Book Talk
I finally received the book I ordered, Understanding Williams Syndrome, from Amazon yesterday. It is quickly apparent from flipping through it that it will be a reference we are extremely thankful to have in our library. I am more than pleased with this purchase. The table of contents is arranged in outline format, so it is easy to see exactly what each chapter contains. Overall, it also seems to be written in plain English and much easier to digest than I anticipated it would be. It seems to contain more than enough fascinating scientific tidbits but an equal amount of real life information to help us survive and cope, including specific recommendations we can employ immediately, as promised. Of course, I am at home with my nose in a medical book.
We once again battled devastating hyperacusis yesterday. I took Erik to see friends of ours, and it was initially a complete disaster the moment we stepped through the door and he heard their children making the normal noises all children make. He climbed me, straddled me, and held on for dear life, bawling his eyes out. He is getting so big that when he does this, it makes walking anywhere quite difficult. I am beginning to feel like a telephone pole with an elephant clinging to it. Erik's sleep has been hit and miss lately, and when he is tired, his hearing seems even more sensitive, if that is possible. I often have a difficult time believing this is the same kid who failed several hearing tests when he was born! Luckily, our friend Alan was nice enough to take Erik on a quick motorcycle ride and over to meet the neighbor and his chickens. He seemed to calm down immensely after that but was still quite jumpy. Once both of their children hit the sack, Erik's personality did a complete 180, and he was adorably chatty, climbing over all over us adults after being virtually comatose for an extended period of time. This is such a frustrating mystery to me. In our day to day life, hyperacusis is by far the most disabling part of what comes with this syndrome. It can make or break any outing instantly. I have never been this aware of my surroundings in my life. I know precisely where the milkshakes are made in restaurants and the exact noise the UPS delivery van makes when it backs up. Even when Erik is not with me, I am acutely aware of sounds and take mental notes on them if I believe they may be upsetting to him in the future. I took a quick peek at what the book said about this particular problem, and they recommended making headphones or earplugs a part of play to gently convince a child to wear them later in a noisy situation. There were also descriptions of children exactly like our son for whom even applause during church is upsetting and calls for a child's immediate removal. Apparently, I'm not the only mother sitting in the hallway at church. Our upcoming trip to California on a small plane has the potential to be a nightmare, and my stomach does flips just thinking about it, but we have plenty of time to prepare. The flight is almost always a deafening, bumpy one during which I can't help but think of the crash scene from the movie Alive or start singing Patsy Cline songs to myself (yes, I'm morbid that way). Despite the fact the route is quite familiar to me and I have flown many times, you will likely find my eyes tightly squeezed shut, a plastic cup of sloshing wine in my hand, and a very rudimentary, desperate prayer on my lips. I can hardly imagine what it will be like with Erik by my side, but I am looking forward to having someone to take care of and focus on at the same time. We'll see.
Life with Erik is always an adventure. Even if we have to hold on for dear life.
We once again battled devastating hyperacusis yesterday. I took Erik to see friends of ours, and it was initially a complete disaster the moment we stepped through the door and he heard their children making the normal noises all children make. He climbed me, straddled me, and held on for dear life, bawling his eyes out. He is getting so big that when he does this, it makes walking anywhere quite difficult. I am beginning to feel like a telephone pole with an elephant clinging to it. Erik's sleep has been hit and miss lately, and when he is tired, his hearing seems even more sensitive, if that is possible. I often have a difficult time believing this is the same kid who failed several hearing tests when he was born! Luckily, our friend Alan was nice enough to take Erik on a quick motorcycle ride and over to meet the neighbor and his chickens. He seemed to calm down immensely after that but was still quite jumpy. Once both of their children hit the sack, Erik's personality did a complete 180, and he was adorably chatty, climbing over all over us adults after being virtually comatose for an extended period of time. This is such a frustrating mystery to me. In our day to day life, hyperacusis is by far the most disabling part of what comes with this syndrome. It can make or break any outing instantly. I have never been this aware of my surroundings in my life. I know precisely where the milkshakes are made in restaurants and the exact noise the UPS delivery van makes when it backs up. Even when Erik is not with me, I am acutely aware of sounds and take mental notes on them if I believe they may be upsetting to him in the future. I took a quick peek at what the book said about this particular problem, and they recommended making headphones or earplugs a part of play to gently convince a child to wear them later in a noisy situation. There were also descriptions of children exactly like our son for whom even applause during church is upsetting and calls for a child's immediate removal. Apparently, I'm not the only mother sitting in the hallway at church. Our upcoming trip to California on a small plane has the potential to be a nightmare, and my stomach does flips just thinking about it, but we have plenty of time to prepare. The flight is almost always a deafening, bumpy one during which I can't help but think of the crash scene from the movie Alive or start singing Patsy Cline songs to myself (yes, I'm morbid that way). Despite the fact the route is quite familiar to me and I have flown many times, you will likely find my eyes tightly squeezed shut, a plastic cup of sloshing wine in my hand, and a very rudimentary, desperate prayer on my lips. I can hardly imagine what it will be like with Erik by my side, but I am looking forward to having someone to take care of and focus on at the same time. We'll see.
Life with Erik is always an adventure. Even if we have to hold on for dear life.
Labels: books, hyperacusis, Williams syndrome
posted by Nancy at 3:36 PM
6 Comments:
Well, Sweetie, we're holding on with you. Is there nothing that Erik can take to make him sleepy (we'd give the kids kids cold stuff to make them sleep when it was a must, don't know what Erik can take) so that he might be able to relax more on the plane?
Once I was very sick on a flight home from Indiana (come to find out I had 103 fever) and in mid air somewhere between Indiana and Texas I decided I had to get out of the plane. Had to be sedated. It put me (and the other passengers) out of a lot of misery.
Hey, Kath. I love hearing from you.
I'm not sure, but Benadryl is probably okay. I can check on that. I have never done it. I asked Brian how long he could possibly cry, and he answered, "The whole flight." We both laughed, and we are almost ready for the challenge. It's a little under a year away, so we have time.
xoxox
You know I met this little girl this summer who had special ear plugs made through her doctor. They were cool pink and white swirls and fit her ears perfect. She has a sensitivity to noise so they made these cool ear plugs. Maybe you could look into that for Erik. Enjoy your book and I hope you find tons of helpful things in it.
Hugs,
Stacey
I am all over the Benadryl! But it can make some kids hyper instead of sleepy, so defintiely give him some BEFORE the trip to see how it works for him.
It's so odd to hear how some of that noise bothers him, but then to take off on a motorcycle doesn't... must be the "shrill" of some noise?? The plane may not be a bother.
Feeling for you guys over here :(
Nance ~ I loved the last line! Congrats on getting the book. Anything written is PLAIN English is always better... usless you have an M.D. behind your name. ~ jb///
The thought of putting Jaiden on a plane utterly terrifies me. + i get air sick so i dont like flying. Maybe the Benadryl will be a go! Jai is funny with noises like that, motor noise isnt a problem but the higher pitch of my mothers new wizz bang washing machine sends him into a frenzy...
Good Luck
xxoo
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