Friday, April 06, 2012

Special Needs Spotlight: Joshua



We are a family blessed with twelve children. Joshua is the sixth of our seven biological children. When he was a few weeks old, the pediatrician said something did not look right with his eyes.  We took him to a specialist, and he told us that both of Joshua’s retinas were detached. After DNA testing, we found out he had Norrie Disease.

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.


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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.”

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Allison, thank you so much for sharing your sweet Joshua with us!  I love that what you want other people to know about Joshua is that he's a blessing.  I couldn't agree more.  And while this particular spotlight focused on your Joshua, I feel like you could share a lot of amazing, wonderful insights being the mother of 12 kids!  Thank you so much Allison.

As always, if you or someone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!

2 comments:

  1. Wow, Allison, I admire you and your attitude so much! I have two kids, one with special needs, one without and I am completely overwhelmed. I can't imagine having 12! Your family sounds so warm and loving family. Thank you so much for sharing your family's story.

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  2. Linda P.6:06 PM

    Allison, I thank you and Miggy so much for sharing with us about your Joshua. When you said Joshua is perfect the way God made him, that really spoke to me!

    My son has special needs, and I, too, am left to wonder what all is going on in his head. I understand the feeling of wishing my child could express himself fully.

    That really touched me when he said that "today is such a blessing," and it turned out he was speaking to God! Wow! Heartwarming!

    You are a special mom to mother 12 kids, and I wish the best for your Joshua and all of you!

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