Saturday, May 31, 2008

If Only Everyone were this Open

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?

Friday, May 23, 2008

Narrowing Down Dates!

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!

Saturday, May 10, 2008


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.

Friday, May 9, 2008

Special Announcement!

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.

Thursday, May 8, 2008

Your story is inspiring

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!

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:

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