Parent of a Child with Albinism

Lyra is doing extremely well developmentally.  Right now, as far as her cognitive abilities and milestones, she seems to be at about the same level as her older brother and sister at that age.

Part of this, I’m sure is because of the extra attention she’s been given via early intervention services.  But I think another reason for her success is that we have never lowered our expectations of her just because she is visually impaired.  Sure I have worried in the past, that Lyra might not be able to do something, but that’s never stopped me from letting her try it anyway.  I don’t make excuses or use her visual impairment as a crutch and I won’t let her do it either.  That may seem harsh to some.

I’m not saying there haven’t been or never will be limitations to what she can achieve.  Sometimes we will just have to find new tools and creative techiques to enable her to overcome those challenges.  If there is something she truly CAN’T do, in time and on her own terms, she’ll figure it out.  But Lyra is far too willful to ever give up without a fight.

Don’t be afraid to expect the best from your child.  And don’t ever let anyone else tell you that you can’t or shouldn’t expect your child to be able to do something.  If they do, don’t be afraid to ask them WHY, make them back up their statement.  If they say,  “because  in the past every kid like yours couldn’t” or “this is the way it’s always been done”…I say, So What!  That’s not enough to convince me that my child won’t be able to achieve something.  You know your child better than anyone, so if you think your child CAN do something…go for it!

I’ll get off my soapbox now and end with one of my favorite quotes…and I have a lot of favorite quotes lately.

The pupil who is never required to do what he cannot do, never does what he can do. – John Stuart Mill

I don’t believe I’ve ever mentioned this on this site, but I am now a member of the NOAH Board of Directors.  As a board member, one of the projects I’ve been working on is planning a local 1-day mini-conference to be held on on August 8th at the Kansas State School for the Blind.   This would be why you haven’t seen any new posts over the last several weeks. 

The Kansas City mini-conference is the 5th in a series of regional events across North America in 2009.  For more information on other upcoming NOAH events, visit the NOAH Events page.

I have to admit, this mini-conference planning has been a lot more work than I ever realized.  Fortunately I have 2 other parents of kids with albinism and my friend Heather Kirkwood all helping out with the planning.  I think we’ve put together a great event!  We have an amazing program for the adults, including both national and local speakers presenting on  a variety of topics.

• Dr. Murray Brilliant, Ph.D- Genetics of Albinism
• Dr. David Adams, Ph.D, M.D.- Albinism Research
• Dr. Bruce Kater, OD- Albinism: Physical effects on the eye and visual function
• Mike McGowan, President of NOAH- National Institute of Health, Research Protocol
• Chantel Alberhasky, Esq.- IEP Dos and Don’ts – Before, During, and After the Meeting
• Alex Ritter, TVI- Expanded Core Curriculum
• Mike McGowan, President of NOAH- How do you trim your toenails?
• Michael Donnelly, Director of Kansas Rehabilitation Services- “Why Work?” (NEW!)
• Discussion Groups- Adults with albinism, Parents of children with albinism

More information, including the conference registration form can be found at our mini-conference information site:
KC Mini-Conference 2009