A beat. “Well I can’t understand what she is saying”replies the TA-who disappears mysteriously in the weeks to come. I sit on the other side of the glass, invisible and shrinking into myself. The parents of children with Down’s Syndrome have formed a group, two other parents who have loud opinions on everything are holding forth in a corner. I am slowly reducing in size, wanting to pound the window, pound the TA’s head, feeling utterly disempowered.

This may sound to you, gentle reader, like a hellish dystopian future where the state judges, you, your child and your parenting. It is in fact The Child Development Centre.

As Pearl’s difficulties became more pronounced, and as the Professionals utterly failed to recognise what a beauty and genius she was, we had somehow accessed an open play session at the CDC. We arrived once a week to play with the children, have access to therapy services to ask questions, and chat.

It was fun. Pearl and I were speedily fast tracked into the CDC proper, which is where you find us. Fun and soft observational assessment were quickly replaced by standardised tests,sessions with all the therapists and a growing sense of desperation. I have since found out that the children who attended were thought to be the ‘worst’ in the county. The one redeeming feature for me was the presence of our amazing physio, who continued to provide appropriate exercises, useful suggestions, and spoke to me like an equal. Apart from this I’m not sure what the CDC was for. I had briefly thought that Pearl would receive the golden “early intervention”that would cure her and get her back on track to join her peers, but as the months went on this seemed less and less likely.

What did I gain from this early intervention then?  Well I found out about Disability Living Allowance. Although there were in session, two specialist TA’s a Special Needs Teacher, an Occupational Therapist, a Speech Therapist-the person who told me about this was a parent behind the mirror. I met a ridiculous continence nurse,  who came to give us everyday advise on potty training, and seemed peeved, when a few of us explained that we did not see it as a priority as our children could not walk, talk or sit up on a chair let alone a potty. Later it was another parent who told me that we would be eligible for nappies-not mentioned by the continence nurse. Nobody would advise me on what would happen to Pearl as far as nursery or school was concerned-because it was not their decision. In the end another rear window parent told me about a School for Parents  in the adjoining county, which Pearl eventually went to before being accepted into the attached school.

In a sense then I did learn something about Special Needs Parenting. Firstly that no one would tell you anything, that you would have to find out for yourself. That other Special Parents could offer incredible support and point you towards resources. That some parents operate a kind of reverse competitiveness “oh she sleeps through the night, lucky you, mine doesn’t sleep AND has fits AND is autistic AND has reflux AND… but she did start walking at 18 months so I expect yours will too” Avoid these parents at all costs. In retrospect I can see this was a coping mechanism, but never let someone else’s coping mechanism interfere with yours.  Just don’t. Hopefully these parents found their tribe. I found mine and met some parents whose coping mechanisms involved coffee, cake and dark humour. I also met our current Paediatrician who is just wonderful, got Pearl and us, and begins every report with “what a delight it was to see Pearl in clinic today”.

FullSizeRender-1

 

So Child Development Centre Professionals and your ilk, what would I say to you?

Don’t become overexcited by the assessment process and forget the child.

Don’t congratulate yourselves on providing “early intervention” if the parents don’t know the purpose or see the outcomes you are working towards.

Use your common sense about human interactions, introduce a group of parents to each other before putting them in a darkened room together, perhaps use this time to lead a group looking at resources or an introduction to Makaton.

Remember that in these early stages many parents will be in denial. Others will be overwhelmed. Do not assume that they will take everything in. Tell them your plans.Tell them again. Tell them again. Write it down. Put it in a handout.

Make sure your TA’s like children.

Explain to each parent why their child is in the group and what you hope to achieve. For example “because they are struggling in some areas we will assess and give you ideas to help at home. We aim to put together information that will form the basis of an individual plan to help them on the educational setting, we want to involve you every step of the way and help you decide what kind of a plan and setting would be most appropriate for your child”

Check that parents know all about support available, do they have a social worker? Do they receive  the relevant benefits? Are they accessing hydro therapy?  Do they have appropriate seating,  adaptations?  Do not EVER for one minute assume that these things are already in place.

Do not forget, DO NOT EVER FORGET, that parents can see EVERYTHING through that mirror. They can see if you are exasperated with their child, they can see if their child doesn’t like you. They can see and hear if you are talking over their child and ignoring them. Treat watching parents like you would an Ofsted inspector. Show them your working, planning and best practice, and then do it again the next week, and the week after that, and keep right on doing it. These parents are your partners.These children deserve it.

 

Author: pearliejqueen

Mother of Pearl and two others.Reluctant specialist in special needs parenting.Champion procrastinator,and escaper to the world of Vintage.

10 thoughts on “Rear Window”

  1. This makes my heart sink. Has nothing really changed in the 30 years since my daughter was at this stage? If the professionals learn nothing in 30 years something is badly wrong with the system. I think all of their training (or at least, 50+% of it) should be provided by parents.

    Liked by 2 people

    1. My heart sinks too.Most of the difficulties I have encountered are due to lack of communication.This is so easily rectified and it’s free!We did subsequently have help with seating from the OT and a statement,but they were not allowed to give us any pointers about school choices (because it’s the parents decision) which I think is ludicrous when they know what is available.The school we chose has been the making of Pearl-but the CDC didn’t know about it and weren’t sure when we chose it.Nice people(Apart from that TA!)poor planning,flawed system.And putting a group of people who don’t know each other in a dark room?Where else would you do that?!

      Like

      1. I remember sitting in the library thumbing through a directory of special schools, wondering how on earth I was supposed to know which ones would be appropriate for my daughter’s needs, and being told that no one official was allowed to give me any pointers or guidance on the subject. I was saved by a wonderful physio who rang me one day and said, “This is the school your daughter needs to go to, don’t look at any of the others, just push for this one,” and then added, “This conversation never took place.”

        Liked by 2 people

      2. Yes a locum speech Therapist did the same-I had doubts about the suitability of our local special school for Pearl,and she said-don’t send her there,it’s not for her,but I didn’t tell you that!)

        Liked by 2 people

  2. What a terrible experience. I feel very lucky to have had much better support – Portage in particular was brilliant and let me know about so much other stuff that I could access.

    Liked by 1 person

  3. For us, ‘Early Intervention’ just ticked a few boxes for a few people, nothing more, nothing of any worth at all…and, if I knew then what I know now, to be perfectly honest, I probably wouldn’t have bothered with many of the endless, hair-pulling, teeth grinding ‘appointments’. Btw, that’s not a recommendation by me for others to skip them though. Special Parents (the non competitive ones mostly, in my opinion) that I’ve come across have a wealth of knowledge and are happy to share and I’ve learned SO much from them, despite also being a professional. Saddened by the true reality of this post, for you and Pearl and for all of our precious children, but it needs to be said. Thanks SO much for writing this…as we say ‘Up North’, It’s a belter! Oh, and I also enjoy coffee and cake…and the occasional glass of prosecco – purely for medicinal purposes, obviously! 🙂

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s