A different type of parenting

A special guest post:

I wrote this earlier this year as part of our parental views for the EHCP applications and wanted to share it with you in the hope it helps you feel understood...none of us are alone in this even though it can sometimes feel that way ❤️

Parenting children who have special needs requires an almost super human love, where our expectations as parents are set aside and the needs of our children met first. Unless you have the privilege of raising a child with special needs, you simply can’t understand. Their daily struggle and yours is brutal. It is impossible to imagine the work and exhaustion of exhibiting patience, discipline and love while your child shows you extremely challenging behaviour day after day without any hope of them ‘growing out of it’ or it being ‘a phase’.

Our wonderful children are not average children with standard needs. They are special children with special and specific needs.

Our children have become tools of refinement in our lives. They struggle. This means our family struggles. There are marital arguments surrounding their little lives. Worry, anxiety and anger stem from their existence and secondary trauma is present in our home.

Love also comes in Tsunamis! Through the challenges it persists because love is a choice. We choose to love our children and raise them the best that we know how, but it doesn’t negate the pain that also marinates within.

It is hard to understand what it is like to ache for your child to be ‘normal’ to want them to have real friendships. We always anticipated our home would be filled with lots of friends and lots of happy family gatherings, meals around the table filled with laughter. It’s so hard when you don’t see your child connecting with others and are forced to live in isolation and segregation.

Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. Wondering what you are doing wrong and why nothing is working.

Standard parenting strategies do not work with our children. Our children don’t respond to time out or to typical consequences and rewards do little to help improvement. New strategies are needed, and they are hard to discover and even harder to implement as a united front day after day. There is a lot of trial and error. Failed attempts; defeat is a reality. Yet determination and love persist.

Unless you are raising a child with special needs, you don’t know what it is like to yearn for ‘normal’.

You don’t know what it like to wish your child could cope with being at a birthday party or play date, brownies, football, ballet or a playgroup without causing destruction in their wake.

There is a longing to be able to go for the day out or for a meal without anticipating a meltdown. The crowds will be too much? They will get overwhelmed or over stimulated? They are going to lose it? We must try to remind each other that restraint trumps exasperation and their brains don’t process the like other children’s brains. Their behaviors are messages from their brains, which are totally beyond their control.

Unless you are raising a child with special needs, you don’t know what it’s like to try everything - huge efforts and sacrifices, constantly wondering will anything make a difference?

The endless appointments with Doctors, Therapists, Social Workers, and Specialists are daunting. Will anyone give us tools to help our children? Is the therapy making an impact? Do we have to medicate our child? The constant questions, which bombard us daily and remain unanswered, are a constant worry.

Whether your child has Attachment Disorder, ADHD, PDA, FASD, SPD, ASD or any other diagnosis, as a parent of a child with special needs you live in a constant state of hyper vigilance and anxiety, risk assessing every waking moment of every singe day in an attempt to keep everyone safe.

We constantly question whether we are too strict or not strict enough. Are we being as therapeutic as we can be, are we good enough for them?
We love them so much so we just keep going.

The public meltdowns are horrific and the looks of disapproval are heart breaking but we have got to the point that we don’t care what others think now (well most of the time!). They don’t understand the pressure you are under every single day raising a child with special needs.

It has changed us. It has changed our family. Honestly there are momentary desires to escape - of course we never would, but the day in and day out is overwhelming an often we wonder how we will we physically and mentally carry on doing this for the rest of our lives? Will we survive this as a family of four? The guilt these feelings bring is haunting and unless you are raising a child with special needs, you could not imagine the determination it takes to start all over again every day but amazingly each day it comes. We to choose kindness when we are filled with anger, joy when we are feeling defeated, and hope when we can’t see the light at the end of the tunnel.

It is our privilege to be raising two amazing humans. We will persist. Defeat isn’t an option. Hope abounds. Love will triumph.

We fully accept we cannot reverse the organic brain damage and the early life trauma our beautiful little girl, suffers due to maternal alcohol and drug use. We cannot change her genetic make up and the conditions which may have passed to her from the people who created her.

We also accept we cannot chance the huge Attachment trauma our amazing little boy endures and that makes the world such a difficult place for him. He is constantly in flight, flight and freeze modes. To watch our little boy overwhelmed by a need to be in control of everything and everyone at all times is devastating. At three years old when most children are really only thinking about themselves and their needs his little body is flooded with cortisol making him hyper vigilant and full of anxiety.

We can do all that is humanly possible to give them an environment in which they can grow and learn. An environment where they feel safe, valued and accepted. We cherish them and celebrate them - our very special children deserve nothing less.

Your kindness and acceptance goes an awfully long way so we want to say a huge thanks to our dearest friends and family the people who support us, accept us and love us just the way we are! 

Issey Davis

When is inclusion not inclusion?

When your child/young person with SEND who has struggled in the system starts a new setting, you have all the hope in the world that this time it will be different. To begin with it seems possible that you may have finally found the place that will genuinely understand inclusion.

For us, this was mainstream number four after four years of home ed. 

After attending a course specifically designed for home ed students for year 11, we decided that this was possibly the best chance for H at post 16 in mainstream.

H had to audition for the course she wanted to do in December of the year before she was due to start. At the audition she was told that the college would definitely offer her a place on a music course. With hindsight, that was the point at which it went wrong. The reason I think this is that from that point forward we should have requested transition plans would be made and transition started especially as H was already on campus 2 afternoons each week.

We got to spring and GCSE season took over, the music department was busy with their music festival which we visited one afternoon and enjoyed. We had meetings to discuss which level course would be appropriate and to review H's EHCP, still no transition plan was made.

At this point alarm bells should have rung for us, H was having a massive wobble about attending college but we assumed it was the stress of exams and the pressure that she was feeling.

It was agreed that the level 3 course would be most appropriate for H based on her musical ability. We looked at the syllabus online but didn’t get to speak to anyone about the expectations of the course.

Then we reached summer, there was an open day for new students but for some reason H didn’t get invited. We think that it was because she was registered as a student at college already but it was another missed opportunity to begin to familiarise H with the department she was due to join and the course she was due to start.

September arrived, H had passed her maths and English GCSE which was an incredible achievement. 

H was offered an induction day alongside all the other students. It was a full day but as soon as we told the staff that a full day would be too much the length day was reduced. Which was fine but it meant that H didn’t get access to all the information she needed. She was overwhelmed and stressed and couldn’t absorb anything that was said to her.

Then college started, H's timetable was reduced as a reasonable adjustment and if there were sessions that she couldn’t cope with she didn’t have to go but....

Is this inclusion? 

I have found myself asking this question many, many times over the past 4 weeks since H stopped attending college. Yes, after 4 weeks she stopped attending and there is no hope at all of her reintegrating.

Inclusion to me means making a course accessible to all students not offering a course and then simply expecting the students to fit in with the expectations. 

H had 1:1 learning support staff, they were not responsible for including her in the course, their role was to communicate for H when she was unable to and help her remove herself if she was feeling uncomfortable or stressed, to help her to move around college if she needed to and many other things but I don’t believe that it was their role to make the course accessible to H.

From the very first day H was put into a group and had to work on exactly the same topic as all the other students, she was following exactly the same programme as others, if there were things she couldn’t cope with she was allowed to skip them. But this is not inclusion, in fact, it is exclusion. By telling H she doesn’t have to do things she is effectively being excluded from parts of the course and from college life.

When things started to go wrong and I requested work for H to do at home nothing arrived, when I requested a meeting it became clear that the staff hadn’t met a student like H before and it was obvious to me that we had reached the end of the road with mainstream.

This is how it is, the course is the course and H either needs to fit in and cope with it or she doesn’t but if she can’t there is no alternative,  there is no plan B there is no inclusive version of the course that can be adapted for H so that she can attend and achieve.

I wonder if mainstream colleges can ever be truly inclusive?

There are courses that H could do with other disabled students but that isn’t inclusion, that is segregation!

Having a 1:1 to navigate the staff and the ups and downs of day to day is integration and is part of the way there but it's still not true inclusion.

Now we are looking at specialist colleges, can they be inclusive? I don’t know.

Maybe they can be inclusive in terms of developing a package that will support H to begin to build her confidence and trust in adults away from home. They maybe inclusive within themselves and that is brilliant, but H will still be excluded from mainstream, her disability has once again prevented her from accessing a mainstream setting and in my world that shows how far we still have to travel for our disabled children and young people!

Rachel Tenacious

A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15. We removed H from the education system in 2015 after she had what we now know as an autistic burn-out. The school system didn’t suit H at all but home ed has been amazing. Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.

           

June 2015 SEND Reforms Survey

The Communication Trust is committed to supporting all those working within the reformed SEND system to meet the needs of children and young people with SLCN and their families. As part of this work, they undertook two online surveys in June and November 2014 to find out how practitioners, service providers and commissioners were preparing for and implementing the SEND Reforms. They used the valuable information gained from these surveys to ensure we are able to offer relevant support to those working with children and young people with SLCN in the areas they report needing it most.
 

They are now running a third survey  across June 2015, to find out more about the perceived opportunities and remaining challenges of the reformed SEND system for children and young people with SLCN, almost a whole academic year on from the reforms coming into effect. The survey will take less than 10 minutes to complete and we would be extremely grateful if you would take the time to complete it and pass the link on to your colleagues and networks to help get the broadest response possible.
 

The survey will be open from 29th May - 29th June 2015 and is available here: www.surveymonkey.com/s/sendreformsforslcn2015.