Special schools for special kids?

I wanted to write this post because I have come across a few parents recently both in real life and on the internet who are in the process of deciding on a school for their special kids. I see fear in their eyes and hear it in their voices, and I know, I really know because I was there too, no so long ago. In a place where you have to make a decision with so very many unknowns, and such huge potential consequences.

There is so little known in the wider community about what special school are like on the inside, and I keep seeing that for those who don’t have children in special-Ed there seems to be a fear of these schools, at best that these school will hold our kids back or at worst an impression that they are like 19th century institutions.

Choosing the right school for any child is a tough decision, there are so many variables and unknowns, and every school and every child is different and has different needs. I admit that the idea of not sending Charlie to the same school as his sister was extremely painful for me. Last spring during a very well managed ‘transition’ we went to look at Charlie’s current school 5 times on the first 3 occasions I cried.

This wasn’t what I imagined our lives would look like, it wasn’t the dream I had of my kids being in the same school, with their wonderful little cousins, growing up together sharing experiences and teachers.

This wasn’t at all how I imagined things would turn out.

But, at some point I had to get beyond myself and my dreams and see that what was best for my kids, might not look like my dream.

There is a strong push to keep our special kids in mainstream education for as long as possible. Some children really are better off in mainstream education, in large classes, and busy lunch rooms, with lots of opportunities for interactions with lots of different people. And some schools can make inclusion work really well, others can’t and the kids suffer as a result. I’m often asked, couldn’t he cope in mainstream? I’m sure he could ‘cope’ but who wants to cope? school isn’t about coping its about living and learning and making friends and having fun.

For us, even though Charlie had enjoyed his time in mainstream nursery, I had to think long and hard about how much energy I had left in me to fight for help for him in school. How much energy did I have to be the one supporting the school and helping them to understand his needs. And so as painful as it was we took a leap into the unknown and accepted the place we had been offered in an assessment unit of a special school.

Charlie’s term dates are longer than Lillie’s, she is a little star, and on his first day, even though she wouldn’t be going back to school for a whole week, in a show of solidarity and to help him understand what was happening she got up and put her own school uniform on. We all took him and dropped him off for his first day at his new school.

Charlie had only been there a few days when the head called, to tell me that she was “interested in Charlie’s sensory processing disorder” and that she had organised for a local specialist OT to come into the school to train the whole staff on sensory processing! I cannot even put into words how different this felt. For years we had been in a place where even the special needs coordinator would tell me that because Charlie was well behaved and compliant had no difficulties. She once said ” you will never get a diagnosis” and would tell me that sensory processing disorder is not a recognised condition, that there were no funds for additional support even for children with a diagnosis of ASD or that other children needed it more.

This school is as different as night is from day, they have taken his sensory diet and are using it enthusiastically. They bought him a mini trampoline, out of school funds, to use in the classroom. They have agreed to give him protected lunch times where they will only offer his his safe foods, and one to one support with exploring new foods at other times.

Charlie has been in the assessment unit for 6 months now, it is managed by a special school and run just like one. The have small class sizes, and helpful friendly staff. I have to say that although hard accepting a place there was one of the best decisions we have ever made. Charlie is making great progress, both academically and socially he loves the school and he has lots of friends.

A few weeks ago I was struggling with something else, and to get out of myself I decided to write to Charlie’s school to thank them for everything that they have done to help and support I am sharing this letter, because I wanted to help anyone who is considering special ed to be a little less fearful about what the future may hold.

Dear staff

I just wanted to take a minute to write and say thank you so much for everything that you are doing to help and support our son. To let you know how happy he is at your school, and how this is having such a positive impact on our family.

Before we came to this school we had become accustomed to having to fight tooth and nail for every little tiny accommodation, we were given no extra support, and even the people who were supposed to be on our side would let us down failing to turn up for important meetings, not keeping to written agreements they had made with us and not returning phone calls. We often felt that nobody listened to our concerns or took them seriously. I know many many other parents who are still in having these kinds of problems and I have to say that the staff at this school make a very refreshing change to this situation.

Each member of staff that we have met has always treated us fairly, they have done their very best to listen to our concerns and help us. The staff are relaxed and competent, friendly and helpful. They always have time to stop and talk with the kids and parents. They never come across as defensive, too busy or uncaring. The children in the school reflect this positive attitude, and our son has made great progress in many areas of his development since joining you. He has become much more confident and his ability to communicate has improved significantly. It is a joy to hear him talk about “all his friends”. He loves going into school and I know that he feels safe and happy in there and he is learning lots of new things everyday.

We are grateful for the fact that the teachers and staff treat all of the children as individuals, and that even though there are children in the school with far greater needs than our son they never dismiss my concern’s or his needs as being insignificant. This is especially important to us because his disability is kind of hidden and not obvious when you first meet him and we are regularly faced with disbelieving uncaring attitudes. We want to say thank you for the efforts you have made to both understand and accommodate his sensory processing difficulties. For the training you organised for the staff, the equipment you have provided, and the extra support you have given him with his eating.

We are grateful to Mrs K who is supporting us in finding a suitable place for our son to continue his education when his time in the assessment’ unit comes to an end. We hope that when he does eventually move on at some point in the future that he will be as happy as he is here and will receive the same high quality care and teaching, although I have to say that this school will be a very hard act for any other school to follow. We want to say how we are both thankful and relieved that Mrs K helped us to finally see an educational psychologist, after 2 years of us banging on doors and getting no answer, having the report from the educational psychologist is like having a missing puzzle piece that we have been desperate to find.

We are also grateful to Mr D, Charlie’s teacher, for the love and care he shows the kids, for all the hard work and attention he put into their education. It is a delight to see how he engages with the children and how much they love him. It is great that Charlie has such a positive male role model during his early years education.

We have found this caring attitude from the school staff extends even outside of school hours. One night we were struggling to find ways to encourage Charlie to eat in Mcdonalds. When Mrs H one of the teachers from blue group arrived in the restaurant with her family, she very graciously took time out of her family meal to sit with Charlie and encourage him. It is hard to put into words how much something like this which may seem small, actually really matters.

Please be encouraged that you are doing a very important job and in our eyes you are doing it very well. Whilst we know that this is what you are paid to do we also know that positive attitudes, love, care and understanding are things that money cannot buy. Being part of this school is a huge blessing to our son and to our whole family.

Thanks Again

Sarah, Will, Lillie and Charlie

The endless battle of screen time

I have started trying to write this post on many occasions, and I keep getting stuck and it never gets finished, but today I am going to try again as its something that I have really been battling with over the last year, but I finally feel like the tide is turning.

I do feel like I am making some progress,  like I am beginning to win the never ending screen time war, and have finally managed to get to a point where the kids know I’m not joking when I tell them they have reached their limit and they have to turn it off.

Over the last few weeks we have finally established some very clear limits, and although the kids think I am being mean I know it will be well worth it in the end.

For a while they fought against it and complained that they were bored, my reply was “Great that’s exactly what I wanted, now go and play with your toys, or read your books, or use your imaginations, or draw or paint or make something.”

There is just so much more to do with your life and so much more to experience.

When I was a kid there was lots of time to be bored, which meant that there was also lots of time to be creative and generally get into trouble. If we were lucky there was about 1.5 hours a day of kids TV programming and Saturday morning TV was a major treat. But if you missed it you missed it and for most of the rest of the time there wasn’t really anything on TV to entertain kids. Although I do remember watching lots of documentaries and quiz shows with my dad. I loved QED and blue planet, and I think some of my love for science was born at that time.

There were also no other electronic screens to move onto when the TV was off. No computer, no phone, no ipad and very few trips to the cinema.

I can’t even imagine what it must be like to be a child with a brain that is developing now here in the 21st century when there is never ever the need to be bored. Our kids can literally be entertained 24 hours a day by a wide variety of electronic games, gadgets and screens, there is endless variety, and they are portable, in the car, in the church, in the shops there is literally nowhere where a child cannot sit and play with an electronic device.

For as long as I can remember I have been working deliberately to reduce (or more accurately to stem  the increase in) the hours that our kids spend using screens. It is super hard, I mean its like a never ending battle like shovelling snow in a blizzard and its one war that I never though I would be fighting. Over the last year since I have been reading more about sensory integration, and neuro-development it has become clear to me that no matter how hard this battle is it is one which I must keep on fighting.

Recently I met a mother who said that she had been told that because her son had autism that she should allow him to use the ipad whenever he wanted for as long as he wanted, because it was calming and a good way for him to zone out when the world became too stressful. Whilst I whole heartedly agree that this is a great reason to use an ipad, and it can be very helpful for when our kids need a distraction when things are stressful, I really couldn’t think of anything worse than completely unlimited use.

If I let my kids do this then they would literally spend all day every day attached to the device. They dont even have to come off it to eat or use the bathroom, I have even had requests from the to be able to watch films on it while they have a bath….Errm NO!

I have to say that the ipad has been a God send for us when Charlie cant cope with so much sensory input, a long noisy church service or a family meal in a restaurant, but to allow him to have unlimited use of it just seems like madness.

Often Charlie wakes up and literally the first words out of his mouth are “I haven’t had any screen time yet, can I have the ipad now?” I have heard lots of “it’s not fair” and “we are the only kids who cant have…” But they are slowly accepting the rules and things are changing some mornings now Charlie even wakes up and asks for toys.

When they get home from school they know that they can have only one hour on their choice of screen, and there are rules about having homework done first and no screens during meal times.

I was taking a call from my manager when they arrived home tonight and I was so proud of them when no one asked for a screen and this is how I found them when I finished the call. Their cousin was visiting and Lillie had even managed to offer to help her with her reading homework.

Honestly my heart nearly burst…

“Bring Grandma” Family-Centered care

‘Family-Centered care’ it sounds so simple and so obvious.

But why it is so often completely ignored and misunderstood by the system?

Maybe it’s because the system that we are caught up in wants to treat everyone as an individual, I don’t know.

But we don’t exist alone, we exist as families, live and work and play, hurt and suffer, win and lose as families.

The family unit is like the body of Christ described in 1 corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” If one member of the family is struggling with a hidden disability then every member of the family is affected in some way, it is impossible not to be.

The system seems say this…

“we will help your child in school, you will help your child at home”

Then it says is this…

“We will tell you what to do and you can do it on your own.”

and this

“There is no money for therapy, you are your child’s best therapist”

How can this be the best way to help? How can this be right?

I spent much of the first 4 years of Charlie’s life asking for professional help, for someone to recognise Charlie’s difficulties as real, for someone to step in and help and to be the professional. I had never heard of Family-Centered care, but I did my best to try to explain that that was what we, as a family desperately needed.

Everywhere I turned I was told NO, I was told that my expectations were unrealistic and that what I wanted was simply not available. I don’t easily take “no” for an answer but by this time last year, I was so incredibly frustrated, my heart was broken and I was exhausted from trying to get blood out of a stone. I hoped that getting a diagnosis would change this but honestly, as I found out much to my disappointment, it changed nothing.

But something did change, and Thank God it did because truly I was reaching breaking point.

This time last year when we were planning to meet an OT trained in sensory integration for the first time, she told me to “Bring Grandma”.

She felt that if Grandma had some time during the week when she was caring for Charlie then she should be involved in his therapy too. Radical – I know but so simple and logical, and having grandma there at that first meeting has paid massive dividends. Why? because Family centered care is so important, because families are important and because anyone who is not part of the solution can quickly become part of the problem.

Charlie’s ASD presents as “mild” or “high functioning” because of this we were told again and again by teachers and professionals that his difficulties were our fault. We were sent on parenting courses, told to discipline more, be stricter, even to starve him into eating.

If I could single out one way in which Sensory Integration Therapy impacted my life, it is that every single therapist I have ever met has treated me as part of the solution, not as part of the problem. It is so refreshing to spend time with someone who gets that your child’s difficulties are not caused by you.

In August, I read this in Lucy Jane Miller’s book Sensational Kids p61

Parents who are living with sensational children need support. They want confirmation that their children’s problems are real and difficult to live with and are not the parent’s fault. They yearn to hear that they are doing a good job and that their efforts on behalf of their children are important. Parents of children with visible handicaps get a lot of support. Parents who have a child with the “hidden handicap” of SPD need support too, but are likely to be met with stares and demeaning comments when their children act differently than other children. 

In family centered care, parents and therapists become partners who assume different but essential roles. The parents identify priorities and are the experts on their child; the therapists measure progress toward the established goals and are experts in therapeutic technique. Using a family centered model, parents and therapists together use a specializes way of thinking about everyday life in order to achieve the goals that reflect the family’s culture and values………………….

……………Just keep in mind that family centered treatment is the standard of care for intervention and is widely available. There is no reason to settle for less

When I read this I cried. There it was in writing, exactly what I needed, and exactly what I had been trying to describe to everyone for years. It had a name, and there was no reason to settle for less.

We are blessed, because our family is so supportive, and because we have finally found the family centered care we were looking for.

There are so many families, still struggling to get the help that they need from professionals who tell them that they should settle for less than the best, or worse that their parenting is the cause of their child’s difficulties.

There are also families where grandparents don’t get it, where relatives simply don’t understand, but how can they when they are not treated as part of the solution? 

Grandma made Charlie a lovely weighted blanket, which he uses every night, to sleep and can hide under when he needs to feel calm.

Then this happened, and this was awesome…

Just before Christmas my sister took the kids out for a walk and came back with Charlie sobbing crying. She said he had fallen over but was fine afterwards, then about 3 minutes later he started screaming for no apparent reason.

He kept saying that his neck hurt but there was no mark or scratch or sting.

Then we found this tiny little tiny twig in his hood.

Looks like it fell off a tree and landed in his hood, touching his neck on the way past.

Poor Charlie was so upset, I was sat holding him tight on the couch, trying to get in as much deep pressure as I could.

While my mum (Grandma) was looking for a heavy blanket to wrap him in I heard her say this to my sister…

“It must have brushed him lightly, and tickled or surprised him, The OT said don’t let things tickle him cos it will hurt him, if you are going to touch him do it firmly not very lightly because that won’t hurt him”

Knowledge is power and this is awesome, this is because Family-Centered care works, and no matter what you are told “there is no reason to settle for less”.

The Letter. Not getting enough help (part 2)

Back in May of this year 2 months after Charlie was diagnosed when I realised what the gaping hole was like after diagnosis. The big huge hole that is wanting for us, full of all the empty promises of help and support which we had heard over many years.

When it finally dawned on me that NO getting a diagnosis was not the key to finally getting the help we had been asking for since he was born. And no it was not the fault of all the professionals who had made the promises to us. I still to this day think that most of them genuinely believe that once you have a diagnosis you will automatically get some help or support. That something or someone will be there to catch you.

I had spoken to both Charlie’s paediatrician and Neighbourhood Early Years Service (NEYS) asking where the help and support was that we had been waiting for for so long and they had both begged me to complain, the problem was that I didn’t even know who to complain to.

In the end when I was at work one day, after having had a conversation with the paediatrician I completely lost it, I lost my calm, I lost my fight, I lost the mask i had been carrying around with me, I lost all pretence that everything was ok and I just broke down and cried.

I am blessed at work to have really great colleagues, these people, the volunteers and staff at the charity where I work are amongst my closest friends and my best support group. My manager is an amazing man and truly one of the best people I have ever had the privilege of working alongside, he is hardworking, sensible and compassionate. He is the kind of person who you can count on to come up with a fresh idea that is both helpful and useful. He suggested that I write to my MP and try to flag up to him how difficult the situation is.

So Instead of working that afternoon I sat at my work computer and banged out the letter below. I sent copies to my MP and also to anyone else I thought needed to know. The people who had been involved in the diagnosis process, the clinical commissioning group, healthwatch, and the people who had begged me to speak out the paediatrician and NEYS.

I have put a copy of the letter at the end of this blog.

Yesterday afternoon there was a market place type event on in liverpool football ground which was supposed to be for parents and carers of disabled children, the city council had put it on for people who provide services for children to give out information. They had obviously advertised it very poorly as once again, they were all really surprised that I was a parent! Apparently I was only the 4th parent they had seen all day.

Anyway I did my networking thing and I have managed to get hold of and speak to a woman called Sarah who is the commissioner for children’s services in liverpool city council. I told her how frustrated I was with how poor the services are and how annoyed I am that we still can’t access any help.

Sarah introduced me to the lady from NEYS, as soon as I said my name she knew who I was, she said “oh you’re the mum who wrote the letter that made everyone in our office cry!” She thanked me for writing the letter and told me that she was so sad that so little has changed since her own children were small. Her daughter is 22 and only just got a diagnosis and still struggles to access any help for her.

She gave me some numbers to call, and some more ideas on how to access help, she gave me a big hug and assured me that I was doing the right thing in the right way.

24/5/13

Dear Mr Twig

I am writing to you today, as one of your constituents to raise my concerns about the level of support and early intervention available in Liverpool to children who are diagnosed with Autistic spectrum disorder. ASD is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a neurological condition which is sometimes referred to as Autism or Asperger’s.

My son Charlie was diagnosed in March 2013 with ASD, the reason we were referred for diagnosis is that Charlie has had many problems with eating since birth. We have over the last 4 years been passed from pillar to post seeking help and early intervention for Charlie. We have attended many appointments and clinics, we have been given lots of advice which we have done our very best to implement  on each occasion we have asked for therapists to work directly with Charlie through play therapy/ occupational therapy / systemized desensitization however we have always been told that none of these therapies are available to us. We have attended parenting courses and support groups but we have never been able to access any direct help for Charlie.

Charlie was diagnosed at a panel meeting on 13/3/13, we were told of his diagnosis over the telephone, and a week later collected a letter from a speech therapist. We were not offered any support or counselling with the diagnosis. Whilst the speech therapist was very sweet, caring and concerned for our welfare I do not feel that she is the most suitably qualified person to deliver this kind of news to parents or that the best way to give such an important piece of information is in a telephone call. The diagnosis letter was extremely vague with very little in the way of advice or information included and nothing specifically related to eating. We were told that we would be contacted by the ASD pathway and that now we had a diagnosis we would be given more priority to access their training courses. The speech therapist later met with us to give us some information and advice she has found related to eating, but still no offer of any direct help for Charlie.

A month later we had still heard nothing from the ASD pathway, when I called them we were told that they had not received Charlie’s diagnosis letter, that they had no knowledge of Charlie and that his name was not on their database. I then contacted the speech therapy department myself to organise for the ASD pathway to have a copy of Charlie’s Diagnosis letter. When I spoke to Dr W Charlie’s paediatrician from Alder Hey (the children’s hospital) yesterday she was unaware of Charlie’s diagnosis, and did not have even his diagnosis letter in her file, I find it totally inappropriate that I should be telling my son’s paediatrician of his diagnosis and not the other way around.

We have in the last 2 weeks been contacted by the ASD pathway to inform us that the next available training courses for parents won’t start until September, more than a year since Charlie was referred. We were told that the courses are oversubscribed; we are not guaranteed a place on the course and that if we don’t call on the day that we are told about the course to book places then most likely they will all be gone and we will have to wait again. I asked the lady from the pathway about access to early intervention therapies for Charlie and she has told me that there are non-available.

The diagnosis letter stated that “A copy of the ASD Pathway information pack to be sent to the family” If such a pack exists we have still not received it, the only thing we have had from the pathway is a letter about their training courses, and a list of their drop in times.

We have asked the school which is a sure start Children’s Centre, to give Charlie support, however we are told that they do not have the resources to give him any additional help or support, he gets to spend only 5 minutes a day with 1:1 support the same as all of the other typically developing children in his class. As far as I can tell this is really not enough to make any noticeable difference for him. Charlie was placed in the nursery school with a play plan to help him with his eating and for the last 2 years he has made no progress in this area.

We are unclear as to how Charlie is developing educationally. We were lead to believe that it is standard procedure for a child to be assessed by an educational psychologist as part of the diagnosis process, however Charlie was not even seen by an educational psychologist as part of his diagnosis, and is not currently waiting to be seen which means that we have absolutely no idea where he is up to educationally or where we should best direct our limited resources to help him. Charlie’s diagnosis was made by a panel of people who had never even met him.

I feel so frustrated and let down by the way we have been treated, being passed around and referred from one person to another. That Charlie’s diagnosis was made without an educational psychologist’s assessment by people who have never spent any time with him, that we have to wait for such a long time before being offered training courses, and that administrative mistakes have caused us to wait even longer than is necessary; for example Charlie’s diagnosis not being sent to the ASD pathway or to his paediatrician. But the thing that is especially frustrating is that there are absolutely no services available for our son to access now that he has a diagnosis.

It is very clear from our personal research that early intervention and access to therapies such as occupational therapy, ABA therapy etc. is the best method for helping children with this condition and ensuring that they have a really good outcome for their lives. Charlie is now 4 years old, the window of opportunity for “early intervention” is closing quickly. I feel sad and let down for my child and for all of the other Liverpool children who without access to early intervention will live with the consequences for the rest of their lives.

Please do not write back to me offering any more information about ASD, advice or support for myself. I know where to get information from; I have been to support groups, I have read many books and researched the subject myself, I have paid to access training courses because I feel that a year wait is totally unacceptable, I have paid to see private occupational therapists as I could not access one through the NHS in Liverpool. I do not need any more information; I specifically want to have a full educational psychologist assessment and report, and access to therapies and to professionals who will work directly with my child. I do not understand why there are no such therapies commissioned in Liverpool. I do not understand why parents are expected to pay for every therapy and intervention out of their own pocket.

Please can you let me know what can do to help me to improve this situation? Are you able to ask questions on my behalf as to why clinical commissioners in Liverpool do not commission services for children with autism, or why it is so hard to access extra support in school?

Many Thanks

Sarah

Parent of Charlie