The grief that diagnosis can bring

I have thought about writing this post for a while. But wanted to make sure that I wrote it exactly right.

I wrote briefly, about 9 months ago , on my feelings about J's diagnosis. For those readers who may be new to the blog his diagnosis is Asperger Syndrome, an acute anxiety disorder, he has complex sensory issues, and is also likely to have Dyspraxia too.

His diagnosis came a year ago, and only after we had reached a crisis point. That crisis point meant that for most of the last year J was only able to cope with an hour a day of school, and also that he needed medication. He remains on anti-psychotic medication to control his anxiety and also melatonin to help him fall asleep.

When the diagnosis first came, it felt like a victory. Not because I wanted him to be on the autistic spectrum, not because I wanted him to have any of these difficulties, but because it was the result of a long two year battle. A battle of trying to get people to realise that because he was displaying symptoms at home but not at school we weren't just neurotic parents. A battle of ignoring people whose opinion was that, because he was well behaved and not disruptive, he couldn't possibly be on the autistic spectrum. A battle against people who thought that, despite no medical training, thought they knew better.

A diagnosis suddenly triggers an awful lot of support and advice. This was the biggest thing for me - that we could finally get specific and relevant advice. That we were doing exactly what J needed, rather than guessing at the best way to help him. I have always been, and remain incredibly grateful for, this support. I can't praise highly enough both CAMHS and Autism Outreach for all that they have done and continue to do for our family. We waited so long for the diagnosis, getting to a point that was so horrible for all of us, and to which we hope we will never get again, that the overwhelming relief and support it brought us is hard to explain.

Then, a few weeks after the diagnosis, I was invited on to a course (run by CAMHS) for parents of newly diagnosed children on the autistic spectrum. I found this course a little difficult. While I was feeling euphoric about finally having a diagnosis and being grateful for any advice and support given, the other parents were mostly negative, dwelling on the difficult situations that they were in, particularly with their children's school.

But here we were told that it was very usual, after a diagnosis, to feel a sense of grief. A sense of loss for the child you were expecting, for the child that you had made plans for the future for. I didn't get this at the time, I was too focused on getting J the specific support and help we had been so desperate for, for so long.

But I think this grief hit me later, and stays with me now to some point. I don't want to trivialise grief in any way. I am grateful for my lovely biggest boy, and all that he teaches us, every single day. But the sense of loss hits at different times. The loss of the life we all expected to have, the plans that we made, the things we thought we might do.

It hit today, going  to look at a possible secondary school for J. The school was brilliant, and the senco even more brilliant. Then it hits at how early we have to start this process, how difficult this transition will be for J, for the whole family. It hits as I write the referral form for him to (finally) be assessed for Dyspraxia, for him to get the Occupational Therapy and Physiotherapy that he needs. It hits every morning that his 9 year old sister and 4 year old brother run happily into school, while I need to take him in to his class teacher to explain all that he is feeling anxious about that day. That (some days) he has to be peeled off me, crying. It hits when something like a family day out is too much for him to cope with.

I think it will get easier. That as J gets older and is taught ways to cope, then so will we as a family. But in the meantime I shall maybe remember that it's ok to feel a little bit sad sometimes. That this is normal. And to feel positive for the future, and all that it may bring.

Three wishes are coming true

There are lots of good things happening at the moment, and lots of things to look forward to. I was reminded earlier today of this post I wrote at the start of the year, about my three wishes for the twelve months ahead.

J has now done two full weeks of full time school. Today when I went to pick him up, he casually told me that he had gone to assembly this morning (he usually stays in his classroom and reads a book), and when his teacher had asked who would like to read out a prayer, he volunteered and read it out. Not only in front of the whole school, but also in front of a number of parents who were there! So wish 1 seems to be complete.

Today was also our first visit to look round a secondary school. It feels a little daunting, and we're pretty sure that the school we saw today isn't the right place for J, but having a statement means we can start the process sooner than we could otherwise, be more prepared, and have help and support in choosing the best school for him. Once again we were accompanied by our brilliant Parent Partnership supporter, who gave us great advice.

And as for things to look forward to, there are lots. Compared to this time last year when, in all honesty, getting through the day was hard enough for all of us. I've started running, which I love. I love the feeling I get, I love the challenge and achievement of it, I love pushing myself that bit further. As one of my good friends said "I was trying to think if I knew of anyone less likely to go running than you....and I just couldn't"! I didn't take offence because this is so true. So maybe the part I love most of all is proving people wrong. My husband would probably agree that I can be quite stubborn when I want to be! I'm also looking forward to getting stuck in to studying again, and will start that in the next couple of months.

I have booked for my daughter to go to ballet summer school in August, and she and I will stay with my sister for a week, and we have lots of fun planned. J knows all about it, and is prepared for it, and actually seems looking forward to a 'boys week' while we are away. Wish 2 is on track for completion.

The week after next my husband and I are going out for dinner, and then to see Sean Lock do stand up. It's the first night out we've had together for getting on for two years I think. Not only that but we have tickets to see one of our favourite bands in October, and another night planned for November to see Mickey Flanaghan.

So it's safe to say that wish 3 will be achieved too. Seeing as we're not quite halfway through the year, I reckon that's pretty good. I am proud of J. I am proud of all of my children for the way they have dealt with everything that the last year or so has thrown at them. And I'm looking forward to the next few months and all that they will bring.

Starting the search for Secondary school

Since J is in Year 5, and since we are now in the position where he has a statement, we need to start thinking about Secondary school already. It feels like a bit of a minefield, to say the least. As J is our eldest child we haven't even gone through the process in 'normal' circumstances, let alone with a child with special educational needs.

At this point I want to talk briefly about the National Parent Partnership Service. Because they are INCREDIBLE, and I am so grateful for the support we have received from them. Our Parent Supporter is beyond amazing, and without whom we wouldn't have got to the stage of being in receipt of J's statement at this stage. Our Parent Supporter attends every meeting at school with us. Our Parent Supporter supported us in submitting a Parental Request for a Statutory Assessment, and is there at every single step of the way, whenever we need them. I feel so much more confident knowing they are by my side, making sure that our voice is heard, and that we get our point across. I wanted to mention them, in case anyone reading this post can benefit from the service they offer, and was not already aware of them. Their website is here and you will be able to find your local service. They are also on twitter @NPPN_tweets.

Another way in which NPPS have helped us was in running a seminar on the process for applying for secondary schools if you have a children with a statement. Before I attended this I had no idea that the process was different. Instead of the usual procedure of giving a list of three schools in order of preference, the Local Authority will write to parents of statemented children in October to ask which one school we want our child to go to. We will then have fifteen working days to reply. Hence the reason why we need to start the decision making now.

And so we are starting to visit schools, and work out where will be best for J. Our Parent Supporter is helping hugely with this process, making appointments with SENCO's of local schools, and coming with us when we visit. We will take J's statement with us, and ask how each school will provide what his statement requires.

It does feel very daunting, and I have no idea what sort of setting will be the most appropriate for J. I've been told that I'll get a 'feel' for the right place when we're there. I don't know yet if it will be in a mainstream setting, or perhaps somewhere that has an autism unit or autism base. The distance of the school is also something that needs to be considered. I don't think he would cope with a bus journey, it would be too noisy and stressful, and I don't think he will be independent enough by that stage. There are also there logistics of possibly getting him to school in a different town from my other three children. Or he may possibly qualify for transport. We have agreed though, that when we find the right place for him, we'll find a way of getting him there, whatever it takes.

So that is what the next couple of months are all about. It will be such an important decision in terms of his future, as it is for any child of course. But I'm confident we have the support that will help us make the right choice.

And to finish on a positive, J has done his first full week in school since March last year - what an absolute star!

What a week

This will only be a fairly short post, but I really wanted to share what's happened over the last few days with everyone who has been so supportive over the last few months.

Back to school on Monday was the calmest that I can remember in recent years. J seemed excited about going back, and chose to stay for a little bit longer than we had planned, so did nearly 3 hours (in his Year 5 classroom) on the first day back. He did the same on Tuesday too.

On Wednesday we moved on, so that he went in to school at the same time of the morning as everyone else, for the first time in over a year. I took him in to his classroom rather than him going on his own. We took his sister and brother in first, then I asked him if he was ready. He looked me in the eye and said, "I was born ready." And in he went.

The same happened on Thursday, but then I got a phone call at 10:45. My heart felt it briefly stopped, only for the reason for the call to be "J says he would like to stay all day, so please can you bring his packed lunch down to school?" !!!!

So yesterday was his first full day in school for over a year, and today....he did it again. To say I'm proud of him doesn't scratch the surface really. Just a few short weeks ago we thought he may never be able to get back into the classroom, and look how far he has come. I think that he feels in control, that he knows he isn't going to be forced in to any situation that is too difficult for him. His teacher said today that it was all getting a bit noisy in the classroom which he was finding difficult, so he took himself off to the office to sit for a bit of quiet time. I'm so proud that he could recognise that the situation was getting tricky, remove himself from it, and find a way to cope.

Whatever happens next week, and I'm reminded often to be prepared for downs as well as ups, this week has been incredible. My biggest boy knows how proud we are of him, and is very rightly proud of himself too.

Sensory issues and sensory profiling

Last year I went on a course, run by CAMHS, for parents of children who were newly diagnosed with ASD. The session that was the real eye opener for me was the one about sensory issues. So many things that were being said made a huge amount of sense to me, and explained a lot of J's behaviours since he was really quite little. I realised why he was reacting like he was to loud noises, or strong smells for example, and began to understand why they had such an effect on him.

More recently, his Autism Outreach worker felt that it would be of great benefit to have a sensory profile completed. She felt that noise, in particular, may be one of the biggest barriers preventing him from being able to take part in full time school in his own classroom. She helped us to complete the profile, and it was then sent to the Occupational Therapist at CAMHS to be analysed.

I was told shortly after that this analysis had shown that J had a very significant sensory profile, and last week I went to meet with the OT so that she could explain both the profile and her recommendations to me.

There are four areas of the profile - Sensory Sensitivity, Sensation Avoiding, Low Registration (missing or taking longer to respond to sensory stimuli) and Sensory Seeking. He scored 'more than most young people' in the Sensory Seeking section, but scored 'much more than most young people' in the other three areas. The conclusion was that J can be easily overwhelmed by sensory stimuli and may find it difficult to manage these experiences. She explained that, as well as being a person on the autistic spectrum who had a need for routine and structure, that these sensory issues would also mean that he will probably have routines and rituals in order to make his experiences more predictable. Also that he may have become reliant on others around him if they support routines that he can see are soothing, but that at times his experiences may be overwhelming.

A number of recommendations were made, which we have started to apply whenever possible already. These are:

• Limiting the amount of information that is provided at one time
• Limit background noise, and develop an understanding of music and sounds that J finds soothing.
• J may benefit from wearing ear defenders.
• When reading information, cover up the information that isn't being looked at - for example by covering it up with another piece of paper. This will help him being overwhelmed from trying to take in too much information at once.
• To organise the environment and clear away clutter (this may well be the biggest challenge in our house!)
• To label drawers and items.
• To place everyday items (coats/shoes/bags) in the same place.
• To use dim or natural lights.
• Work in small groups or individually.
• To identify a quiet space for J to have alone time if needed, preferably a pop up den/tent.
• Identify soothing smells that J can wear (we already let him choose which fabric conditioner, air freshener etc we buy).
• To engage in physical activities that keep the head upright such as biking or running.
• To engage in activities that strengthen grip such as using playdough.
• To develop gross motor co-ordination - sitting on a gym ball while watching TV.

Also recommended was the use of a weighted blanket (which we already have), drinking through a straw as a calming technique, getting J a fidget toy to use in class when he needs it, and introduce hard chew edible food items such as cereal bars. She talked about how, if his teacher could see that he was starting to become overwhelmed that she could give him a task to do, such as taking a note to another teacher or to the office. This way he can leave the environment that is starting to overwhelm him, but is not just being left on his own to get more and more distressed.

She also couldn't praise highly enough the benefits of getting a trampoline. So that was the first purchase made. And even though the sodding thing took 5 hours to assemble yesterday, it's a huge hit already. J was bouncing last night, back out there at 7:30 this morning, and back to school today has been a lot less traumatic than I had feared. He's out there now, with his littlest brother, bouncing as I type.

I was with the OT for over an hour, and really felt that it was of a huge benefit. All of her recommendations make really good sense, and I believe that they will help relieve some pressure for J. I will also make school aware so that they can understand what sort of an impact sensory issues can have on him, so hat they know about the recommendations, and how he can be helped if his environment is becoming overwhelming.

I feel further equipped in ways to help my biggest boy cope with life and the environment around him. And that can only be a good thing.

Where is the respite?

A couple of months ago I wrote a post asking about people's experience (or lack of it) of respite care. The responses were varied, but mostly that there is a definite lack of any sort of respite care being offered to parents and carers.

Then today I read this article from Disability Scoop. It's an interesting read, and reports on a study that showed that just one hour of respite care a week could mean a huge positive impact on the relationships of the parents interviewed. It also mentions a previous study that showed children and young adults with autism, whose parent or carer was in receipt of regular respite, were less likely to need psychiatric hospitalisation - a fairly significant finding in my opinion.

So where is this respite? I certainly have never been offered any. A few weeks ago I was told, by a friend about a charity called Kids Short Breaks. My friend has a child with a diagnosis of ASD, and was told about the charity by another parent in a similar situation. My friend was offered 6 hours per month of respite for their child, and my friend urged me to get in touch with them. I did so, explained about J's diagnosis, and how he was only currently able to attend 1 hour of school per day. But then I was asked when I lived....and told that the local authority in my area does not provide the funding for this respite. My friend only lives 10 miles or so down the road, but is just over the border in to the next county. So whilst the local authority in the next county deems that a parent of a child on the autistic spectrum deserves 6 hours per month of respite, my local authority has blown a big fat raspberry and told me to shove off. Well that's how it feels anyway. What makes me angry the most is the fact that there is no consideration to individual cases. No one has weighed up the evidence and said, you don't really need respite, carry on as you are. No one has said that another case is more deserving and respite will be offered. My local authority has just said a big fat NO to respite of this kind for anyone at all.

So never mind that there is some evidence that it can have a positive effect on the well being and relationships of the parents and carers, and even a positive effect on the mental health of the child or young person in question. Everyone carry on as you were.

An update, and looking to the future

I've been lacking a little in inspiration to blog lately, but I thought I would give a brief update of how well things are going for J just now.

For the last week of term he went to school for 2 and a half hours each morning, and spent the whole of that in his Year 5 classroom, doing the same work as the rest of the class. He seems to have really enjoyed it. The plan is that, after the first few days of term after Easter he will increase to doing full mornings. He won't have to go to assembly, but will be able to stay in the classroom and read a book instead. Again, he seems excited at the thought of this which is brilliant. Once that is established then we will look at staying for lunch etc.

Yesterday he was invited to a friends house. The friends mum, who is wonderful, suggested that he go for an hour to start with and then see if he wanted to stay a little bit longer. He ended up staying all day, nearly 8 hours! I honestly can't remember the last time, if ever, that he was able to do that. He came home tired but happy, an incredible achievement.

I have an appointment next week at CAMHS to discuss his sensory profile, which I think will be extremely interesting, and hopefully I will be able to bring away from that some recommendations which will further help with his reintegration back in to school.

As for me, I'm starting to think about the future a little bit too. My recent trip to Westminster has rekindled my enthusiasm for all things political, and has inspired me to start studying again. I am hoping to start an online A level in Government and Politics within the next couple of months, and feel really excited about that. I hope that it won't be too long before I can think about going back to work too. As far as my working life has gone, I've only ever really done jobs that fitted in and meant that bills got paid. I've never really known what it is I wanted to do, or been a huge success at anything. I intend for that to change. Watch this space.