Living With Autism

My aim on these pages is to give you a brief glimpse of what life is like for us as we try our best to raise our daughter - who just so happens to be on the Autistic Spectrum (among other things).


Some postings may be longer than others...  and some may literally just be a sentence or two.  But whatever I choose to include will (I hope) give you some insight...  and hopefully just a little understanding.

I would ask that before you read any further you read my 'About Me' tab section.  It's not a pleasant read, but it was a period of time that defined and changed us all...

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Anecdotes...
(These will be added to from time to time.  Just don't expect to find any logic in this section...)

Daughter has a week off school as she is ill.  Whilst she has been away the doors to the Maths Block (a single story set of rooms about 6 car lengths from where she is based in Learning Support) have been changed.  One-to-one tells daughter to go on ahead of her and she will catch her up.  Daughter gets 'lost' because the doors look different and confuse her.
Everybody laughs at her because she's been at that school for two years...

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Shower Gel is nearly empty, so I place a new bottle next to it.  The width of the bottle is about the size of the gap between the two.  I go in after she has showered to comb conditioner through her hair and she comments that it was difficult to squeeze the shower gel out.  I say nothing, but point to the full bottle close by.
Her response?
"I didn't see that there" !!!

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Daughter is standing in the middle of the lounge, staring up at the ceiling and looking confused.  I ask her what the matter is and she says she can 'feel cold water' dripping on her head.  The ceiling is fine and there is no leak.
She had been doing this at school for a few months, apparently.
Why?
 Our best guess is that it was some sort of sensory feedback that went a bit 'squiffy'...
or
(For those of you who have no idea what I've just written)...
We suspect that somewhere between the brain sending and receiving information something somewhere took an interesting detour!!!

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I find out one morning that my daughter is in constant (physical) pain and has been all her life.
She's 12yrs old when she gives me this news.
I asked her why she hasn't told me sooner.
Her response?
"I thought it was like this for everybody and only told you because it was getting worse".

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Daughter goes out for a very rare walk with a school 'friend' one lunchtime and gets a plastic bottle thrown at her.  It hits her on the back of the head.
She comes home from school and asks me two questions:
1.  Why were the other boys in the group all laughing when the bottle hit her?
2.  Why are people so mean?
I had to explain that people like to 'share' the experience and that by laughing it made them all feel like they were a part of the group - even if they weren't the one's who had actually thrown the bottle.
I have no answer for No. 2.

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Diary Entries...
(These will be 'ad hoc' and sporadic.  After all, I don't want to bore you to death!!!)
However...
  Before I make a start on these entries, I think it's best if I fill you in on just a little background information...

You see, as if 'mending' after what we had all been through wasn't enough for our daughter to contend with, I found out one day (purely by accident) that she was in constant pain.
Let me start by explaining that in more detail...

My daughter's 'brand' of Autism (for want of a better word) means that for her, when she says something to you, you have to be paying attention and ask questions.
Why?
Because her 'inflection' (tone of voice) does not change to give you any idea of the severity of a situation...
In this particular instance, she was getting ready for school one morning (around two years ago, I believe) and made an 'off the cuff' comment about her back hurting.

Now we already knew about her leg pain...  That had been ongoing for a few years now and she had seen a few Physiotherapists over the past two years as it was getting worse rather than better.  We were told she had one leg longer than the other, but not enough to cause any issues...  and that she had 'Patella Maltracking' (which in layman's terms means her kneecaps don't move fluidly up and down as they should).
She was given exercises to do, but they were very painful...  and she tires very easily.

We also already knew about the arm pain...
The Occupational Therapist she was under at the time gave school some exercises to do with her.  Let's just say that they were a little overzealous and their first (and only) attempt, which resulted in my daughter's hand swelling and her wrist being bandaged up for months.  It took the best part of a year for her to stop complaining that it hurt, but we later found out it never really did.  She just got used to the pain...

So when she told me that her back was now hurting, I knew (from past experience) that I needed to ask specific questions as that was the only way I was going to get a clear idea of what was going on.
It turned out that not only was her back hurting, but the back of her neck, her shoulders, arms, hips, legs, knees and ankles, too.  They were all hurting her...
I asked her why she hadn't told me sooner (she was around 12yrs old at the time).
Her response?
"I thought it was normal and everybody felt like that.  I only told you because it was getting worse".

Long story short, I took her to see the GP at the first available opportunity I had.
The GP sent her off for an x-ray of her hips - just to be on the safe side, made an appointment for her to be seen by someone in Biomechanics (a specialist Orthotics department that assesses 'movement and gait)...   and asked me if anyone had ever mentioned Hypermobility Syndrome.

(I'll skip over some of what happened next, but I will tell you this as it's relevant to why I am giving you this background history)...

My daughter had been under the care of a Peadiatric Consultant ever since she was discharged from Occupational Therapy.  In reality that equates to two 10-15 minute sessions a year for the past three and a half years.

Now the Consultant was aware of my daughter's trips to Physiotherapy and their findings...  and completely disagreed with the leg length discrepancy issue.
When the issue was raised again a few years later (by Boimechanics), she dismissed the issue yet again, saying that anyone can stand so that it looks like one leg is longer than the other.
She also dismissed an extensive list I had put together of all of my daughter's 'ailments'  (I was trying to be really thorough in the hopes of getting some support from her)...  and told us that not one person could have all of those issues wrong with them.
She then suggested my daughter should be seen by Mental Health as she had exhausted all of her tests and could find no reason to explain my daughter's symptoms, dismissing that even if she did have Hypermobility Syndrome, 'it's just a few aches and pains'.
Really?
That's not what I had read since discussing it with the GP.

I asked the Consultant this question...
'What are we supposed to do when other people we see are disagreeing with your findings'?
Her response?
'Stop taking her to see other people'.

Well, my daughter left mid appointment in floods of tears.
I went with her whilst my husband was subjected to more of the Consultant's views of the situation...

...  and then phoned my GP practice the following morning.

I should say at this point that my daughter is also seen by a school liaison service called Autism Outreach.  Unknown to my daughter, even her Outreach Worker believed that the pain was probably all 'in her head'...  or that if it was really there it was probably magnified out of all proportion because of diagnosed Sensory Issues.

So I made an extended appointment to see the GP and took the Outreach Worker along with me...  and I basically said that given what my daughter had already been through it would not be fair to simply assume Mental Health issues...  and could I please have a second opinion.
I could ALMOST hug my doctor, because at this point the Outreach Worker 'chipped in' with her thoughts...  and my GP retaliated with, "Well, you can't make up Rolling Ankles, can you"?  (Another issue Biomechanics had picked up on).

(Jumping ahead again here)...

I am SO glad I asked for that second opinion.

In the space of the past few months, my daughter has been thoroughly reassessed.  She has met with a Rheumatology Consultant who has picked up on a curvature of the spine issue that could well be impacting on the pain we believe stems from Hypermobility Syndrome.
She is due to be seen by a Spinal Consultant in Mid February, 2016.

Occupational Therapy (new team, different hospital to one's seen in the past) have also thoroughly questioned and assessed her.  They work with kids where the pain's so bad that sometimes they are in wheelchairs to begin with.  So they were fantastic and did not dismiss my daughter's ailments at all.
A second joint appointment between them and Physiotherapy is due early December, 2015.

She was also sent off by Rheumatology to be seen by Orthotics.  We saw them for the first time last week and are having boots especially made for my daughter...  who does indeed have one leg longer than the other (which is probably related to her curvature of the spine 'issue').
The man we saw was so lovely with her...  and very understanding.  After getting her to stand in front of him and bend forward so that he could see her spine he looked over at me and said, "she must be in a lot of pain"...

It's been a long time coming, but we are making some progress and my daughter's pain is now finally being taken seriously...

As for the Consultant we were under?
Not any more.
We've had all care transferred over to the new hospital...  with our GP's blessing!

The 'joke' of it all is that we've ended up back at the same hospital that I swore we would never set foot in again given what they put us through as a family.

Just goes to show how desperate I was, I guess...

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(Coming Soon)...

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