Saturday, March 20, 2010


This week even though busy was so refreshing!

Why? Well that can be summed up in one word really and that word is....


I need support. Every time I am with parents of special needs kids I feel on top of the world. Every time I get a word of encouragement from anyone I feel revived. This journey is hard. Life is hard period but special needs has its very own set of twists and turns.

If you really sit and think about it every needs a support system. If you are a collage student you find others that are studying what you are for support. If you are a parent with babies and toddlers to find other mommies with children the same age to talk about potty training, breastfeeding, preschool, lack of sleep, and the list goes on. If you like to hunt you have hunting buddies. If you have twins you search out other parents that also have twins. If you are in the working class you have colleges.........

Well, being a parent of a special needs child is no different. The support is a bit harder to accomplish however because there are a lot less people in this world that parent a special needs child. That is a good thing unless you are a parent of one of these incredible kids/adults.

This is where for me, social networking has come is very handy. I can not tell you how many amazing special needs mommies and daddies I have met. Parents that understand my joy, tears, and everything in between.

Thursday when we gathered together for one last time, to document our special bond in picture form, we laughed and cried. When one mom shared with us about a not so great doctors appointment. News that could involve MAJOR surgery on more then one front for her not yet 3 year old child......WE CRIED! WE HUGGED! WE COULD RELATE!

This is so important.

This is support! The same kind that all of us need!

Now, not to leave those of you that do not live in the world of special needs, we NEED you too! We need your encouragement and compassion...not pitty. We need to know that you care. We need to know that you see our kids as beautiful children and not just a diagnosis. We need you to ask if you have questions and not just stare. We need you to know that our kids understand more then the world give them credit for. You are not off the hook.... WE NEED YOU TOO!

With that said I wanted to leave some really great support links to sites that special parents can be found. was one of the first sites that I stumbled across when I was trying to decided if the answer to Makenzie vomiting and FTT would be found in the FUNDO. This site is set up as a message board with tons of questions, answers, and ideas on things like tube feeding, pumps, motility, therapies, seizures, food aversions,mito disorders, TPN, school issues, Wheelchairs and other DME, and much more! This site was and is a great place to connect!

Parent to Parent USA is also in many states. It is set up as a list serve and is state wide. Again lots of questions,answers, and ideas. The cool thing about Parent to Parent USA is that you sign up in your state. So questions about state programs, school districts, EI, and any state specific information is more easily addressed by others that live near you. I have also met a few really great people through Parent to Parent USA, Jenny happens to be one of these!

Family Voices is a great advocacy group.

"Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care"

The Arc of the United States is also a great advocacy group. I personally have consulted with them several time in regards to Makenzie and her school issues.

"The Arc’s vision is that every individual and family affected by intellectual disability in the United States has access to the information, advocacy, and skills they need to participate as active citizens of our democracy and active members of their community. We work to ensure that people with intellectual and developmental disabilities and their families have the supports they need to live an ordinary, decent American life"

And last but not certainly not least.....

Exceptional Family TV. I am so excited for the launch of this weekly web series starting in MAY! With tons of interactive features and ways to get involved.

"Come join families from around the world that are raising children with special needs as we share, inform,encourage, educate, laugh and cry together.Bottom line, a place you can genuinely call home and just be yourself. No need to justify why you quietly battle feelings of anger, resentment and all the guilt that goes with it. We all have those feelings, and it does NOT mean you do not love your child. It means that you are human." Go check them out! This is going to be amazing!

We are leaving in less then 12 hours to head to The ABM Center! Please pray for safety and healing for Makenzie! Pray for the boys while I am not here! Pray for them to also have a great, safe week with grandma!

Believe...Prayer Works!


Related Posts with Thumbnails