Special Needs Spotlight: Joshua

Norrie Disease is rare, with less than 300 cases known
worldwide, and is characterized by bilateral retinal detachment (complete
blindness), progressive loss of hearing, and possible mental deterioration,
autism, or retardation. It is inherited from the mother, but Joshua is the
first one known in our family to manifest the disease.

Miggy:  Can you take me back to the day your son was
diagnosed with Norrie disease?  Do you remember how you felt?  Can
you compare those first thoughts and feelings with how you feel now? 

Allison:  It was hard
finding out Joshua was blind, harder still to find out he may lose his hearing,
but the possibility of losing mental function was especially hard.  Mental
deterioration does not usually start with this disease until two years of age,
and I was devastated to find out that the child I knew then could regress in
his mental ability.  Now, I don’t even think about it.  Joshua is perfect the way
God made him, and the love of my life.

Miggy:  Explain how Joshua’s special needs affects
your day to day life?  

Allison:  When Joshua
was younger, he had extreme sensory issues, which made everything difficult. He
would scream for hours and hours with no way to help him.  We couldn’t go
anywhere, and no one was able to help us.  Today, Joshua has a full time
therapist, and after much therapy, he is a happy boy.

Miggy:  What are the biggest worries you face for
Joshua?    

Allison:  My biggest concern
for Joshua is making sure there will always be someone to care for him, after
his dad and I are gone.  I also worry about his inability to share everything
that’s going on in his brain.  I know he has lots to tell us, but his autism
hinders him from getting it out.

Miggy:  Now for a lighter question, have you ever had
any funny conversations/moments you never imagined due to your special needs
situations?

Allison:  We have had
lots of funny conversations with our little guy.  We used to worry, because he
didn’t talk for years.  Now he talks, but it doesn’t always make sense or isn’t
always appropriate.  We don’t care, though, we’re just so thankful he speaks.  So
one day a lady at church walked up to our family and said, “Hello.”  Joshua
replied, “Don’t pick your nose.”  I think the lady was shocked at his response,
but we laughed.  And then we have moments that completely take our breath away,
where Joshua is full of clarity and understanding.  One day he was taking a walk
with our therapist, and he said, “Today is such a blessing.” She asked him who
he was talking to, and he said, “Talking to God.”

Miggy:  How can people best approach or respond to
Joshua? Is there something you wish other people knew so as to avoid awkward or
hurtful situations?  

Allison:  I always
appreciate it when people walk up to us and speak directly to Joshua, instead
of speaking to us about Joshua.  His understanding is so much greater than his
ability to communicate.  Even if he
doesn’t respond, he still understands what you are saying.

Miggy:  What is one thing you’d like everyone to know
about Joshua?  

Allison:  I would like
everyone to know what a blessing he is to our lives. He brings us so much joy
and happiness. His laughter is contagious.

Miggy:  What is the biggest lesson you’ve learned
since becoming a special needs mom?    

Allison:  It was hard
to understand, at first, why this happened to our son.  But God was faithful and
reminded me that His ways are not our ways, and that His purposes are greater
than my understanding. We are so human in imagining how God may glorify
Himself.  We don’t know what brings Him the most possible glory.  He promises
that His grace is sufficient to bear whatever He knows is needed to bring me
into a deeper relationship with Himself.  As a result of walking through
hardships, He teaches us lessons that we would have never learned if we had not
walked through them. Romans 8:28 says, “And we know that all things work
together for good to them that love God, to them who are called according to
his purpose.”