Tag Archives: disability

So much more than running

Last Friday was Undiagnosed Children’s Day and I wrote a post about Adam’s achievements in the past few years.  My step-daughter shared it on Twitter saying that it was the best blog she’s read in ages – she obviously doesn’t have very high standards if she thinks that – because it was about The Boy.  If that is her reasoning then, I’ll let her get away with praising my blog.

Anyway, it gave me an idea for another post about Adam and his achievements.  More specifically his achievements at parkrun.

On Tuesdays and Thursdays I try to go running with a group of people who I met at parkrun.  They are mainly retired or semi-retired and I am easily the youngest amongst them but they are a great group of people and very supportive.  Anyway, last Thursday I was running with a lovely gentleman who was taking it easy after completing the London Marathon last week – he’s now completed 275 marathons and wants to get to 300 before he finishes!  We were having a lovely chat and he happened to mention that he remembered how much I had to persuade, cajole, encourage and bribe Adam round the 5km when we started parkrun.  Now, I’ll either leave him or he’ll leave me because he, and I, have more confidence.  I remember to first time I decided enough was enough and left Adam to walk to the finish with the thought that I would go back and get him when I’d finished.  I didn’t get very far back down the course because my running buddy’s wife had caught up with Adam and told him to start running again!  As he does with everyone else, Adam left her behind with about 200m to go.  I was very grateful to her because it confirmed what I already knew, our parkrun family would look after Adam and help him on his way.

My running buddy also mentioned how much he enjoys it if we start behind him because he knows that Adam will catch up with him and say “Hello” with a big grin on his face before running away.  Adam will also let anyone he knows know he’s coming because he’ll be telling me, very loudly, who he can see.  They get plenty of warning that Adam will be coming to say hello and then pass them.

This happened to another running buddy of mine on Saturday.  We were only about 800m from the finish when I caught up with her and Adam had left me at about 3.5km to make his run for home.  When I caught up with her, she mentioned how much confidence Adam has gained, especially in the last couple of years, because more often than not he’ll run the last 1km to 1.5km on his own.  If I’m doing run/walk pacing for someone else, Adam will even run the full 5km either with another parkrunner or on his own.

parkrun has contributed more than confidence in running though.  Going to parkrun every week has also given Adam more social interaction, team-working, communication skills and the chance to try a variety of volunteer roles.  Now, he will go and talk to people he knows, and even drag them over to say hello to me!  He will do a volunteer role while I run because he feels safe in the parkrun environment.

Finally, last week we got a box from the Co-op as they are now an official partner of parkrun.  I knew they were going to be at York parkrun but didn’t know we’d each get a box of goodies to take home.  It’s a shame my husband wasn’t there too, we could have had 3 boxes to bring home 🙂  I was pleasantly surprised with t he contents of the box too:  a 500ml bottle of olive oil, a tin of chopped tomatoes, a tin of cannellini beans and a jar of crushed chillies.  Adam immediately said that we can use the tomatoes in our mince next time we make bolognaise.  We could add the tin of beans too although when my husband saw the box he said he could use the beans in his salads for lunch.  I guess he can have one and we’ll use the other.  Oh, we got a £3 voucher to use when spending £3 or  more at Co-op too 😀

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Frightened? Me?

Journal Jar I haven’t posted a Journal Jar post for a while so I thought I’d post one this week.  The next prompt out of my jar is:

What can frighten you the most and why?

A lot of things can, and do, frighten me.

Drivers not paying attention and doing silly things;

My son growing up and walking to college on his own;

Leaving my son one day in the hands of, essentially, strangers and hoping that they will care for his welfare without taking advantage of him.  This one is probably the one which frightens me the most.  I know every parent worries about their children as they grow up and hope that they won’t be taken for a ride but, the difference is, most children will speak up and take action.  Those of us with children with disabilities know that they don’t always do that.  So, I’m sorry, I’m going to be holding on to the apron strings as long as possible, even if it is a very long apron string when Adam finally decides he is ready to move out of home.

We Are Stronger Than We Think

Eleanor Roosevelt said: “A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water.” Tell us about a time you felt your strength.

I feel my strength every day.  It’s kind of unavoidable as a parent or as a parent of a disabled child or, as I feel like at the moment with my husband being away, as a single parent.

They say that you are never given more than you can handle but sometimes after a car journey which lasts 55 minutes instead of 25 because of heavy, stop-start traffic and trying to concentrate on the traffic while my son is trying to have a conversation with me it’s hard.  The conversation itself would have been fine if the journey had lasted 25 minutes instead of 55.  However, the conversation gets very repetitive and sometimes hard to understand as my son uses signs to reinforce his, mainly, unclear speech.

Most of the time, I don’t consider that my life is any harder than any other parent.  In fact, I don’t have a lot of the challenges of many parents, my son doesn’t have a mobile phone so I don’t have to wonder what he is saying, silently, to his friends.  He doesn’t have a Facebook account either.  I have other challenges which are becoming more apparent as my son gets older; what is he going to do when he finishes school?  Will he be able to get a job, even with support?  Will he be able to travel independently to get to college and, in the future, work?

I have had to be strong since my son was born over 19 years ago but I think I’m going to have to be even stronger in the next few years as my son goes through the transition from school to college to work and, eventually, leaving home.  Cutting the apron strings and giving the responsibility of my son’s care and welfare to someone else is not something that I am looking forward to but he can’t stay at home forever.

Last Year of School, What Next?

zero-to-hero-badge

What happens when your disabled child gets to the end of their school education?  Well, that all depends on your disability and the severity of it.  If you are lucky, or unlucky depending on your point of view (I go with lucky) your child will have had a wonderful 12 years of education, either in a special needs school or, if appropriate, with support in a mainstream school.  Then, again if you are lucky they may be able to stay at the same special needs school for the post-16, 6th form, provision.  But what then?  What happens when your child gets to the end of, in my son’s case 15 years of school?  What do we do now?

My son has a learning disability, amongst other things.  He has a speech delay and motor skills delay too.  His speech, whilst there, isn’t always clear and a lot of sounds sound the same.  I often think he’s saying walk instead of work, and vice versa.  His motor skills are still developing, although this isn’t very noticeable any more, until you see him run or throw or jump…

Anyway, what next?  My son is fortunate, he has choices.  His learning disability, whist severe enough for him to need special education – he’s about the level of a 6 or 7 year old in most subjects – isn’t so severe that he won’t be able to get some independence.  He will be able to go to the local college and access their Pathway to Work and Independent Living courses.  From this he will be able to access other courses when he decides what he wants to do.  My son has applied to the college to do this and should have and interview and find out if he has been successful before Easter.

Unlike most children, those with disability can have access to education, as long as they are still learning and progressing, up to the age of 25 instead of 18 or 19.  This means that as long as it is still beneficial, my son can continue in education for another 5 years.

As part of today’s Zero to Hero, we were asked to include a new element in a post.  I’m not sure what I can include that I don’t normally.  I have included links to external, and my own blog, content; I’ve included photos which I have uploaded and images using a URL; in the past I’ve even embedded video.  However, what I thought I would do on this post is create a photo gallery, I hope, of my son including photos from different stages of his life.

Tomorrow’s NaBloPoMo prompt asks us to write about our tender point, my son is mine so I’m going to cheat and use this for that prompt too.

Undiagnosed Children’s Awareness Day

The Makaton Charity posted this on their Facebook page today and it immediately hit home with me.  You see, my son is one of those undiagnosed children.  I didn’t even know that there was a charity who support families of children with SWAN (Syndrome Without A Name).  My son is 18 now and it may be a bit late but I can totally relate to families who have a child who has had every possible test to try to find out what is wrong and confirm that it isn’t something only to be told, “Sorry, we don’t know what is wrong.  He has a global development delay.”

For us, when our son was 5 we were told that he had Cerebral Palsy.  Great!  We have a diagnosis.  Then, less than 2 years later we moved and, consequently, changed paediatricians who said, “No, it isn’t Cerebral Palsy but whatever it is has similarities to Cerebral Palsy.”  So, more tests and an MRI.  The reason it isn’t Cerebral Palsy?  No brain damage on MRI and muscle tone increased too much.  The one diagnosis we have is microcephaly which essentially means “small head” and having microcephaly doesn’t necessarily lead to a learning disability or developmental delay so that doesn’t help either.

We are fortunate that our son has had a Statement of Special Educational Needs since he started school and, even more fortunately, got a place in a special needs school without a diagnosis.  Unlike some families, we have never felt isolated or felt the need for support groups as, even though my son is most definitely special, I’ve never felt any more overwhelmed or challenged than other members of my family or friends.  In fact, sometimes I think I have it easier!

So, here’s to all those families like mine with an undiagnosed syndrome because we definitely are not invisible, there are lots of us out there.

Undiagnosed Children's Awareness Day

 

Why not check out some other blogs about SWAN and Undiagnosed Children’s Awareness Day:

Swan UK – Wear Blue! Wear Pink! http://www.undiagnosed.org.uk/archives/4133
Swan UK – Family stories: Undiagnosed Children’s Awareness Day 2013 blog post link up  
http://www.undiagnosed.org.uk/family-stories-ucad-2013-blog-post-link-up
Just Bring the Chocolate – Family stories: Undiagnosed Children’s Awareness Day 2013 blog post link up  http://www.justbringthechocolate.com/family-stories-ucad-blog-post-link-up/
SWAN UK Facebook page  https://www.facebook.com/SWANchildrenUK

Thank you NHS

I have been reading Disability On a Dime’s blog about getting a diagnosis for your child and it’s at times like this when I am glad I live in the UK with our NHS (please let it continue and not be scrapped!).  It’s not great but when my son was small we got all the different doctors doing their tests and referring us to other specialists without having to worry about “how are we going to pay for this?”  My son was initially referred to a paediatrician when he was 9 months old when he failed the 9 month check up as he wasn’t crawling properly or trying to pull himself up against furniture.  The paediatrician said that was OK, he was getting around albeit like a caterpillar – pulling himself up on all fours and flopping forwards, it worked so why worry?  He also had some muscle tone in his legs and arms so he was probably just lazy.  As it happens, a week before his first birthday the Boy started crawling properly and walking round the furniture.  At 18 months, he failed the next check up as he wasn’t talking or walking independently.  On this occasion though we weren’t referred to the paediatrician, our GP gave the Boy until he was 2 to either walk or talk.  He started walking at 22 months and so was given a reprieve.  However, the next benchmark test at 3 years meant another jump backwards so we were, once again, referred to the paediatrician and all the tests started – blood tests, hearing tests, sight tests, speech therapy… and the list goes on.  He is now 17 and we still don’t have a proper diagnosis.  I’m not sure I want one now though as I don’t think it would help.

That’s not to say that we have never had a diagnosis.  When he was 5, the Boy went for his annual check up with the paediatrician and was diagnosed with Cerebral Palsy.  At the time, it was a reasonable diagnosis – his arms and hands would bend and go up towards his face when he tried to run, he’d often walk/run on his toes and he could dribble for England.  The dribbling was so bad that he wore scarves round his neck to mop it up and his chin would get red raw, especially in winter.  The dribbling was improved following an operation to remove 1/2 of the saliva glands and move the saliva ducts from the front of the mouth to the back.  This produced its own problems but that is another story.

Back to the diagnosis of CP, it turned out to be an incorrect although reasonable diagnosis.  We moved from Basingstoke to York when the Boy was 6 and, therefore, changed paediatricians.  The new paediatrician said that he didn’t think that CP was a correct diagnosis as the Boy’s muscle tone was too good, not great but too good for CP, but that CP was as good a diagnosis as any and probably easier to explain to a lay person than his actual diagnosis of microcephaly (small head).  Time for more tests – more bloods and MRI just to check for brain damage (there wasn’t any).

So, back to the point of this post.  I’m grateful to be living in the UK and have the support of the NHS.  We fortunately didn’t have to worry about the cost of all the blood tests, the MRI, the paediatrician visits (only once a year but the cost would soon add up), the paediatric ophthalmologist (until the Boy was 14 when he was given the go-ahead to go a high street optician), the ENT specialist, the Oral Surgeon, the special needs dentist, the school nurse who has been there for us through the migraines and the bed wetting, the GP… the list goes on.  Thank you NHS for your continuing support.  Let’s hope that it continues.