Undiagnosed Children’s Day

 

I’ve been thinking for a couple of days how to write something for tomorrow, Undiagnosed Childrens’ Day, an awareness day but just as important for parents like us a celebration of our fantastically challenging, unique, complicated kids.

I want to get across what makes it different than having a child with a known / diagnosed disability.  No more or less challenging, just different.  We are often told we may never get a diagnosis for Jacob and not to worry too much because his care will be symptom led.  While I appreciate this…. it does matter.  What he has, what he may be and how we could help him would all be a little clearer.

Emotions can be high so I’m hoping this isn’t an “over share” as one of the Swan UK Bloggers put it!

meds

meds

Jacob takes a variety of medication for conditions we think he has only because of the way he responds to these drugs.  It’s trial and error.  Diagnosing his symptoms is becoming more difficult.  Because he is undiagnosed we don’t know why

 

peanut

SPD

Jacob has severe sensory processing disorder.  He struggles with day to day situations and can easily become over stimulated.  Because he is undiagnosed we don’t know why

 

boots

Boots and Splints

Jacob has mobility problems.  He started to walk at 6 years old, has an unusual rolling gait and cannot get up from the floor without help.  Because he is undiagnosed we don’t know why.

Jacob has all his self care needs met by an adult.  He is washed, dressed, brushed, changed, (Jacob wears pads 24/7) fed and watered.  He needs someone to keep him safe at all times.  He will always need this 24 hour care.  Because he is undiagnosed we don’t know why.

toys

Fave toys

Jacob is nearly 12 years old. These are his favourite toys.  He has severe learning disabilities.  Because he is undiagnosed we don’t know why.

Jacob is never still, or rarely quite.  He finds it hard to relax and has episodes of panting, breath holding (until his lips turn blue) shrieking, twitching and squirming.  Because he is undiagnosed we don’t know why.

 

calm

Achievements

Jacob often gets recognition for his achievements at school. Good calm sitting is a biggy!

Jacob cannot speak, sign or gesture or point.  He is often frustrated as he wants to communicate.  Because he is undiagnosed we don’t know why.

 

model Pic

But Jacob is a lovely little boy with a beautiful soul.

 

baby pic

 

He was a gorgeous baby

 

swing

Good holding on!

 

 

He does learn.  Two years ago he learnt that if he held onto a swing he wouldn’t fall off!  And that this was fun!

jammy

donut

Jacob is almost always happy.

ball

He loves to be out and about.

 

daddy

He likes to be close and to be cuddled.

 

Like most boys Jacob likes rough and tumble and to be loud.

 

 

He is fun to be with and with quite a bit of planning we CAN do family events.

 

Jacob loves, and he is loved and well really that’s all there is…… because he is Jacob we know why!

 

 

 

 

 

 

 

 

 

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