Helpful Links for SOD ONH

This blog is kind of a continuation of the previous one I did the other day, sorry this maybe alittle boring to some, hang in there with me. I am hoping to suggest some valuable ideas, information, and the links of a couple I have. Starting from the beginning, when our children are still babies, you will want to have the contact names for your local health department, the county where I am in they call it Health and Human Services. They will be able to direct you to a Birth to 3 Program in your county, they will also help you in the area of funding if your child meets the state requirements. Most counties have a Family Support Program, Katie Beckett Program, CLTS Waivers, and some other programs that will help for your baby/child again depending on age and if the meet the eligibility requirements. Make sure you keep informed on these things for the sake of your child, some of these children will need a lifetime of special care and services. We need to advocate for these kiddos!

One valuable contact is CSHCN (Children with Special Health Care Needs), if you google this, you should be able to find the contact for your area (in Wisconsin) they will be able to help you with finding different kinds of information. They also have a whole library of books,etc you can borrow from. Children's Hospital of Wisconsin may also be a good link to have, I believe it is http://www.chw.com/. There is also The Center for the Blind and Visually Impaired, you can google them and find a local contact for your area, they have been beneficial in testing Meggie's vision and making suggestions for how to work on improving her vision. Focus Families has been a good resource on finding out more about ONH / SOD ONH, you can visit their site at http://www.focusfamilies.org/, Dr. Borchart and his staff have studied ONH /SOD ONH over the years, and have many informative articles and studies posted on the site http://www.onesmallvoicefoundation.com/, Family Voices of Wisconsin is a resource you can use to find out about meetings and trainings, as well as if you need an advocate for your child, http://www.fvofwi.org/. ONH Consulting is run by Christopher Sabine, the President and Founder, who was born with ONH himself, and can consult with you or offer his services for IEP meetings, and school related issues, http://www.onhconsulting.com/ . The Child Neurology Foundation is a newer site to me, but very interesting to me, http://www.childneurologfoundation.org/.

There is just another three websites I would like to share that maybe fun (and informative), the first one is Possibility Playground in Port Washington, if you have not been there, this is a must for your children. This all inclusive playground is sure to bring a smile to your children's faces, http://www.posibilityplayground.org/. PALS stands for Parents as Leaders, this is a training group parents of children with special needs children can learn and grow, and become a better advocate for your child, www.waisman.wisc.edu/pals, and the last one is actually the magazine, Exceptional Parent, this is very informative for parents, about multiple topics, http://www.eparent.com/

I hope some of you have found this helpful, together we can learn and help make things better for more families of children with special needs.

Laughter sparks the soul

My husband has observed over the years that I am a routine person. When he first mentioned this to me, I just had to laugh and say it helps me to stay focused, but, your right. He was not criticising me, rather, just making an observation as I was working.

The other day was a great example of this. After I woke up and was ready for the day, I neatly laid out all the things needed to feed Meggie, while talking to my two older children, who were getting ready for their day. When the two older children are out the door for school, then I can focus on Meggie's schedule a little more intently.

Once she is dressed and ready, we come into the kitchen and get her seated comfortably in her throne as we call it (her wheelchair with foam princess stickers). Next we have to say good morning to meggie's best friend/yellow lab, who's name is Maddie. Now Maddie has been waiting patiently for Meggie, and will sit by her side so faithfully each morning,(unless she sneaks off for a nap and is snoring on her mat) just waiting to shower her with lots of doggie kisses. Now Meggie will return the love by patting Maddie on the head, or petting her, and occasionally, oops! poking her in the eye. This dog is sooo patient and seems to be very understanding of Meggie's visual mis calculations. What a friend !!!


It's time for breakfast, and I've neatly laid out everything we need for tube feeding and oral feeding, vitamins, H2O, and meds through the tube and if Meggie is healthy and well, we will eat the rest of the meal by mouth. Well, that particular day, she decided to grab the paper towel on the counter top, now everything water, milk, food were all set on the paper towel; when Meggie thought she was going to try a Hoodni trick. Just a note, Meggie has never watched a magic show, nor does she even know who Hoodni is. Needless to say, she pulled that paper towel at lightning speed and just then, everything on it, flew into the air and did a flip, then came crashing on the floor, clink, clank, splat. Everything landed on the floor, leaving Meggie giggling at the sounds.

"A laugh is a smile that bursts"
Mary H Waldrip

As soon as I said no, no Meggie, don't pull the paper (saying to myself, good job Einstein, your talking to your child who is fascinated with paper, loves the the sound of certain things dropping on the floor, not to mention she's done this before). I realized she missed hitting her clothes and chair with any of the mess, whoa! Then I had to laugh along with her, what a great trick Meggie!!! The mess was quickly cleaned up, and we were back to routine.