The Continuation of Self

The Continuation of Self

When my son was diagnosed with autism, I knew that working in a lab as a geneticist or as a professor wouldn’t be in the cards for a while, but I was getting anxious, depressed, quiet.

 I had just received my Master of Science degree from Arizona State University and now that diploma sat on the floor of my bedroom, in a frame, with nowhere to put it.

 I began to buy and read as many STEM picture books as I could get my hands on, and then it occurred to me- I have something to offer in this space.

 In my youth I love to write poetry and I decided I would write a STEM picture book series in verse- I mean how hard could that be…

 Well…

Let me tell you…

It… is… HARD!

 Not only are you keeping track of the rhyme and meter, but you are also trying to make sure that you don’t have forced rhymes, or near rhymes. You need to make sure that the scientific concepts are correct and relayed in a way that is fun and engaging to your audience. You have to make sure that your story has an arc, that it fits on 26-page spreads, and that everything word has a purpose.

 Then you have to find a publisher who will take your work and put it out into the world.

 Years were spent querying publishers and agents. I had interest from a few, but no takers. For many I was writing in a very difficult space- a narrative non-fiction STEM picture book… in rhyme. This meant that it would be hard to translate into multiple languages, it didn’t exactly fit in the non-fiction space, and it didn’t really fit as a traditional picture book.

 After three years of taking classes, perfecting my story arc, and perfecting my rhyme and meter, I ultimately decided to self-publish my Ava series… now the REALLY, REALLY hard part – finding an illustrator to bring my words to life.

One day I was on Facebook cruising and autism mom site and there they were. PECS pictures a mom made in the image of her child.

 I wrote to her immediately- have you ever illustrated picture books?

 Nothing… for a month.

 Then she wrote back, we met, we agreed to work together.

 Karlie’s artwork is absolutely amazing. Her illustrations have brought life to my text. This is her first time she has illustrated a picture book and every time I received a spread from her I was blown away by the quality of her work. I will always be so thankful for her.

 In this first picture book you will get to know Ava- a half-Hispanic, half-Caucasian girl who never feels like she fits in anywhere. On Picture Day she is determined to fit in when… static electricity strikes! Ava must convince her friends to become ecstatic about static to create an epic class photo. She finds a way to fit in by bringing her friends into her world of play and exploration.

 Throughout the book the kids will learn about the scientific method, atoms, and static electricity. At the end of the book parents will find discussion questions and an experiment they can do with their child.

 My hope with this book is to spread my love of science, exploration, and importance of being uniquely you and inviting others into that space.

 My other hope is to inspire other mothers who are raising children who have disability to continue to dream, to create, and to share your gifts with the world.  

 Pre-Order your copy of Picture Day Pandemonium here.

The Power of Advocacy

The Power of Advocacy

If COVID-19 has taught us anything it is that if you are raising a child who has a disability- you need to learn how to advocate.

During this pandemic we saw some companies, schools and departments of government really step-up to help our community, but we also saw many other fall short of helping our children.

What ultimately makes the difference for our community is our ability to advocate.

 Last year I was honored to be a participant in the Pilot Parents of Southern Arizona’s 2019-2020 Arizona Partners in Leaders class. This class is free to parents who are raising a child with a disability or for people who have a disability. It teaches parents how to advocate, how to understand the legal rights for people with disabilities and how to change laws if those rights have been infringed on.

This class has fundamentally changed my life. It has given me the tools to be a better advocate, not only for my children, but for the community as a whole. In September I was able to join with other collaborators who I meet through the program to push AHCCCS to help parents get care for their children during school hours. From what I learned in the program I called for action from the community, gathered stories, wrote letters, contacted the press, and was able to sit in meetings with decision makers to press for our rights and to make sure that our concerns were being heard. These actions resulted in parents getting in home help for children during remote learning hours and helped to speed up the release date of that program.

Another member of the 2019-2020 group was my dear friend Sarah Dorman. During a get together we talked about how Universities should be allowing students to get college credits for working with a SPED student in-home during the pandemic. Though I struck out with ASU and U of A, Sarah hit a home run with NAU! NAU took this idea and ran with it. They are in the middle of a pilot program with 5 students! It is the hope of Sarah and the University that this will not only benefit the children, but also the students by giving them hands on experience with working with a child with a disability.

https://www.azcentral.com/story/news/local/arizona-education/2020/09/24/northern-arizona-university-department-economic-services-programs-help-students-disabilities/3497695001/

https://www.azfamily.com/news/arizona_schools/nau-program-helping-kids-with-special-needs-navigate-online-learning/article_3b9618e6-013c-11eb-9dfe-934beadc71ea.html

 Learning how to advocate is one of the most important things you can do as a special needs parent. The program that Sarah and I participated was a Pilot Parent Program. These programs are free to parents across the United States. The link for the program Sarah and I participated in is below. If you don’t live in Arizona please search for one in your area and sign up.

If you are interested in learning more about Pilot Parents of Souther Arizona here is there website:

http://pilotparents.org/

 

 

 

More Needs to be Done for Special Needs Families

More Needs to be Done for Special Needs Families

A Call to Action

Last week I reached out to families and asked them to share their stories about how online in-home schooling is going and to find out what more needs to be done. Parents are worried about their children falling behind because schools are not making accomodations for their children. Many mothers have had to quit work to stay home and attempt to do online learning, and many days end with tantrums and very little education being accomplished.

As long as children are at home, parents need at home support during the school day.

Parents need to be able to hire respite workers to help their children get an education online.

This week our communities story and plea for help was on the radio (below), in the AZ Republic (click here), and in local papers around the Valley (above).

The Opinion above was sent out to the Governors Office,  to Arizona’s Superintendent Kathleen Hoffman, and sent to leadership at DDD.

 

If you want to get your voice heard please email our leaders and ask them to lead and to help our community through this difficult time. 

Contact List:

Governors Office: Click here

Superintendent Hoffman: 

adeinbox@azed.gov,
engage@az.gov,

Department of Developmental Disabilities:

jakenna.lebsock@azahcccs.gov,
jami.snyder@azahcccs.gov 

DDDCustomerservicecenter@azdes.gov

Create a One Page Intro for your Child

Create a One Page Intro for your Child

How to create a one page information guide for you child.

Therapists and teachers go in and out of our children’s lives… almost like a revolving door. I can remember at one time we were juggling 3 doctors, 5 ABA therapist, 1 speech therapist, and 1 physical therapist. I remember getting tired of repeating the same things over and over again every time someone new came into our lives. What does he like? What motivates him? What are the best strategies to have a successful session.

 

So in order to help with these transitions I finally made a one page introduction that I use to introduce my child to new people in his life.

 

Jo Donofrio presented this idea to the Pilot Parenting class I was in and we were all blown away by it.

 

This one page introduction is broken up into 4 different sections

 

  1. Strengths- In this section you write down your child’s strengths and what others say positively about your child. Is your child smart, observant, highly energetic, caring, affectionate? Start out by bragging about your child and talk about how amazing they are.
  2. Photo of your child.
  3. What is important to them- Is it important for them to be successful in what they are doing? Is it important for them to be around others? It is important to play with puzzles? Is it important to read their favorite books?
  4. How can the worker properly support your child? What does the new therapist or teacher need to know about your child to help them be successful in working with him/her? Does your child need a lot of prompting before you change tasks? Does you child need hand over hand help to write his name? Does your child work best when he is working for rewards? Does your child us the token system to earn rewards. Think of this section as building a roadmap for successful relationship building between your child and this new therapist. 

 

 

Download your free template here

Building a Functional Relationship with Your Child’s Therapist

Building a Functional Relationship with Your Child’s Therapist

Therapists are part of the package when you have a child with a disability, and there are so many of them: physical therapist, occupational therapist, speech therapists, and on, and on. 

 

My children have had as many as 4 therapists at a time and when I had a crazy busy schedule full of therapies, school, and work the relationships I built with those therapists were invaluable. This is not to say that I never disagreed with any of them. I have fired a fair share of therapists

 

These therapists usually see our children for a very short amount of time, and so it is critical that we develop trusting relationships with those therapists. We know our children best and they have the knowledge of how to help them achieve certain goals. It’s important that we as parents communicate openly, honestly, and in a collaborative manner to foster a trusting relationship. It is also critical that the therapist be willing to listen to the parents, ask parents what goes they want to see accomplished, and take the time to teach the methods they are using in therapy so that the parents can work on things at home.

 

Here are 4 tips for fostering a productive relationship between parents and their therapists.

 

  1. Open communication- parents relay the goals you want for your child and how your child learns the best, therapists should listen to the parent’s goals and teach parents how to be successful at home.
  2. Review goals regularly and make adjustments when necessary. This is so critical to the success of any program. Einstein once said that “The definition of insanity is doing the same thing over and over again and expecting a different result.” Be open to new methods of doing things and make sure that your child is progressing on their goals.
  3. Parents you can watch sessions so you can learn the interventions and watch the therapist work with your child.
  4. Ask questions. Don’t be afraid to admit that you don’t know what you don’t know. We are not therapists and we don’t know how to do what therapists spend years learning. Ask questions and be open to their responses.

 

We did a whole webinar on DAMES focusing on this topic.

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