No Labels, No Limits, No boxes

In this episode we listen to another mother’s journey with her son diagnosed with autism.  From his initial diagnosis to trying multiple therapies we discuss the highs and lows of her journey. Through all the challenging times, her love, compassion, and motivation for wanting her son to succeed has never changed. 

Meet Jo Daley, a mother of a child with autism. Her positive outlook on life and her persistence to try new things are the driving force behind her motto, “No Labels, No Limits, No Boxes.”  The word Autism is associated with many different stereotypes, in which Jo wants to encourage other parents to see outside of that label, set the limits high and get out of their box.

IN THIS EPISODE:

– Meet Jo Daley, her son Sean is diagnosed with autism.

– Each parent that we have on the podcast will be different because when you meet one child with autism you meet one child.  This is the same when meeting a parent or family with autism you meet one parent or family with autism.

– What we love most about Jo is her positivity, even in moments of crisis.

– In the years we have worked with Jo, we can’t remember when she has ever been negative.

– Jo talks about her journey of realizing that Sean had “different” behaviors, which led her to the diagnosis of autism.

– When she heard the word autism she cried and the thought that Sean was broken and she wanted to fix him ran through her mind.

– She researched, she felt alone, she felt scared, and helpless.

– There was no guidebook, no next steps.  There was nothing.

– Jo expressed that it felt like going down a rabbit hole of information and it gets even more confusing.

– Jo started with the DAN Diet and sensory therapy first.

– She said, “That didn’t’ help.”  It was hard. Food was not as available and it was expensive.  She would have to special order food.

– After a year and a half she was done.  Sean ate a pizza and it didn’t make a difference.

– Jo was relieved and said for many kids the diet works, but for Sean’s body and chemical make up, it just didn’t make a difference.

– She suggests that whatever you are trying to give it at least a year.  Then you know in your heart it didn’t work.  That goes for therapy or diets.

– Jo talks about all the therapies she tried: vitamins, fish oils, sensory brushing, jumping, wearing a vest, art therapy, music therapy, OT, hippo therapy, but nothing really worked.

– Jo’s mindset was that she was going to try everything and something would click.

– She kept going and trying new things and nothing was working.

– Jo felt defeated, she really didn’t know anything about autism.

– It was hard and that was the beginning of Jo’s acceptance.

– Jo had to learn how to accept autism, support Sean, and help him grow and get better because his autism wasn’t going away.

– When Sean was 4-years old Jo started talking about autism.  Before, Jo was in denial and didn’t want to talk about it or take him out.

– The first couple of years she wanted to hide and cry and was in denial and wanted to make the autism go away.

– Sean was very controlling, rigid, and had HUGE tantrums.

– Therapists would try to get him to do stuff and then say, “Well, we are done for the day.” And hand Sean off to Jo while he was having a tantrum and Jo would struggle to put him in the car.

– Felt that therapists wanted to work with more advanced kids.

– Many therapists came said, “I can’t work with your Sean.”

– Jo started ABA therapy.  The reason she didn’t do it sooner was because everyone told her no ABA, never do it, and that that was not for Sean.

– Not knowing, Jo avoided it, but it turns out it has been the best therapy for Sean.  It has been the only therapy that has worked.

– Parents want to be helpful, but sometimes what works for you may not be the case for someone else.

– Parents listening have to be open to try everything because you don’t know what will work.

– Also you have to trust your instincts and feel out the therapist because if you’re not connecting with your therapist, then that therapist is not connecting with your child.

– Jo thinks it comes down to trying. Instead of don’t; focus on the dos.

– In the world of professionals they think their method is the best method and they will talk down about other methods.  We should be supportive of all therapies because we are all complex beings and need different approaches in life.

– There’s already so much against us being in the autism community we need to come together and be supportive of each other and more positive.

– Negativity and “don’ts” can be so limiting for someone. Yes not everything is for everyone but because the disorder is so complex, you have to be willing to try everything and give it a good shot.

– And that takes a lot of investment. I want to stress the importance of investment to parents.

– I always say to parents if you’re kids aren’t doing for you what they do for me then it’s a waste of time.

– We have worked with Jo and she is committed.  Sean would not be where he is today without her commitment and work.

– Jo also expresses that amidst of everything her love for Sean doesn’t change. Jo stated, “My child is not the same, but the same love and compassion and motivation I have for him is the same.”

– Today Sean is a different child.  He is great.  He has gone from screaming tantrums and physical behaviors to using more language.  Be has become more flexible and a lot more calm.

– Jo not only attributes Sean’s success to ABA, but focusing on the things that Sean can do.  Her expectations have been set really high for him.

– Before Sean was coming from a place of extreme fear.  Now he is opening up and he wants to learn and loves to learn.  He is really proud of himself.

– Jo talks about her quote and what it means. When you first get that label you feel so limited. You think there is one experience and you think about all the stereotypes.

– Don’t put a label on it because everyone is different.

– In life when Jo tells someone, “I have a kid with autism.”  You can see reaction and the stereotypes coming, or the wheels turning because maybe they know one kid or no one with autism.

– No limits because Jo does not want to limit Sean.  She has no idea what his future holds.  She can now see the light at the end of the tunnel. She can see Sean having a job and living independently.  But most of all she just wants him to enjoy his life. That’s the bottom line, be happy and enjoy your life…

– No labels, no limits, no boxes is not treating Sean the way you would treat other children.

– And for therapist too not to place kids in boxes.  Thinking outside the box as therapist, you can have your same bag of tools but tailor it to fit the child’s needs.

– Jo’s advice for parents is to stay calm, be patient, the love is still there, and try new things.

QUOTE:

“No Labels, no limits, and no boxes.” Jo Daley