Most of my friends have been listening to me go on and on about how this summer is the Summer of Life Skills for my daughter, Ryan. She is 11 and really hasn't had many opportunities to do the things that kids her age have already mastered, like memorizing phone numbers, paying for purchases in a store, or deciding what to eat or drink at a restaurant. Ryan sustained vaccine injuries as a baby that resulted in an autism diagnosis and intractable epilepsy, which in turn is compounded with a diagnosis of PANS. She has lost her autism diagnosis and remains in managed recovery, however, some days she has significant processing delays. Ryan was unable to attend school from 6.5-10 years old because she was having dozens (ok, HUNDREDS) of seizures each day. If you combine the uncertainty of losing time and memories when you have hundreds of seizures per day with the lack of experience that many kids get from interacting daily with peers and teachers, and you end up with a very anxious kid. She feels very insecure when asked to do things herself because she has either been in too much pain to do them before, or, never learned how to do them in the first place. The seizures affect her memory and create confusion, which in turn affects her self-esteem and her ability to communicate her needs and wants effectively. It's a mess, but her body is healing. It's a slow process, as the injuries that she sustained may never completely go away, but she has improved so much that I know that she will continue to blossom with the right support. This is why we are focusing on increasing her experiences. The repetition is good for converting short term memories to long term life skills.
I decided to hold myself accountable and start with life skills training last Saturday. I made sure that I took the day off from working with clients and wrote a list of tasks that I wanted to work on with Ryan. I talked to her about where we were going and showed her the list so she could see if for herself and know what was expected. (Knowing what is expected is a HUGE way to reduce anxiety.)
Here is the list:
Go to Home Goods or Target and pick out new sheets and comforter for your room
Visit a restaurant (your choice), decide on something from the menu, order it, pay for it, and eat it. (Mom will help with change and counting, if you need help)
Go to Barnes and Noble and pick out a book to read for pleasure and a cookbook to make meals with Mom for the family.
Life Skill #1 Choose Something New to Replace Something Old
I was expecting a lot of push back because my Ryan is a creature of habit, however, she was excited to go to a restaurant and eager to begin. We hopped in the car and drove to Home Goods. We parked and got out of the car, and I reminded her that she has to be aware in the parking lot and look all around her for cars and other people. She paused before crossing and looked both ways (she's about 80% on this, I have definitely had to grab her by her shirt to slow her down since she's way too cool to hold my hand these days). We walked into the store and we both just stopped.
I should have taken a picture of what the store looked like because it was alive with bright pops of color and textures, and it was crowded. I felt excited and claustrophobic at the same time, so I knew it would be tough for my girl. I could see that Ryan was getting overwhelmed so I suggested that we head straight back to the bedding section. I specifically did not ask her what type of colors or patterns she wanted because you never know what you'll get at a store like Home Goods. What I did ask her is what was important to her and she told me that she wanted a soft bed like she has now. We looked at the different bedding sets and Ryan told me that things were "too ugly" which I really know means, "I don't know what I want." I pulled down different sets from the shelves to make it easier for her to focus. She picked a purple set that coincidentally, (sure, let's call it a coincidence, LOL) is similar in color to the bedding that she has had on her bed since she was 3 years old. She also picked the fuzziest white blanket in the store to complete her new "soft bed."
We headed up to the checkout and I paid for her new bedding. I explained to her how to pay using a debit card and showed her where the chip was in the card so she could learn how to put it into the macine the correct way. We headed back to the car and discussed where we should go next. I reminded Ryan that we could go to a restaurant and she asked if the Starbucks in the book store was a restaurant. I explained that it was and asked her if that was where she wanted to go. She said yes, and away we went.
Life Skill #2 Choose Something to Eat from a Menu, Pay for It, and EAT It!
We walked into Barnes and Noble and Ryan made a beeline for the Starbucks Cafe. There were 3 people in line ahead of us, which allowed us to discuss what she wanted to order. Ryan has been on a gluten-free, dairy-free, soy-free diet for 8 years. We have slowly been introducing in gluten and dairy to see how she feels when she eats foods that contain them. She knows that she needs to take enzymes and to only eat one food at a time that is "regular" and not GFCFSF. I was relatively certain that she was going to order a gluten-free Rice Cereal Treat, but she surprised me. She asked if she could have a confetti cupcake. Her big, brown eyes held all the hope in the world that maybe, this one time, that I might say, "yes."
As you can see from the picture, I said yes. Heaven help me, I let her have a cupcake full of gluten, dairy, sprinkles (!!!), and more garbage than she has probably ever eaten combined in her life. She was pretty excited. She ordered her cupcake and her Grande cup of ice with a spoon like a pro and waited patiently while I ordered my iced coffee. She counted out the correct amount of money while an impatient man huffed and puffed behind us and paid for our order. We sat at a table and she waited for the barista to call, "Ryan, confetti cupcake and Grande cup of ice!" She walked up to the counter, realized she couldn't carry both herself and made two trips, carrying the cupcake back first, then the ice. She chewed up two enzymes and enjoyed the first bite of her cupcake. She ate 1/2 and I suggested that we take the rest home so she could enjoy it later. She wasn't exactly thrilled with the idea, but agreed. She headed to the kids section and perused the Captain Underpants section.
Ryan picked out a new George and Harold story to add to her collection and asked if we were done. I told her that we had one more thing to do, and then we could pay and leave. I had never been to this Barnes and Noble so I found an employee and asked him if he could show us to the cookbook section. He quickly pointed us in the correct direction and we discussed what kind of cookbook we should purchase.
Life Skill #3 Do Something You Really, Really Don't Want To Do
As expected, shopping for a cookbook was not fun or easy for Ryan. She really struggles with food aversion, and has particular issues with meat. I completely understand this aversion because I was a vegetarian for 15 years and vegan for 10 years. I knew that finding a cookbook that she would be interested in that wasn't all cakes and cookies was going to be hard. She started to lose focus and complain that these books were all "for other kids" and that she wanted to go home. She had hit the point where she was ready to give up. This is probably the hardest thing for me as her mom to deal with, by far. I am not a quitter. Giving up is just not part of my make-up, so when she quits without trying, it really pushes my buttons. I let her complain and reminded her that this was the last thing on our list, and that we needed to finish what we started. This idea was not well received. Ryan was hitting her maximum frustration level, and I was fixed on what I thought needed to be completed. We hit an impasse and we both needed a break, or things were going to get ugly.
We walked back to the Kids section and sat down, not talking to each other, just sitting close. I knew there was nothing that I could do to help her other than just wait. I found some gum in my purse and asked her if she wanted a piece and she asked for 5. I compromised and gave her 3 pieces and she shoved them in her mouth and chomped away. (Gum, like chewy tubes, is huge stress reliever for kids with anxiety, I encourage every parent to have gum, chewy tubes, or even carrot sticks available if your child can chew safely) We spent about 20 minutes relaxing when I told Ryan it was time to pick out a cookbook and go home. She started to get frustrated again, and I offered to help her pick out a cookbook without meat in it. I explained that there are vegetarian cookbooks and that we should look for them. She was still unsure but got up and headed to the cookbook section, and I followed behind. Ryan found the vegetarian section and asked me which one she should pick. Together, we chose three cookbooks that had interesting covers and decided to go with the one pictured below.
The cookbook features recipes that have gluten-free, dairy-free options and simple prep. It also explores international flavors, which is something we can work up to as her tastes begin to mature. I do not expect for Ryan to dive into a spicy lentil curry tomorrow, but I do think that exploring new tastes and textures is something that she will become more agreeable to when she sees how food is prepared and takes part in the preparation.
The total of our purchase was around $42. Ryan had a $15 gift card that she used and then gave the cashier $30 in cash and waited for her change. She asked if she could keep it and add it to her piggybank and I agreed. We left the store and she reached for my hand as we walked through the parking lot. We got in the car and my eyes teared up while I watched my baby buckle her seatbelt. I remember what a huge accomplishment it was for her to find the two ends and click them together for the first time. My sweet girl is growing up, and she is building her supply of life skills, but she still needs people to be kind and patient while she figures it all out. She is learning to ask for help, which I believe is the greatest life skill that I can teach her, and I thank the Universe, everyday, that she healthy enough to accept the help that she needs.
I know that a lot of parents reading this are at very different points in their journey. I pray that our experiences give you hope, and know that at one point, we were told that my daughter would never be able to attend a General Education classroom or be able to perform even the simplest of self help skills. Trust your intuition as a parent. If you feel like something isn't working for your child, start asking why and don't stop until someone provides you with answers that make sense FOR YOUR CHILD. There is no place in recovery for out dated statistics and antiquated ideas. Each one of our children has a unique potential that needs to be nurtured and respected.
I look forward to sharing our Summer of Life Skills journey with you.
To be continued...