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Roundtable Recap: Advocating for a Child with Special Needs

Continuing with A4A month, Monday’s HA Roundtable focused on parenting and caregiving for a special needs child. The role that a parent or caregiver has with a special needs child is a very complex one. During Monday’s roundtable, Michele Julis-Gianetti, Adrienne Bashista (@easytolovebut and @adriennegail) and Caroline McGraw (@awishcomeclear) shared their life, experiences and helpful tips in regards to caring for their loved ones with special needs. Below are some highlights that I would like to share. The discussion was definitely a compelling and interesting chat!

 

Michele – http://www.michelegianetti.com/

Caroline – http://awishcomeclear.com/ @awishcomeclear

Adrienne – http://www.easytolovebut.com/ @adriennegail

 

 

 

 

The challenges that a caregiver faces while caring for special needs child is widespread. Making sure that you are planning ahead is important to every caregiver and to focus on the positives and the growth. Lastly, it is important to take care of yourself!

Michele– To be two steps ahead in my thinking and of [my] planning… to keep the growing going.

Adrienne– To divorce ourselves from what we know are manifestations of his disabilities versus taking it personally… and maintaining that balance and also taking care of yourself.

Caroline– The biggest challenge is being able to separate the behavior from the person.

 

Going online and finding others to relate to can help a caregiver get a better sense of their situation and can be a useful tool for caregivers to use in their personal caregiving lives. It is important for a caregiver to create a community instead of feeling alone.


How does advocating online help you as a caregiver?

Michele– A chance to share and to be apart of something that I know I would have loved to have had.

Adrienne– When you have a child with special needs, it is really hard to find people who you think will understand… social media has allowed me to tap into other people who have kids who are going through the same things and I am really happy to be connected to people who value that and help each other in that way.

Caroline– sitting down and writing about to other people, forces us to view the bigger picture and see that this is a real struggle. And to see, that maybe what I am going through here is something I have to give to someone else and something I can offer.

 

Challenges unique to special needs

Michele– To wake up and know you need to be ready for the day, and know that if you plan a day, you have to make adjustments…it is the constant mental thought.

Adrienne– From thinking that he was doing it on purpose, or that he would grow out of it, or if we can just find the right book, find the right sticker charts, do the right thing, we can get him to behave the way we wanted him to behave. To shift our minds to believe that it is nothing we can really do, his brain doesn’t work the way we want it to work.

 

Something that you wish people knew about parenting kids with special needs

Michele– We would give everything we have, own, and desire in life, to have our child have a typical life that others might simply take for granted.

Adrienne– There is a public perception of special needs parents of that we are saintly wonderful people. Number one, we are people.

 

A care-team is an important an important part of treating a child with special needs.

Adrienne– We had a family doctor, psychiatrist, neuropyhscologist, school personnel, speech therapist, regular therapist, things like that. But, since his diagnoses which happened a little under a year ago, we have actually shrunk the core group of people a great deal and this is to recognize the permanent nature of his brain damage.

 

Talking to your child about their special needs can be tricky but rewarding.

Michele– We’ve explained it to her and I think we are better for the explanation.

Adrienne– We have definitely talked to him about his special needs… he is a lot more accepting about the limitations we placed on him based on his own self knowledge…Overtime he has become self aware; knowing what he can and can not do.

Caroline– [We] try to take things that he can relate to, and that he cares about, and sort of transfer those… to try to control is behavior even more.

 

Transitioning care for when their child is reaching adulthood

Michele– Right now our beginning of transitioning is to cultivate her interest and to see what we can do with those and then look into the future. As opposed to whatever path might be the easy path.

Adrienne– Moving from the idea from him growing up to be an independent adult to growing up to be an interdependent adult.

Caroline– When Willy was born 25 years ago, none of this stuff existed [in regards to services for special needs children] so, there is reasons to be optimistic. But it can be daunting to look into that unknown future.

 

Tips and Advice for other parents with children with special needs.

MicheleListen to your heart.

Adrienne– For people to know that they are not alone. It is very common to feel isolated and alone but in fact there are million, billions of people experiencing similar emotions… so it is very very helpful to make a connection with other people.

Caroline– I find it really important to spend time with other families and other kids with special needs and just to do that depersonalizing that we were talking about earlier… Second thing is to think about the story you are writing as a family. And to think that yes, we are going to have really tough days and we are going to face these challenges, but overall what do we want our home too look like and how do we want our home to feel.

 

I would like to thank Michele, Adrienne, and Caroline so much for participating in Monday’s roundtable discussion on parenting a child with special needs. It was really interesting and eye-opening to listen to them each open up about their personal lives, and offer some great tips and advice to other advocates. Even though each had distinct stories, they all shared the common role as advocates for their loved one, and each appreciated the distinct online community that they are a part of.

 

 

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