Eye Worry.

On Monday, I posted about our troubles with reading.  And if you read here, you know me.  I try to always find a silver lining.  But sometimes you can’t.  Well, maybe you could but it’d be a bit of bull…

Reading troubles multiplied by a millionfold on Tuesday night.

Tuesday night was the last straw.  He’d had seven hours of school, followed by 3/4 of an hour of PT, and an hour of OT.   Then there was the half hour drive home to discover he had to read 10 pages for homework.  He ate dinner and had a few minutes of a break.  Then, we sat down to get through it.

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He stopped reading every two or three words.  He looked away.  He sat there.  He simply would not say.the.word in front of him.  I pushed him.  I wondered what was going on.  He held his head on the sides of his eyes.  He cried.  He rubbed his eyes and said they hurt.

This was the same thing he did Tuesday night.  He has done it on and off for the whole school year.

This was the same thing he did Tuesday night. He has done it on and off for the whole school year.

I wondered if he couldn’t see clearly.  My husband is far-sighted (he can’t see things up close).  I am near-sighted (can’t see far away).  We tried both my glasses and my husband’s glasses on him.  He seemed to find mine slightly helpful, but pulled them right off.

Now, I’m in mild worry mode.  You know the mode?  You start imagining there’s something worse than a case of a tired child who doesn’t want to do homework.  But at this point, I’m thinking, maybe glasses.  That wouldn’t be so bad.  I wear those…

But he continued to complain that his eyes hurt.  Then, he slapped his eyes Tuesday night, with his hands.  Not hard, but with deep pressure.  He asked me to read, instead.  And he cried.

I held him.  We put the book away.  I got him ready for bed and gave him Children’s Tylenol.  He was fussy.  Then, he had a bloody nose.  I cleaned him up, gave him his breathing treatment on a nebulizer, and he finally fell asleep.

As the mom of a child on the spectrum, there are all the usual worries as a mom.  Then, there are worries about getting:

to this or that therapy,

to the restroom,

through general anesthesia for an MRI of the brain,

through general anesthesia for dental surgery at age 6,

through parking lots where he may dart when he’s frightened by noises,

to therapy to desensitize him to sounds that cause himself to do dangerous things like running in parking lots… the list goes on.

So truthfully? I’ve been brushing this “eye” thing aside for quite some time.  It’s times like these that I curse myself.  Who gave me “authority” to brush anything aside?  Of course, as I’m doing it, I’m not thinking how much more I know than my son.  I’m worried that I’m over-worried .  Does that make sense?

So, when he tells me that his head hurts, or that his eyes hurt, and he rubs them, or says he can’t read his homework, I give him a break, like he’s just a perfectly regular healthy kid. Then, I give him some Children’s Tylenol and we go back at it, because, I assume he’s just tired.  He does ten times the work that an average child does just to keep up with that average child.  I gloss over the hurt.

And, though fleetingly it crosses my mind that he might have something more serious than a case of the “tireds”, I don’t want to go there.  But when my kid slaps himself in the eyes and cries, I finally take notice.

The next day, I made the usual calls – to every medical provider.  An appointment was set with the pediatrician, a woman who has know him since he was 7 days old.

He was so good.  It was the best visit we ever had with her.  He answered her questions.  He paid attention.  He let her examine his eyes and his ears (unheard of – I tell you!).  She let him examine the instruments before she used them.

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And then, we talked.  We talked about eye exams and optometry.  We talked of getting glasses.  And we talked about the symptoms of a craniopharyngioma. And I freaked out.

A craniopharyngioma is a noncancerous tumor that is centered around the pituitary gland.  It is a slow growing, rare tumor that occurs in children mostly.  She told me she didn’t think my son had one, but she told me about four years ago that he probably did not have autism when she made that referral…

She told me about a little boy who was about my son’s age when he began to say that he couldn’t read his homework.   I said I’d thought he was able to see just fine when he was typing search terms for a YouTube search, or playing on his iPad but not so well when it came time for homework reading, which made me wonder whether he was just “playing me”.  She said this other little boy (age 7, like my son is about to be) also had problems reading his homework, and his parents felt the same way – and both those parents were physicians.

The way she explained it, the tumor presses on the optic area (remember – this is me repeating as mom – not a doctor!) which causes a kind of binocular, tunnel vision effect where if the child concentrates hard, he can still see enough to make out a few words and read.  And this is what my son’s been doing. He’s reading two or three words and looking away.

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So we are off to see, yet another specialist, to see about yet another diagnosis.  And I’m watering my keyboard because I’m afraid, and it’s just too much.  He’s only just about to turn 7 years old.  It’s not fair.  It’s not right.  But that’s just life, isn’t it?

I did watch him closely last night as he struggled again with his reader.  I stopped him every paragraph and asked if he could see the words.  He answered “yes.”  I asked him if he couldn’t see the words.  He said “could see the words“.  I hope and pray it is just eye strain and an issue of glasses. . .

Will you pray for my little boy with me?

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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20 Responses to Eye Worry.

  1. Lisa says:

    You know you and T are always in my thoughts. I’ll add you to my prayers.Hugs…

  2. Oh honey – I will pray all weekend for the best case scenario.

  3. yes, I certainly will. Please take care of yourself. Please breath. Please remember you have been down many scary roads before. Until the day that it’s not, this is just one more possible thing. If that day comes you will be there, you are strong. you will as always get T what he needs, he couldn’t wish for a better advocate to have in his corner. Thinking of you my friend.

  4. Denise says:

    Lots of prayers and love for you and Tay, (Mark too!)

  5. Cyn says:

    You are an amazing Mom who is doing everything she can for her little guy. I think you really need to hear this *hugs*. I am thinking of you guys and sending prayers to T.

  6. Erin says:

    Praying for you and your little man. Vision stuff is always so scary – it always seems like they can relate it to a million other scary things. We’re going through some of that here as well. Don’t beat yourself up. There are so, so many things to keep track of, I know I push things to the side a lot more than I should, just because I can’t handle one more doctor’s office. Hopefully this is nothing more than the doctor covering her bases. Praying for you. Hugs.

    • solodialogue says:

      I want to believe its just a covering bases kind of thing but she has really freaked me out. I am praying the worry is just me. I appreciate your voice so much. You are one of the strongest moms I know.

  7. You’re in my thoughts and prayers. I’d say try not to worry, but I know how impossible that is! Have you found a good pediatric eye doctor? There are so many small (and easily-corrected) eye issues without it being anything too scary. That said, my dad had a rare tumour that pressed against his optic nerve, distorting his vision. Always worth checking these things out- if only for that elusive peace of mind. ((hugs)).

    • solodialogue says:

      Thanks for keeping T in your thoughts and prayers. I have been battling doctors offices trying to get him in quickly. He is now really pushing on his eyes every day and Latin his head down to rest his eyes in school. Waiting is just the worst.

  8. Mom2MissK says:

    Karen… I am so sorry that you are going through this right now. I am praying that it is nothing… it is allergy season, after all. I can see to read most of the time, but allergy season? Ugh. My eyes blur. They burn. They hurt. Everything that T is feeling. I have to be EXTREMELY motivated to read something during this time of year. Maybe when the tree pollen settles and all… I hope. (hugs)

    • solodialogue says:

      Thanks Karla. His eyes are neither itchy nor red. He is having pain nearly constantly now and both his teachers and tutors are seeing it every day. My mind is going to dark places and I’m scared. The waiting is very hard. Hope to report something positive soon. Especially that I’m just a ridiculous over worrier. I’m good with that.

  9. Hugs to you. I am expecting to hear a happy conclusion soon I hope!

  10. Melissa Davila says:

    We have a son with ASD, he is 9. We did our reading homework for the last 2 years with a lot of struggles but he only had to read 3 small books 4 nights a week and we only had therapy on one day. When we hit 3rd grade this year we heard a lot of “my head hurts” or “my eyes hurt” or “I’m too tired to read”. There were so many tears because we also had math and writing homework and it would take us hours to get this done. I begged the school for an IEP and this year we finally got one. Part of it is no more homework. It’s been 3 months and his reading has improved to the point where he will spontaneously read signs and advertisements out loud as we pass them. I’m praying that you find out there isn’t anything wrong with your son’s eyes or his brain, that maybe, at 7 years old, he just gets tired of having to work so long everyday. Good luck.

    • solodialogue says:

      Thanks so much Melissa. I hope more than anything that he is just tired or working me or that it’s eye strain. But things like pain that is now resulting in him crying himself to sleep each night after I give him children’s Tylenol and shielding his head/pressing his head into me wHen he is in pain are making me really worry. I am just waiting on a referral and hoping to get him checked as soon as possible. Thanks so much for leaving me a comment with your support.

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