[blparent] Introduction

[Heather Bird]

Hello. My name is Heather and I am the middle generation of a three 
generation blind family. My mother is blind and my father sighted. My 
husband is sighted and my two sons, ages 3 and 8 are also blind. The 
four of us have LCA, a rare autosomel dominant form, as LCA is typically 
recessive.


My older son Jeremy is about to turn 9 in August, and he is my extreme 
child. He is on the autism spectrum and he never acts his age. He either 
acts far more considerate and mature than his peers, like a 12 year old, 
or he acts incredibly immature and difficult like a 2 year old. So, Its 
like having my 3 year old son Caleb, and two other children, a 2 year 
old and a 12 year old with some weird custody arrangement where the 2 
year old and the 12 year old are never in my home at the same time. 
*smile* Jeremy is extremely bright, but has poor planning skills and is 
often seriously lacking in basic common sense. His reading comprehension 
is two to four grade levels above, but his actual reading is about one 
grade level behind his peers. He can do mental math one or two grade 
levels ahead of his class mates, but getting him to sit down and write 
out his work on the Braille writer for math is like wrestling a rabid, 
really pissed off squirrel. His primary interests are space flight/NASA 
history, Mine craft, collecting figit spinners, amusement park rides, 
science and watching other people play various games on YouTube. Like 
his father, Jeremy cannot carry a tune in a bucket, has an aptitude for 
math and technology and a fondness for Bruce Coville books and doing 
Lego models. Jeremy is also my child of contradictions. He wasn't fully 
potty trained until around age 4, we are talking about "sit on the 
plastic froggy potty and I'll give you an M and M and a penny to put in 
your toilet piggy bank that you flush to get the coin to go down into 
the base, and please for God's sake can we get you out of cloth training 
pants by the start of Kindergarten?" But, at age 3 he could take the old 
empty toilet paper cardboard tube off of the holder and install a new 
role for me. He can read children's books on difficult topics like the 
holocaust or the underground railroad, and have meaningful conversations 
about their content, but if he drops half of a cheep, crappy 20 cent 
freeze pop, it is the same bursting into tiers and carrying on like a 
wounded animal that you would expect to accompany something serious like 
his cat dying.


My younger son Caleb is 3. He is my easy going sweet. He is quite smart, 
but rarely brilliant. He has tantrums on occasion, but he rarely 
misbehaves. He's very dependable, for a 3 year old, and a very amusing, 
lovable kiddo. If he is on the spectrum, it is much less significant 
than with Jeremy, as he is pretty typical in most ways. He loves music, 
car rides, shapes, visiting his nana and his grammie, and scented 
products. The only sensory things we have really seen with him is that 
he screams his head off as if we've poured sulfuric acid on him whenever 
Ilsa licks him, and he is not thrilled about having messy things on his 
hands or face, although he is able to cope if I give him a cloth napkin 
to use whenever he gets something on his fingers or face. He has done 
everything either on time with or slightly behind his peers, whereas 
Jeremy did just about everything way ahead of or way behind his peers. I 
see more of myself in Jeremy, but I have an easier time with Caleb. I 
love them both dearly, but, honestly? I like Caleb better. On a 
day-to-day basis, I far prefer spending time with Caleb. Jeremy pushes 
my buttons constantly, although on the rare occasions when Jeremy can 
focus and control his behavior, he is responsible for the majority of 
the extraordinary, epic or memorable moments in our household. Caleb 
keeps me sane and Jeremy helps me grow as a person, and both are very 
valuable aspects of my life. We want to have one more child, and we are 
hoping for a girl, but we are stopping at three even if the next one is 
a boy. Although, with three little boys, my husband, with his male 
service dog and Jeremy's male cat, I might have to go and spend some 
time with the little girls of friends to keep from being overwhelmed 
with testosterone. At least Ilsa is on the girl team with me. *smile*


My husband is sighted and he is one of the few sighted people that I 
feel really "gets it" about the blindness thing. He is an Iraq War 
veteran of the United States Marine Corps. He just graduated with an 
under graduate degree in computer science and is looking for a job. He 
has moderate to severe PTSD and is a service dog handler. His service 
dog is a smoothe coat collie named Dante, who we owner trained.


We also have a grey and black Maine Coon cat named Houston, who is 
Jeremy's pet. One of my catch phrases regarding the cat, as I fish him 
out from under something, extricate him from a tight spot or shoe him 
away from something he's stolen is "Houston, you are a problem."


I have a black and tan German Shepherd Seeing Eye dog named Ilsa. She is 
still quite young as I got her in September of 2016 and she wasn't yet 
two at that time. I have previously had a yellow lab from GEB, two GSDs 
from Fidelco and one GSD from TSE prior to Ilsa.


I am the chapter president of our local Rochester chapter of the 
National Federation of the Blind of New York. My husband, Jim is a board 
member, and my mother, Bernice, who is also blind is our secretary. I am 
also the vice president of the New York Associations of Guide Dog Users. 
Jim and I are members of IAADP and Jim is a member of the VFW, the DAV, 
and also of NOPBC. He might be joining the blind veterans division as 
well. I am an attachment parent, in most respects and a green parent 
whenever I can be. Our chapter is very new and very small, but is 
growing rapidly. Wee were chartered with 7 members in October of 2016 
and we now have 15 members, and of those 15, 5 of them are blind 
parents, my mom, my self, a single blind mom and a blind couple.


It will be great to get to know all of you here on list.

Have a great Sunday,

Heather and family,