I dont know about the other families out there but as a single working parent I am over the income limit for any type of support for my special needs child! I am middle class and really dont make enough to cover living expenses and medical services unpaid by insurance! I have been fighting for feeding supplies to be paid for by medecaid, but with no luck have been paying out of pocket for most! In this system I am lost in I will never get ahead! Does anyone have any ideas on how to get feeding supplies covered or know of places to purchase them at discounted prices???

Natalie, have you tried children with specialty needs...where are you from? Does your child get SSI, if so, they should get medicaid as well, and they should cover the cost. good luck, anna

Support is not easily found. Especially for single parents who must work, keep the home up, do normal shopping, run errands, and the million other things families do to maintain a normal existance. Yes, there is Title XIX, but when one goes 8 years without any services--just how effective is that program? The State may not be the culpret here, but they do provide more support for the agencies than they do for the waiver client. Single parent homes should be provided with extra help.

Someone stopped by my son's blog and shared the site from the Oley Foudnation - it is a website that allows you to sell and buy feeding supplies - I looked at it and looks like they have a wonderful inventory. My son is on Medicare and they only pay for two feeding tubes and so I bought 40 of them for only $50 from ebay - ours tend to break at the tip - due to the syringe - so I want to be certain that we have a back up at home - since one of the tubes must be sent to daycare - check the site out - it looks promising.

I am so greatful to find this website. I have been feeling lost and in need of support. Ironic thing is that I work closely with families who have children with disabilities, but often feel isolated. The families I know are wonderful and each of their stories are unique. However most of them have children with autism and at times I feel alone on my journey. My son is 3 years old and has a metabolic disorder. It has affected him globally and he is on the ketogenic diet. I often think of the things I have to be greatful for and that is what gets me through. I do have those times when I close my eyes and just cry. I wish he wasn't so dependent on me and that he could be happy. All of my feelings blend together and are made up of fear, resentment, joy, sadness and guilt.

I am in need of creative ways to bond with him, play and interact. He cries a lot and is non ambulatory. He doesn't use his hands and doesn't talk. What have you done with your kiddos? Thanks.

Nice to see this here. I have taught special education for 10 years and am now (just as of 6 mos ago) also the parent of a child with a disability (Prader-Willi Syndrome). This is a wonderful website. If I can be of any help please let me know.
Jessie-You should look at the website for Abilitations and also for www.specialneedstoys.com for toys to interact with you son. Be sure to check with any therapists and/or doctors if you are concerned about his safety with anything.

I am far from a mother, but mothers may find my ebook inspiring as it is the story of a young widow raising her little boy with polio.

Too Early for Flowers is available only online.

I hope you find it practical and inspiring.