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Disability, anyone?

I'm the mom of an adorable three-year-old boy who happens to have a disability (cp). I'm also a recent graduate of an amazing disability advocacy training program called Partners In Policymaking. I'm working on a couple of disability related projects and I'm looking for other moms with kids who experience disability to chat with. Birth to five is my focus right now, however I would love to hear from moms with older kids as well. I live in Portland, Oregon and while some of the work I'm doing is specific to our school district, the big stuff will not be regional.

I'm excited to connect with moms through this forum, as I sometimes feel like the odd-mom-out in *disability world*, as I'm sure just about any mom here does when they are thrust into unknown territory whether it's early intervention or the PTA! I've also lucked into an amazing community of parent and self-advocates and would love to help other families get connected.

Projects:
1. List of top 50 books for parents of kids birth to five on general disability topics. I currently have more than fifty on the list but I'm paring it down based on availability -- what good is a title if no one can find it! I'm still seeking recommendations for the list and I would be happy to share it with anyone who's interested.
2. Website: disability mythbusting, plus information and resources for parents and other interested parties. Special focus on building support networks and community organizing. I'm interested in hearing what kind of struggles other families are facing, what resources people are looking for, etc.

If you've made it this far, thanks for your time and interest! I look forward to hearing from you.

By chloesha at 10/17/2004 - 4:52am | Welcome! | previous forum topic | next forum topic

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disabilities

Hi. I'm an expat mama, so I don't know if my experiences are relevant to your research, but just wanted to let you know you're not alone. I live in Japan with my five-year-old daughter and her twin brother and their Japanese father. My twins were born 14 weeks early and my daughter has cerebral palsy and is deaf. She was entered into an early intervention program when she was about one and she knows lots of Japanese sign language, but she doesn't really talk. I tend to waver between worrying about her language issues and worrying about her not being able to walk. She's a smart kid, but she has problems concentrating and her disabilities interfere with her learning.

I'm a writer/editor and right now I'm finishing up a big project - an anthology of literary writing on parenting disabled children. I actually have a lot of material (essays, short stories, poetry) on autistic disorders, but not so much on other disabilities. I remain open to submissions.

By gaijinmama at Thu, 10/28/2004 - 2:33pm |

hey gaijinmama - i would love

hey gaijinmama - i would love to hear more about your project. i probably can't add anything (kiddo w/autism here, too!), but keep us updated. :)

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tenderfoot zine * mamaphiles!

By tenderfoot at Thu, 10/28/2004 - 9:51pm |

Hi

Just wanted to say hello. I think that it is a great thing that you are doing. It is so nice to see empowered parents that are not intimidated by discussing and advocating for their children as well as others with disabilities. I am a hs special ed teacher at a special day school in IL. Please let me know if there is any way that I may be able to help.

By jonnysmommy at Thu, 10/28/2004 - 3:09am |

new here and also have a child w/ a disablity

Hello, My five year old son was dignosed with SID- sensory intergation disorder and also asburgers(spell?) syndrome. His IEP program has him currently in a local special ed program through the school system. Last year he was in an awesome program for preschoolers with disablities also through the school district. These last few years has definitly been a rough and tumble time for us. Although he has majorly improved this last year we still have to work with an occuptional therapist and speech therapist. since the new year I've felt my son hasn't been recieving the best amount of education as he did with the preschool program, reason i think this because the age group is kindergaren through third grade. All the children are in different areas of growth which seems to leaves the teachers sort dump struck with complications, there could also be a positive to the situation, i just can't see it yet. I have serious thoughts of homeschooling him but he really enjoys the school at the moment and seems to handle himself quite well. Your website sounds really interesting and i think its wonderful your involvement within your area.
best of wishes...keep the connection

By kaystar at Sun, 10/24/2004 - 5:06am |

hey there! glad to see you he

hey there! glad to see you here. :) i have an 8-year-old son with autism and i know a handful of other parents of kids w/disabilities (mostly autism spectrum) - i will point them in this direction. your projects sound terrific! do you have the website up yet, or are you still in the prep stage?

i'll be interested in following your progress. keep us updated!

xo
jenna

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tenderfoot zine * mamaphiles!

By tenderfoot at Sun, 10/17/2004 - 3:58pm |

Normal Is A Myth

Hi Jenna,

How exciting! My first response! After I posted it I found a spot that probably would have been better but couldn't figure out how to re-post without duplicating. Anyhow, the website is still in the planning stages, but it will be called *normal is a myth* and I should be slapping something rudimentary up soon. It will have lots of good information and resources for families, but it will also be a place where you can send your uninformed friends, family, and random intrusive strangers for some schooling on disability 101.

The book list is a project I'm doing for a local org called Family Action Coalition Team (FACT), the next step is determining where these books are available locally (public and private lending libraries) and ultimately to help different groups develop their libraries and connect parents with vital information.

The program I recently graduated from was made up of about 20 moms of kids with disabilities age one to late teens, and four adults with disabilities (self-advocates). The majority of the moms in my class were dealing with autism (Oregon has one of the highest rates of autism in the country for some unknown reason), but there was a broad spectrum of disabilities represented. What was interesting to me was that despite the fact that these were some super fierce, proactive moms, who had the wherewithal to come from all over the state for one weekend every month for nine months (and do copious amounts of homework), and regardless of how old their children were, everyone was still in the process of figuring things out and trying to get their needs met.

I will definitely keep you posted, in the meantime I'd love to hear from you and anyone else who's interested. Here are some questions?

1. What disability do you have experience with?
2. How old is your kid? Siblings?
3. If your kid is birth to pre-school age are they getting any early intervention services and in what setting? What do you think?
4. If your kid is school age, are they in public school? Inclusive classroom or special ed? How well are their needs being met at school?
5. What do you think of *full inclusion*?
6. What is your burning issue right now, in regards to your child's needs related to his or her disability?
7. What advice, information or resources can you offer to other parents?
8. What part of the country do you live in?

Thanks for your interest!
xChloesha

By chloesha at Sun, 10/17/2004 - 6:40pm |

Hey there I’m yantrarain ov

Hey there I’m yantrarain over on lj btw and my partner is saltydogsal. Anyway, we have an almost ten-year-old son who has autism and is deaf. Also our nephew who is 30 months was recently, like in the last 2 weeks, diagnosed with autism. We also have three other children – a woman child who is 14 on Saturday, a girl child who is 8, and a little boy who is six. I’m the nonbio mama, sal is the bio mama.

1. What disability do you have experience with?
Autism, deafness, sensory integration disorders.
2. How old is your kid? 10 in two weeks Siblings? 14, 8, 6
3. If your kid is birth to pre-school age are they getting any early intervention services and in what setting? What do you think? I’ll answer this with the nephew in mind because his folks are just in the getting into services part of the deal. I watched our nephew last spring and summer and we encouraged them to get him evaluated cause it was really obvious to us – no language, eye contact issues, the beginnings of aggression around communication. Anyway, I found out about a study through UW and they got in and after nine visits a handful of brain tests he was diagnosed. They didn’t make it into the UW’s group for services. They are in the control group so they will be figuring out services with the aid of a social worker that they will get through this program. This is way better than the help that was given with our son at the beginning. With autism, as with I’m sure any disability, being on the poor side or even lowerish middle class is a problem because lots of the alternative therapies are just out of reach.
4. If your kid is school age, are they in public school? Inclusive classroom or special ed? How well are their needs being met at school? Caleb is in a classroom that is serving kids with autism (there are just two other kids in his classroom). He has a one to one interpreter and there are aids in the room to help (he often needs someone to hold him still while his interpreter is signing to him). Anyway, it’s a good set up for us. The district has been a pain, but the teachers and the aids and the speech/language and Ots have all been awesome. At the very beginning of his early preschool days he was mainstreamed in a classroom for deaf kiddos and this was awful for him (this is what mainstreaming would look like for our son, a deaf classroom) he spent most of his time under the table literally. To much stim – he’s really autistic. He does eat lunch and do recess, art, and sometimes library with the typically developing set. His little bro goes to the same school.
5. What do you think of *full inclusion*? Depends on the kid, depends on the disability. Our girl child goes to a school that is serving most of the medically fragile children in the Seattle school district. She is in a program that serves the kids who test into the 98th and 99th percentile, working at least two years above grade level. Again they do the whole inclusion when it comes to p.e., recess, some art, music, lunch, school activities etc. But I can see where that might not be enough – I don’t know if those kids are getting their needs met?
6. What is your burning issue right now, in regards to your child's needs related to his or her disability? We’re at this place where he is getting big and caring for him for the rest of our lives seems overwhelming. So there is always that. And he can get very angry and frustrated and he hits things and sometimes us. And sometimes we’re just tired of cleaning up shit or watching him 24/7 to make sure he doesn’t run off or the sleep thing. Getting enough sleep and dealing with him waking up at 3:00 a.m. at least once a week gets hard. I would also say negotiating parenting him and parenting the other kids and meeting their needs is a huge challenge too. Puberty is an issue big time and refraining from public masturbation. Ahhh the life.
7. What advice, information or resources can you offer to other parents? We have gfcf advice (diet advice) for parents that we could offer, maybe the negotiating the school system thing (sal is a teacher so that helps), we are parents who have chosen drugs for our guy so there is that, we haven’t been so successful on behavioral therapies, we sign (ASL). We’re queer and that sometimes throws a cog into workings, but not so much as one might think. We struggle financially – so we know the rounds a bit.

8.What part of the country do you live in? Seattle Washington

By yantra at Wed, 10/27/2004 - 4:25pm |

i'm going to post your list o

i'm going to post your list of questions at my blog - can you PM me your email address, so that if there are any folks who don't want to post such personal info here, they'll be able to get it directly to you (since this is a very public site)? thanks! :)

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tenderfoot zine
mamaphiles!

By tenderfoot at Mon, 10/18/2004 - 2:06am |