What the “normals” think!

This is something I’ve not given that much thought to recently. What other families think of us, what our life is like and what’s “wrong” with our son.

When Jacob was little I was constantly aware that people stared or felt sorry fro us. I suppose it started with an innocent comment from a checkout lady in Asda…”He’s big for his age isn’t he?” “oh yes” I said. Well actually no, he’s way below the 25th percentile, It’s just that you think he’s 9 months old and actually he’s nearly 2 years old!

As he got older and it was more obvious ( and there’s nothing more obvious than a wheelchair) I was more aware of looks but there were no comments. When taking My daughter to a holiday event at the leisure centre years ago I can remember very clearly the most pitying look from an other mum. I was so angry ( not helped by the wheelchair access ramp being so steep I almost lost control of the tiny pre-school size chair. How you’d manage with an adult chair I don’t know) She had two small kids too, looked knackered, and much older than me. I couldn’t help thinking why hasn’t this happened to you? Awful I know, and now, a few more years down the line I don’t have thoughts like that, but it’s hard in the early days. While we were waiting one of her children slowly sidled up to Jacob’s chair, obviously curious. Quickly the child was pulled away. It was on the tip of my tongue to snap “it’s not bloody catching you know”. I’m so glad I didn’t..
While I was ranting about this later to my friend over a coffee she reminded me that people usually only want to be kind. This mum had pulled her child away cos she was worried about what she was about to say. We laughed when she reminded me of the “Goblin” story. My friend and her family had gone to eat in a burger restaurant with some other friends. In a corner booth there was a man on his own tucking in to his meal. She told me how he was a little odd looking and had “I’m going bald but can still grow my hair” hair in a pony tail. To her horror as they sat down at a table near this gentleman, my friends little girl (about 3 at the time) stood on her chair, pointed at this poor man and announced that there was a “goblin eating his tea!!!” .. When my friend tried to say in hushed tones that that wasn’t very kind and could she sit down and be quite, her daughter protested that she “wasn’t lying …and it was a REAL LIVE GOBLIN!”
So perhaps when children are pulled away from Jacob its because parents don’t want a “goblin” situation!! That’s what I like to think anyway

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My “forever baby”

 

We’ve just had Jacobs annual statement review where we’ve asked for a lot of amendments. We’re trying to get therapy for his sensory integration disorder funded by the local authority. Although all his professionals are in agreement I can imagine we’ve got a fight on our hands! Well bring it!..If my son needs it, he’s having it!

 

There’s a danger with reports and reviews to sometimes put too much of a positive spin on things. Jacob has made huge progress particularly with his walking but he’s still nearly 9 years old, can’t speak, point,sign or gesture. He cant tell me when he’s hungry, thirsty or feeling unwell. This lack of communication is now slowing down his progress and frustrating him. There is evidence that he understand so much more than he can communicate.

 

I’ve always describe Jacob as “disabled” or having “a severe learning disability”. I never say he’s got special needs. That could mean anything. With respect, it’s not like he’s a bit dyslexic! It’s hard in the beginning, but us parents must tell it like it really is. Otherwise others will underestimate the issues and problems we encounter. Some of the extra caring I do, I just take for granted. It has never occurred to me that one day I may not need to wash and dress him, I know he will always have his self care needs met by another.

 

Last week I spent some valuable time with my daughter Charlotte who is 14. Jacob was on a residential trip with school. It was lovely to just hang out together with out me having to “do stuff” for Jacob. I quite openly admit I’m struggling a bit with her growing up. She’ pulling away from me and wants her independence and confides in her friends perhaps more than me. She’ going through what every 14 year old girl goes through… She has a frustrating quantity of mood swings and seems incapable of being ready on time for anything regardless of my nagging her. Her room is like a skip and everything about me is embarrassing. We’ve always been close. She’s got a lot of empathy for a girl of her age and she seems able to read people really well. I can’t keep anything from her, even when I want too! I’ve found myself wistfully watching little girls with their Mummy’s doing things and chatting. God the chatting she used to do! A constant running commentary and if I gave up listening and said “ahu” I’d get told to “talky me properly Mummy!” When you’re pregnant and think about what if things aren’t OK you imagine the physical part of disability as being the hardest thing. But there’s “stuff” for that. Equipment, Chairs etc (if you can get them…but that’s another blog altogether!!) Actually what’s worse is the communication side of things.

 

But it came to me Charlotte’s growing up, moving on, and Jacob never will. One child growing up before I’m ready and one that never will grow up! How ridiculous is that!!

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Some answers would be nice!

It was a relief to take Jacob to his review with his developmental paediatrician on Thursday and for her to notice his new symptoms even before I had chance to mention them.  Any new sign could be a clue as to why he is the way he is.  It may come as a surprise to know that although Jacob has severe learning disabilities, he is undiagnosed.  However, I know there are lots of families in a similar position and if you’re in any doubt have a quick look at SWAN (syndromes without a name) http://www.geneticalliance.org.uk/projects/swan.htm.  There are lots of us!

Jacob has the following….

Severe learning disability

Hypoplasia of the corpus callosum

ADHA

Myopic with a squint

Sensory integration disorder

Hypotonia

This means he has the following symptoms…

He’s non verbal with no signing, gesturing or pointing

He learnt to walk at about 6 years old… but can’t get up from sitting and has a very odd rolling gait 

he has NO sense of danger…and limited self saving reflexes

Autistic like repetitive behaviour

…and a whole load of other things!  

Anyway, he’s started hyperventilation and his gait seems to have got worse.  I’ve discussed it with his physio at school (Jacob goes to a special school) who thinks it may be due to increasing sensory symptoms (more about this another time!)  But the paed thought it may be a whole knew symptom that might give us some clues as to his underlying diagnosis.  On the one hand I’m pleased ‘cos we might finally get some answers but then again we might be getting our hopes up.  We’ve had loads of tests including  FISH tests for all the usual causes of learning disability and after waiting a couple of years  for it to be available in the UK, a micro array.  All of them have been negative.  The funny thing is if you’d have told me 10 years ago I’d be wanting for a genetic test on my son to come back positive I’d have thought that was insane… but here I am…waiting!!!  Each time a particular syndrome is mentioned and tested for i look it up and convince myself that this is the one… The “club” we belong to and then a couple of months later we’ll get a letter saying …”you’ll be pleased to know the test was normal” .. Well how can that be cos my son quite clearly is’nt!!  All we know is that Jacobs problems look Chromosomal … so we just have to wait.

I can remember so clearly our first visit to the Children’s Developmental Centre when Jacob was about 10 months old.  He had missed most of his milestones…well, all of them really except the social ones, he’s always smiley and loves people.  It was our first meeting with the developmental paediatrician.  We’d been referred by our neonatal consultant.  Jacob was ill after he was born, as we now know because of his learning disability but more about that another time!  Anyway I remember being it the waiting area, pacing a bit, and reading all these posters for disability support groups and thinking “how great there’s support out there, but we don’t belong here… we don’t want to be in this club!”  Finding out as we did  4 months later that our son would be disabled, you suddenly become part of a huge minority group…and you never saw it coming.  Without sounding like a cliche, it’s like looking over a cliff, a shear drop, like having your world pulled from underneath you.  And also a relief to finally hear the words, as I knew there was something very wrong with our little man.  But  having an undiagnosed child is like being a minority within a minority! I don’t know any other undiagnosed children personally,  but in the last year SWAN UK has restarted with a very active facebook site.  On Thursday I left a post about the test Jacob’s paediatrician wanted to do and asking if anyone else knew anything about it and within a couple of hours there were answers.  SWAN mummies always come through!

Our paediatrician has said they will leave no stone unturned in the hope it will give us some answers. (We also see a geneticist, and are off the GOSH to the dysmorphology clinic in July for another opinion) One day I really think we will have them, but it may be a few years off yet!

 

 

 

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Getting started…

Hi everyone …

I’ve just worked out how to get started blogging.  I “signed up” a while back but couldn’t decide how to start.  I’m putting off going to the gym so this seems like the best time to get going!

This blog will be about lots of things going on in my life..my various missions.  You’ll notice I’m not really that creative or a natural writer, but I’m honest and I know there are many families and especially women experiencing what I am.

Most of this blog will be about our son Jacob, who has profound and complicated learning disabilities of an undiagnosed nature…He’s nearly 9 years old.  We also have a 14 year old daughter who’s very special and a normal teenager.  Jacob has changed our lives forever…all of us Charlotte, Martin, and me.  However, as his main carer my world changed beyond my imagination when we found out Jacob would be seriously disabled.

My two main missions at the moment are getting changes to Jacobs statement of special educational needs amended to include therapy we feel he needs and trying to get a small on line business up and running….Oh and we moved 6 months ago and I’m trying to get social services to change a downstairs room and toilet into a bathroom  and bedroom for the little man…. And there’s quite a bit to do to the garden…!

More later

 

 

 

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