When I first started writing my books about Elizabeth, I did it to tell our story.
To help people by hearing what we did and maybe, just maybe, something I said or we did would be just the thing someone needed to hear. Maybe even just hearing that they were not alone in the journey would be helpful to someone.
And because of the books, I started venturing out to some colleges to talk to future teachers or therapists and sometimes future school psychologists. I would share our story, again, in the hopes of helping these soon to be professionals better understand the “mom” perspective. To maybe be the voice in their head when they are looking at the faces of families in their careers.
I spoke at libraries and to small groups of parents and started some nice social media presence.
And I loved doing all the above. And one of the things I loved the most was getting asked questions that allowed me to share a bit more into our lives than my lecture notes did.
It gave me a chance to tell more about Elizabeth and our lives together.
It allowed me to peel away the cover a bit and let people see how our lives worked with this amazing child in it.
We all have big moments in our lives. Ones that stand out and create change or big emotions. One you don’t forget.
Ones that shape your next move.
I thought I would share with you 5 of my most memorable moments in my journey with Elizabeth and what I learned from them.
1.Talking Stick-
Elizabeth was only 3 or so at the time and was still non-verbal and we had enrolled her in a preschool program. One that had both neurotypical and special needs children in it. And it was incredibly emotional to get her into the program due to testing and then hearing the results of the testing. But we did it. I went to school with her for the first few days, I spoke with the teachers and told them all about how she worked, what to watch for and on and on. Little bit by little bit, I shortened my time there until she was able to go on her own. And then one day, in November, my husband and I go in to pick her up and she is standing in front of the class, crying and holding The Talking Stick.
My understanding was that the holder of the stick was to tell something about their day to the class. But Elizabeth was nonverbal, with sensory issues. So, she wasn’t not talking, she could NOT talk.
She was just crying in the front of the room.
We took her home that day and did some hard thinking and planning of the next right move for Elizabeth.
What did I learn? I learned that no matter how much or how well you advocate for your child, you simply cannot be done. That no matter how much you tell about your child, others have not seen their ways or know their signs of problems.
I learned and take with me to this day that I will always need to visit places often, talk to the teachers/professionals/employers often to make sure that she is understood and given a fair chance in any and all situations. To make your presence known…often.
2. Dairy Queen Meltdown
Ah, the joys of summertime! And how about a nice July 4th parade? In our town it is THE thing to do to go to the green for the parade. Not only is there a parade, but there are also carnival games and food vendors for after the parade is done.
Oh, it is BIG.
So I thought that it would be fun to take Emily, my oldest and Elizabeth to the parade. My husband could not come due to work but I was certain I would be fine.
For reference, Elizabeth was 4 at the time.
We headed to the parade, parked and walked our way to a nice place right near the bandstand. PERFECT, I thought, as we could see it all, they could grab some candy and have fun. LOUD and CROWDED
The parade was long. It was hot. We played the games Emily wanted. CROWDED-HOT. And then the meltdown began. And it was my bright idea to walk to Dairy Queen for a treat. I mean wouldn’t that help the situation?
The line in there was long. So long. TIRED-HOT-HUNGRY
And then the real, unstoppable, watched by so many meltdowns began.
We simply had to leave.
What did I learn? I learned that I needed to better learn about my child. And by doing that I could make a decision that would allow her and all of us to have fun. I needed to recognize what she could and could not handle. It is hard to make the right choice for your child when you don’t fully understand them yet yourself.
- She wants to talk
Soon after the talking stick episode, I was driving her somewhere and all of the sudden I stopped and turned around to look at her in her car seat. And I asked her “Do you want to go to preschool anymore?” She shook her head no. I then asked her “Do you want to work hard to learn to talk?” She bowed her head to her chest and started crying and simply nodded her head.
What did I learn? I learned that I was right all along… that she was “in there” That the things I told people about her were true! I learned that she was so aware and smart and that being non verbal did NOT mean that she did not understand. I also learned that asking her what she wants and going over plans on her level was so important. To this day, we talk through as many things as we possibly can.
4. Butterflies for Dad
“Don’t worry Mom, the butterflies are waiting for Popi” These were words said to me by Elizabeth the day before my beloved Dad went to heaven. I cried and she hugged me.
Beautiful…stunning and her words and feelings alone.
What did I learn? I learned the depth of spirituality my sweet Elizabeth has. She is so intuitive and full of deep emotions. This she carries to this day and we see her deep, deep feelings.
To this day, when we see a butterfly she will talk about one of our family members in heaven.
5. Sopranos ending
I love to exercise…need to exercise. It is like therapy to me. I think, I pray, I even cry during this time. I listen to music or watch a show.
Never did I learn just how much I need self care other than exercise until my favorite show ended. I would become so involved in this series that I could hardly wait for the next episode.
Then it was done and for some reason it hit hard. Maybe it was because I was too invested in it or maybe, more truthfully, I needed to find other ways to do some self care. But I did not know how or even what to do.
What did I learn?
Self care is not selfish. It is a must. And it can be whatever you need. Quiet time or reading. Maybe just coffee and a bit of journaling. I learned that what we feel as parents and caregivers to these special children is deep, constant and more than most others feel. And we critically need these moments to recharge. I learned to put myself a bit higher on the list and not feel guilty about it.
These are just a few of the moments that have impacted my life and journey with Elizabeth.
I hope you enjoyed knowing just a bit more about us.
See you next month.