THE BLONDE LEADING THE BLIND

If Only It Were Just Blindness

2009-10-11T16:59:00.000-07:00

So a friend sent me a message on facebook today. He told me he'd seen some special on PBS about this new technique that allows some blind people to see, at least on a minimal level. I'm sure you've all had a similar experience. I don't know about you, but as Gareth gets older, I worry less about his vision and more about the other medical conditions that he was born with. Why isn't everyone concerned about fixing those?

I know I'm not the only one here whose blind child also has either debilitating or potentially debilitating diseases that accompany his blindness. With Gareth, it's SOD. Missing a septum pallucidum isn't a big deal. Having an under-developed pituitary gland is. It puts him at higher risk for diseases like diabetes, could potentially stunt his reproductive health and will almost certainly affect his ability to grow normally. From what I understand, there could also be potential cognitive issues that arise if he doesn't receive treatment. Maybe I'm alone here, but doesn't blindness pale in comparison to these other issues?

But ironically enough, blindness is the "visible" part of his disease. It's the part that everyone else can see when they meet Gareth. He still determinedly rocks his head back and forth. He still walks into table edges if you don't warn him in time. He stumbles over toys in front of him. Daycare workers, family members and your average Jane on the street can see these symptoms. And they think they can potentially relate to them as well. They think, "Gee. That would suck to live in the dark all the time," or "oh, the poor blind child. I bet he's gonna be another Stevie Wonder when he grows up. I'll give him free music lessons. To hell with his sighted sibling." And so they spend all their pity and condescension on fixing that.

But they don't see the cysts in his brain. They don't see his almost non-existent pituitary gland. They don't see him two years down the road when he's receiving hormone shots everyday of his life until he hits a potentially induced puberty. And frankly, next to those worries, I'm not so much worried about the fact that he can't see. That's normal for Gareth. As far as he's concerned, blindness is business as usual. Not that there won't be the occasional insensitive playground bully. Not that he won't face some discrimination. I do realize that it's going to be something he'll have to deal with. But being unhealthy isn't normal for anyone. When your body starts to rebel against what you think it ought to do, you're going to notice--regardless of whether you can see or not.

And who are we kidding? The diseases that accompany most of our children's blindness are what's going to cause our families the most worry financially as well. Luckily most of us are covered by some kind of state program or other. But we all know that given a sudden rise in income, or an improvement in functionality, our children could lose that coverage and then who's going to pay for that? I admit this keeps me up some nights.

But again, these are the parts of our children's conditions that people don't see. And so they don't send us news about stem-cell research regarding gland re-building, or fighting blood related or auto-immune disorders. We get access to that information through our service coordinators, doctors, etc. But for me at least, it sometimes gets irritating to have family members and friends send me stuff regarding only the blindness, wanting to fix my poor broken child who, if they really took a look, is actually a pretty normal kid overall, but who will also face some serious health challenges as he ages.

Once again, what's it like for you guys? How do you deal?

BE THERE OR BE SQUARE!

2009-06-27T14:33:00.000-07:00

DON'T FORGET!!!!!

PICNIC TODAY:COMMUNITY PARK (BY HOME DEPOT)
TIME: 5:00 P.M.

BRING YOUR FAVORITE TREAT/SALAD TO SHARE!

HOPE TO SEE EVERYONE THERE!

PICNIC POLL!

2009-06-01T18:56:00.000-07:00

PICNIC!

What day is good for your family? June 20th or 27th? Let me know!

AMBER
:P

Um, repeat the question, pls?

2009-05-14T15:40:00.000-07:00

We had a transition meeting for Gareth this morning. I was reminded once again how much I have to learn about this whole disabled child spiel.
I guess I don't really trust myself when it comes to my kids and what's good for them. When the early childhood development specialist asked me for information regarding Gareth's needs, I was tongue-tied. My first thought was, "I don't know! That's why I'm here!"
I know a lot about Gareth's personality, his likes and dislikes etc. And I know that he has limitations (duh). But I don't know what to do to foster growth in those areas. I admit that I rely heavily on the information I get from his therapists and vision teacher. They're so much more familiar with things to look out for, tendencies, red flags, etc. than I am. For example, before we had Gareth diagnosed, he was already rocking at six months. Without his vision teacher, I wouldn't have known that was a problem (or at least not as soon as I did. I just thought it was one of his little idiosyncrasies).
Anyway, I guess what I'm saying is that I still feel like I'm floundering sometimes. I still wonder if I'll ever get good enough at this parenting a disabled child thing to be ahead of the game and have suggestions for his development. I appreciate that Gareth's doctors and coordinators trust me so much. But I'd be lost without them. Seriously, folks, I consider you guys to be the experts. Would you hold my hand, please (believe it or not, I'm a relatively independent human otherwise ;)?

Easter Egg Hunt Changes

2009-04-09T14:08:00.000-07:00

Here is the latest news from James.... they have moved the event to Freeman Park near the Pavilion or Band Shell. It will still be at 11:00 am and include both the VI kids and their young siblings.

For more info or directions please call James (681-6666) e-mail at James.Casper@qwest or myself 589-2032. Hope to see you there!

Kathryn

P.S. - Thanks for those who have responded to let me know they have recieved this updated info!

EASTER EGG HUNT-HOW FUN!!!

2009-04-04T13:43:00.000-07:00

QUEST IS MAKING THIS HAPPEN FOR US! HOW NICE HUH? PLEASE TRY TO COME SO THAT THEY CAN SEE THE NEED FOR ACTIVITIES FOR OUR KIDS!!!! I have a feeling that if there is a good turnout they might do more things for the VI kids in the future!
thanks, see ya there!

Amber

Here is the info.

We will be hosting an auditory Easter egg hunt at Tautphaus Park in Idaho Falls. It will be held on Saturday April, 11th at 11am at Lilac Circle in the Park. We encourage you to bring your whole family and we will also have an Easter egg hunt for siblings who are not visually impaired.
Please call James at 208-681-6666 or use e-mail at James.Casper@qwest.com if you have any questions or if you need directions to get to the park.

AMEN!

2008-08-07T19:39:00.000-07:00

Lessie-
It is so funny you mention this! I am living it right now! I have finally come to terms with the fact this summer that nobody should compare kids to each other! I am always thinking that "Averi isn't doing this or that like so and so's kid" and I am really sick of therapists and others telling me how they think she isn't caught up to her age group or that she doesn't act quite normal, and that maybe something may be wrong with her! DUH! She was in a coma for 5 months and lost her vision for heavens sake! Can you really seem normal after that? I am going to just plug my ears and run the other way screaming! I have gotten ulcers from people suggesting that Averi has something wired wrong in her brain or that she may be Autistic! Who cares!?! I finally went to a specialist and my doctor and asked them if they think she has something wrong with her brain and they both told me NO! Hallelujah!

Finally, I have started using the term "that's normal for Averi"! Yes, she still wears diapers and eats baby food and she is 6 years old which is very abnormal, but it is "normal for Averi"! The good thing is that seeing "lines on the sidewalk", spinning in circles, playing piano, riding the bus, going to school, identifying people by their fingernails, smelling everyone, listening to music, jumping on the trampoline, playing with siblings, etc. is normal for my "blind" child! So whatever! There are a lot of "not normal" people in this world, and being "blind" is pretty good compared to some things I've seen out there. And the bonus is that she won't have to see it! She won't have to see a lot of crap that I wish I could block out of my mind!

Lastly, I know a lot of blind people, and they give me hope! I know that all of these kids have the potential to do so much! The only restriction I can think of is driving! And, we can find ways around that-no problem! I think the more awareness the public has, the more "normal" being "blind" will seem. That is part of our responsibility as parents! I am making it my goal to not be worried and embarrassed and to let others learn from my beautiful, wonderful, "normal" child!

P.S.-It gets harder as they get older, sorry! I just wanted to warn you now so you know! But, that is my new "normal", we will just keep adjusting.

Normal

2008-07-30T15:13:00.001-07:00

Have you noticed that since having a visually impaired child your concept of "normal", standardization, etc. gets shaken up? I was discussing education with someone the other day and our conversation sort of concerned me. He was talking about how school was for him in his native China. He said in China, if you don't fit the standardized educational system, then you simply don't pursue certain careers. He gave an example of one of his students whose mother was worried about her daughter. He said the woman felt like her daughter hadn't met a teacher that was able to connect well with her and present the information to her in a way that she could comprehend. He said, "The teachers aren't the problem, your daughter is the problem. She needs to learn to catch up with the group."

Now, he obviously knows the child in question better than I do. But still, his insistence that she fit a socially constructed mold bothered me. Depending on our children's level of impairments, they will fit better or worse into our society's educational mold. Now I know that the ADA works tirelessly to help them accommodate, but I worry that attitudes such as the above will affect how well our children are accepted in the mainstream. My son, for example, will not learn the same way other children do. He simply can't. However, cognitively, he seems to be capable of quite a bit. Why should his visual impairment be used as an excuse to keep him from developing his mental capacity to the best extent possible? Do you see my concern?

Something that I've had to face, as I raise my child, is that while he's normal in a lot of ways, id est, he needs love, care, interaction, stimulation, etc., he's simply not normal enough in his mechanical abilities. The vast majority of humanity opperates on a visual assumption. We vary grately in the way we see the world, but see it we do. And our entire system is built around this.

Maybe you guys are thinking, "Yeah, nice that you could finally join us, Lessie." But for me, the implications of this are only now beginning to dawn on me. Part of me understands, now, why there are organizations out there that advocate so passionately for a rewriting of society so that it fits more closely with "normal" from a visually impaired perspective.

Am I making sense? My son's way of existing will always be normal to him. But to everyone else, he will be "other" in certain ways. I worry about our society's ability to accept that even though he's different, he's capable and worth the accomodations.

The Brown Family

2008-07-17T21:57:00.001-07:00

Here we are! Just thought I'd post this to give you a visual.

P.S.

2008-06-19T21:50:00.000-07:00

I changed up the blog a little to hopefully make it so more people can view and post on it from our ISDB group. I am sending e-mails when we post something new to some of the people on my e-mail list (If you don't want this, e-mail me and I will remove you). I don't know how to test it out. I just hope this makes it more user friendly! We'll see right?

The Picnic Was Awesome!

2008-06-19T12:03:00.000-07:00

Horray! The picnic was so fun and we had tons of people! I am so happy so many people came! It makes it worth my time in planning. I of course didn't get to take as many pictures or talk to as many people as I would have liked to! I was sick that night, so I wasn't as social as usual!

I also forgot to take pictures of everyone, but I took some. I will try to take more at a later date! If you want to load some here it would be awesome to see the kids/families and faces with names! I have a goal to someday have a monthly playdate, but I am not so organized. Someday...

Anyway, here are the pictures, it was fun to see new kids and meet new people! I hope you all had a good experience there.

(L)Elisa with daughter Lucy,(R) Lessie with son Gareth

Daisy-Sorry-I forgot her mom's name!

Lucy

Averi

See ya!

Amber

Picnic Tonight!

2008-06-17T14:48:00.000-07:00

Picnic tonight!

I am totally bringing my camera so we can post some pictures here! This way we can actually put names with faces and all that stuff.

OFFICIAL PICNIC ANNOUNCEMENT!!!!!

2008-06-03T09:41:00.000-07:00

picnic:

WHEN: June 17, 2008

WHERE: Tautphus Park Equal access playground shelter

TIME: 5:30

If your last name starts with A-M bring a dessert, N-Z bring a salad or potluck dish!

PLEASE COME IF YOU CAN! IT IS AWESOME TO MEET EVERYONE!

R.S.V.P. to me 552-2219 (Amber) or Kathryn 589-2032 by June 16th so we know how much main course and drinks to plan for.

If Only Everyone were this Open

2008-05-31T09:57:00.000-07:00

Well, it was voting time last week. So like a good citizen, I got me down to my precinct polling place and cast a vote. Since hubby was working late (as usual), I was on my own with the two boys. I carried Gareth in his carrier and Theron tagged along behind us. One of the gentlemen helping out new-comers to the area (me) register, told me that I could leave Gareth with him when I went to vote rather than have to hall him over to the booths. Since it was within sight distance, I decided it was a good idea and happily left him there. While I was choosing my candidates, I could hear Gareth giggling and squealing and I was glad that he was having a good time. When I finished, I went back to where Gareth and the man were sitting, thanked him for his kindness and got ready to leave (Theron, meanwhile, had been roaming the area and had finally come back to where we were).
The man said, "It was no problem. I like kids . . . but can I ask you a question?"
"Sure," I said, pretty sure I knew what was coming and relieved that he was going to ask.
"Is he blind?" the man asked.
"Yes," I said. The man said something about how he had thought so from the way Gareth behaved while they were playing.

How is it for you guys? For me, it was such a relief to have someone just say something rather than make Gareth's blindness the elephant in the room. I always waffle back and forth about whether to tell folks or not. My husband is in the let-them-figure- it-out-for-themselves camp. I usually lean more to just telling them straight out when they keep trying unsuccessfully to make eye contact with him. The other thing I struggle with is how to introduce my sighted child. When I'm telling people about my kids, I usually mention Gareth's blindness and then struggle with finding something interesting to mention about Theron. The reverse however also happens for me. I find myself telling people about Gareth's blindness and realizing that I'm making that out to be his defining feature--as if he doesn't have other things about him that are much more indicative of who he is. He's very demanding, whereas Theron is laid back. Gareth is curious (as is Theron) but much more cautious where Theron is a bull in a china cabinet. Gareth is much more physically affectionate. Theron is more quality time oriented. Do you guys notice this happening as well, or have you figured out new ways to approach it? How do you deal?

Narrowing Down Dates!

2008-05-23T19:25:00.000-07:00

Hi,
Kathryn and I are slowly trying to narrow down dates for this picnic. We are leaning towards June 17th. This is a Tuesday night. I will get out more info. ASAP! I am so glad to see we have this many people who have joined us! Yeah!

Averi officially finished preschool yesterday! I kinda freaked out! She is 5 1/2 and went to preschool for 3 years. The progress is slow, especially her social skills. She is still really behind developmentally, but we are making progress. We still have many eating problems and potty training has been on my "dread list" for a long time now (Averi is a natural born nudist, I can't keep her in clothes!). I have made summer goals to conquer these problems! She still goes to lots of therapy, so this should help. I am about 85% of the problem because I don't like to, or am too tired/lazy to put in the necessary time to help her. I need therapy!

I am also learning how important it is to take time for myself! I take Averi to a stroller class 3 times a week. The class has been good for me and her; she gets out of the house and I get to burn off some stress and tension. I would like to hear what everyone else does for themselves too!

Peace Out!
Amber

Anxiety

2008-05-10T21:11:00.000-07:00

I have two boys. My oldest son, Theron, is four years. My youngest son, Gareth, is sixteen months. He has a condition called Optic Nerve Hypoplasia and a condition called Septo Optic Dysplasia. Can I just say that it was such an odd experience, when even at a month and half old, I could tell that something was wrong with his eyes? I knew it was true, but didn't want it to be true. I kept telling myself that blindness wasn't so bad, that there are worse disabilities to have, that if he was really blind, he'd still be able to live a functional life. But when we finally saw an ophthalmologist when he was six months, we were heart broken to have it confirmed.

I don't know how to express how overwhelming it is to be the parent of a blind child, how painful it is to hear people tell you how special you must be to have received such a child when you know so deeply your own inadequacies--to feel the pressure that such statements put on you to do a stellar job of raising your child. People keep telling me that I'm the perfect mother to have such a child, but only I know how dark my parenting days get sometimes. Only I know how much I struggle doing all the different activities I'm supposed to do with Gareth. They couldn't be more wrong when they say things like that. I was just a normal Jane, doin' my thing when I had Gareth. As Amber intimated, I was having a hard enough time with my sighted child--much less raising a visually impaired child as well.

To add to my anxiety, I know how important it is to do things right--to balance his needs with the needs of my older son who is normal and to make sure I explain enough to this little guy so that he makes those connections that are second nature to my sighted child. And yet I feel like most days are abject failures--days when I get so scared and overwhelmed that I go into creative avoidance mode so that I don't have to deal with all this. I love my boys more than I ever thought possible, and for the most part, we have a good time. It's those other days generate posts like this and make forums like this so important. I'm excited to get to know every one--people that can really know how scary our children's disabilities can be and yet how exciting their successes are also.

Special Announcement!

2008-05-09T07:46:00.000-07:00

O.K., here is our first announcement! Kathryn wants to have a parent group picnic in June. We are thinking about the 2nd week of June. We would like to maybe try a weeknight/early evening this time. I know weekends are busy this time of year, so we thought a weeknight may be better. Let me know what works best for you, I would love input.

Let's have it at the equal access playground, I will try to reserve that shelter. I think that would be so fun for all of the kids. This is a awesome opportunity to meet everyone too! We haven't had good turnout at the past couple of picnics (hint, hint), so I am trying hard to make us all excited to do this. It is actually really fun once you get there and get talking! I have really benefited from meeting other families in the past.

Your story is inspiring

2008-05-08T21:04:00.000-07:00

Thank you James and Amber for sharing your story. Sometimes when your child is diagnosed with medical conditions, it is comforting to know that there are people like you who inspire us all. I have learned as a grandmother who has a grandson with cortical vision impairment, heart problems, and developmental delays requiring PT, OT, Vision, Chiropractic Atlas Adjustments, and Speech Therapy, that it is important to pray, hope for the best, and never give up. My grandson has never been officially diagnosed with anything yet, and we have made so many trips to SLC it sometimes feels like a nightmare. The Genetics Doctor finally decided to give the baby a "test rest" so he isn't prodded and poked for 6 months and then will see what develops. Keeping a smile on your face is so important for the sake of you and your child. I am also a Special Education Teacher and still I wasn't prepared to face the truth. I was constantly hoping that things would be ok. !8 months later, my grandson has made gains, but still is behind. I hope and pray that he will one day walk and talk, but if not, he knows that I will be there to carry him just as Jesus carries me.

The Blind Leading the Blind!

2008-05-08T12:10:00.000-07:00

This is my cute husband James and my kids!

This is me!

These are my kids! L to R=Taylor (7) Averi (5), and Christian (9). Averi is visually impaired because of a condition called Osteopetrosis. I have more about it on my family blog:

amberandjameswilliams.blogspot.com.

O.K., so don't get offended by my blog title! I wanted to name it The Blind Leading the Blind, but that was already taken! I instead thought of myself (being the blonde I am) and decided that being a blonde leading the blind can be worse than being the blind leading the blind.

As a parent we aren't given special training on raising children, it is a hard job! Being described as the blind leading the blind seems pretty accurate. As parents of visually impaired children we are literally responsible to lead the blind-"blindly", so the phrase seems to fit perfectly!

I say this because for me it seems like most of the time I have no clue what to do or how to do it! I depend on so much help and guidance from other people that I feel like I am blind myself. I have no idea how to raise a blind child! I have 2 older children who have no disabilities and I have a hard enough time raising them!

I really love talking to other parents of visually impaired children to hear their stories! I need to have the reassurance that I am not alone in the world! I love to hear the little victories and the struggles that other children and parents have. It is nice to kind of compare notes/ideas and hear that other people are experiencing the same things you are. I love to share stories and tips with others and ask advice of those who are ahead of me.

Please join in and let this become a great resource of stress relief and information! It may be slow at first, but if we spread the word, it could be awesome!

Amber Williams