A Year On

Last week was a strange one for me.

It was Summer Fair and Sports Day at Twiglet’s school, both held under looming grey skies and the constant threat of rain. The conditions couldn’t have been a greater contrast to the weather of the previous year, yet I was happy.

I remember last year sitting on the school field in brilliant sunshine, listening to the chat and laughter of other parents, cheering on my son but feeling utterly alone. We had just had the results of Pudding’s MPS screening test, and although we couldn’t be certain which of the conditions he would end up being diagnosed with I had my suspicions; none of the options were particularly encouraging.

I hadn’t spoken to Hubby about the diagnosis before then, as he had too much else to think about with work. The evening after we heard that positive result though, he had asked me, ‘So what is the worst case scenario?’ And I had told him, and watched the news hit hard, and held him as he sobbed.

It is hard now reading back over what I wrote in those early days. The news had peeled away everything else, leaving me raw and terrified, but unable to blurt out the unspeakable to anyone except a close few. The summer that followed was unbearably long, full of stressful appointments and assessments, and I felt like at any moment I would fall apart.

At the time it was impossible to believe that we could ever be happy and normal again. Yet gradually we have reached a better place.  And this summer will be so much better than last. Having Pudding’s weekly enzyme treatment at home and not having to travel to Manchester as often makes life far easier. We have visits to Drayton Manor and Grandma’s house to look forward to, as well as a week away in Warwickshire. Our respite hours are giving the rest of the family a bit of a break and we’re planning fun things to do. Mainly though, I know that the days when I end up in a soggy heap will be the exception rather than the rule.

Those days will still happen, I know. One of them was on Sports Day. Just as I was tuckercongratulating myself on how far we have come, I got back home to news that a child from the MPS II community had passed away unexpectedly overnight. I didn’t expect to cry so much – I had never met him and had had very little contact with his family. But cry I did. I cried for his parents and brother who are facing this awful loss. I cried for the other MPS families who will be hugging their own children close and wondering if it will be them next. I cried for those who have only lately heard about MPS and are wondering how they can cope with anything as terrible as this. And I cried because sometimes that is all you can do.

R.I.P. Tucker  (2000-2016)

The BFG

IMG_8111Once upon a time in a place not so far from here, a little boy was bursting with excitement. He had just met a real live author and now had a shiny new copy of a book signed by this famous man. His parents told him to look after the book as it was special, so he did. He read it carefully, marvelling at all the delumptious words, then he put it away on his bookshelf.

Years later, and that boy had grown into a man. He got married and had two boys of his own. As the eldest son grew and developed a love of stories, the man got down his book from the shelf and they started to read it together. Until this strange new invention called the interweb told the man that the book could be worth some money. The book was returned to the shelf and a less whoopsey-splunkers paperback was purchased.

Then the man’s second son was diagnosed with a rotsome genetic disorder. They got through the next year somehow. One day, the man suggested to his wife that they sell the book to raise funds for the people who help his son, and his wife said it was a scrumdiddlyumptious idea.

After all, what’s the point of holding onto a book – however precious or important? Family is what really counts.

So, I’m becoming an expert on the condition of old books. Is it a first edition? Yes. Is it a first printing? Ooh, yes. Is that foxing or tanning on the upper edge? Bit of both. Any marks on the pages? A spot on the signed page and one on page 26. The level of detail that’s needed is remarkable….

We’ve received an offer from one bookseller already, but can we do better? I don’t know – watch this space. (Proceeds going to the MPS Society. More detailed photos available to interested parties – comment or message me for details!)

In the meantime, Twiglet is really looking forward to the film coming out. Are you?

Portage

I’ve had on my list for a while to blog about Portage but wasn’t planning on writing it this week. Then I found out today that it’s Portage Awareness Week so what better time really?

Most people not in the SEN world will probably have no idea what Portage is. I certainly didn’t before Pudding. When our Speech and Language Therapist first mentioned mentioned the word I had visions of learning something about heavy lifting (probably very useful in our case).

The title actually comes from the town of that name in Wisconsin, USA, where the first scheme was set up. A much better name for it would be The Service That Every Special Needs Family Should Have. But I guess they thought that would be a little long-winded.

So what exactly is Portage? It’s a weekly (or fortnightly) home visiting service for pre-school children with developmental difficulties or disabilities with a strong emphasis on inclusion and partnership.

For us it started before diagnosis, before MPS was even mentioned and it very quickly became a highlight of our routine. Every week for an hour (usually longer – our portage Home Visitor, K, was never very good at leaving) we could focus on the positives. Having got used to reports saying ‘P has limited understanding of instructions’ or ‘P is behind his peers in all areas of development’, it was so lovely to celebrate achievements instead. And celebrate we did. K always had genuine pride in her eyes when I told her what improvements Pudding had made over the last week.

It is a wonderfully family-centred service with each session including child-led play, structured learning and time to focus on families’ concerns and priorities. And when I say structured learning, I don’t mean they sit the child down and start teaching the alphabet; it’s a way of breaking down activities into simple steps and looking at the next stage to work on. For instance one of the first activities Pudding was introduced to was threading (which he hadn’t had much success with previously). Home Visitors have access to a wide range of toys and resources that they can loan to families, so Pudding was able to start with a very easy set of beads and then worked through more and more difficult challenges to become a threading expert!

So Pudding benefited enormously from the focus on small steps to learning. But I would say that possibly I was the one who got the most out of portage. K was one of the only people I told about MPS in the early days, even before I told Hubby. Every Friday I would pour out my fears and my worries to her while Pudding played happily or worked on our latest targets. Every Friday she would cry alongside me and my load was lightened. This really did help me get through the worst of times.

As time has gone on, the focus of our sessions has changed again. We have been supported through the process of My Support Plans, EHCPs and now transition towards scIMG_7554hool. We’ve been given help and advice in so many different areas that I wouldn’t otherwise have had a clue about.

We’re coming to the end of our time with portage now and we’ve been so lucky to have access to this service – in many areas it has suffered greatly from austerity cuts.

Portage taught me a number of important things: how to break an activity down into small steps and celebrate each little achievement; what other services we could access; that as a parent I’m the expert on my child. But most of all it taught me that I was already doing a good job. And that is something that every parent needs to be told more often. Perhaps in the most ideal world this service would be extended to all parents in need of it.

Hoorah for Portage!

(For more information on the service, visit the National Portage Association’s website.)

No-man’s land

It’s a strange place we find ourselves at the moment.

Pudding has a serious genetic condition – those with the severe version of MPS II (Hunter Syndrome) are not expected to live beyond their teenage years – yet he is not actually ill.

Last summer when it seemed like there was never-ending roadworks going on outside our house, one of the workmen knocked on the door to apologise, saying ‘I understand you have a sick child at home’. I was livid. Not with him. But with the person that had used my child to justify their own complaints about the noise. I realise now that I was also reacting against this definition of Pudding as ‘a sick child’.

Yes, we have all the hospital trips and treatments and other appointments. Yes, there are slight issues at the moment with his airways, joints, heart and so on.  But he can still run, eat, communicate in his own way and carry on a vaguely normal life. Any stranger watching him shriek his way around the playground would see a boy who has his differences but to all intents and purposes looks healthy.

Unlike those with more advanced MPS, he is not needing a wheelchair full-time or feeding tube. I know we’re lucky that we don’t have to go there yet.

A few people have asked me lately how the trial is going; is it working? The simple answer is we won’t know for a while. Pudding has impressed us with a few things in recent weeks, enough to give me some small hope that it may be making a difference. But the normal course of severe Hunters is for children to continue developing until the age of 4 or 5 (he was 4 in February) before reaching a plateau and then starting to lose skills. Therefore it is impossible to put progress down to any particular factor right now.

So for now, we wait.

This no-man’s land is home for the foreseeable future, so I’m settling in for a long stay. There are certainly worse places to be.