My Lola

Lola is my grandmother. She means a lot to me. I am most loved and cared for because she helps our family so much. When I lived in Miami as a little boy I was first diagnosed with autism. My Lola retired from her job in Buffalo to help us. She lived with us so mom could balance the needs of my three siblings and me as my dad was very busy training to be an ENT doctor. 

Lola supports me in my interests. She has come to my autism conferences and loves to share my blog. She makes books interesting by reading to me with lots of expression. She talks to me about news and anything. I like how she talks to me knowing I have so much interest even though I might not seem interested by my lack of joining in. When mom helps me with the letterboard, she is patient in asking me questions and waiting for me to answer. 

Lola makes my life wonderful in many ways. She includes me in everything. She takes our whole family on a yearly trip. We have gone to Mexico, Dominican Republic, Outer Banks, Jamaica, and the Philippines. I love seeing new places and sharing good times together. 

Lola loves to sing. She has a pretty voice. I love listening to her because my mind is soothed by her beautiful voice. 

 

Lola makes time for her family. She always has us over for Sunday lunch. She makes lunch for my family and my cousins’s family. Sometimes more people come too. They might be aunts, uncles, neighbors, or friends. Lola is Lola to all who come to her house. People get together because of her hospitality. She cooks so well and feeds everyone. She knows my favorite foods and makes sure to have them for when I come over. 

 

My Lola loves me. She shows her love in many ways. Her kindness helps me have peace in my heart and be happy. I love her so much. 

Happy Birthday Lola! 

 

Adolescence

G writes:

Dear Philip, I have a 14 year old grandson with autism who has gotten more aggressive. He gets upset easily and throws things. He wasn’t like this before. He can’t tell us why he is upset. Do you have any insight on what might be going on with him?

Dear G,

I don’t know what your grandson is feeling but here is how I felt at age 14. For me puberty came with many strong feelings.  When I was 14 I wanted to be like the neurotypical kids at my school. They could do things with their friends and be more independent. I felt like there was no hope for me to be free of being dependent on others. Having to have an adult follow me at all times made me feel so different and helpless. I wanted to be normal but there was nothing I could do about it. 

In my mind I want to do what I should, but impulses beyond my control sabotage me. I am unable to make my body follow what my mind wants it to do without lots of support of others. I am always going to be dependent on others for everything. I want to be more independent but I cannot do what needs to be done to be independent.  

I felt very trapped in childhood while my peers moved forward into adolescence. My body was changing and did not match my behaviors. I acted like a toddler in many ways. I needed the support of a child still. It made me feel sad all the time.  

Creating myself to be someone else was my daydream. I dreamed I could talk, go out with friends on my own, and have a girlfriend. But my reality was the opposite.  I had to have mom help me with everything just as my peers were separating from their parents. I questioned,  “God, why cant you heal me?”  I was angry at myself for being sad and weak to get better. My emotions boiled over easily. Aggression and impulsive acts like throwing had their roots in frustration of not being able to control myself.  

Learning to accept my disability is a lifelong challenge for me. Happy to say I am making progress. I have better acceptance of myself at age 19 than I had at 16. Making friends with others like me has helped. I belong to some clubs with other RPMers who meet weekly on Zoom to discuss music and books. I love knowing I am not alone in my need for support to express myself. I also feel less anxious in my new school because teachers understand that when I have difficulties I need time and space to recover and not lots of lectures and impatience. 

I know it is not easy to watch your grandson have such difficulties. But love and positive feelings toward him will help him feel more accepted so he can accept himself too. Maturity will come. We must all be patient. I also am waiting for when I will be better in my abilities to deal with life’s challenges. 

Spring Resurrection

Spring is God’s resurrection of nature. 

New flowers make their way toward the sun.

Grass grows after removing its winter blanket of snow and ice. 

Music fills the air as birds sing in rounds and harmony. 

Trees make new hats and clothes for their bare bodies.

Floral designs and bright pastels for fashionable fruit trees. 

Glorious sun brings the resurrection of all things new. 

Love- A Poem

Love is joining hearts.

Most of my life is spent apart.

It’s hard for me to be a friend.

Have autism that never ends.

It keeps me chained inside my mind.

Without a way out for others to find. 

Fragmented pieces of myself I try to show.

Please put them together so you may know

I love. 

I love to be loved.  

 

Goals for 2021

2020 was a rough year. I hope 2021 will be much better. 

2020 had many challenges. I felt very stressed and anxious. I went on medication that has helped. I still need to learn how to cope so I can learn to be more resilient to changes. 

Making my body more compliant to do what I am supposed to do is my number one goal this year. 

Freaking out body has been my biggest problem this year. For the first half of the year I was aggressive towards others when I got stressed. I would grab and scratch people. I did not want to do it but this is how my body acted automatically when stressed. 

In September I started propranolol and Lexapro for anxiety. Propranolol kept me from having fight or flight responses. This helped me tremendously. I stopped being aggressive. It made me more relaxed because i was no longer attacking others and hurting them.

My latest problem is getting paralysis. I lose functional movement at times. I cannot make my body obey. I hate when it happens. 

People think I am being willfully resistant, like I am having a battle of wills with them. I am not trying to disobey people. My body gets stuck. It gets unstuck on its own. But the more demands there are the more it keeps being stuck. 

I understand how frustrating this is for everyone around me. I think it causes lots of power struggles. I know I have to do something and I plan to do it once I can.

 

In 2021 my goal is to have my body be better behaved. I want it to be calm and well mannered. I want it to listen and obey what it should. I want it to stop freaking out. I want it to stop freezing.

I think I will try to get back to exercising. I want to work on handwriting. I should pray and read Bible everyday. I want to get back to writing more. I hope I can meet my goals this year. 

Happy New Year!

 

Covid 19 Poem

Walls you build

Between maskers and unmaskers

Trumpers and Bideners.

Between students and teachers

Grandparents and grandchildren.

You infect us with your poison  

It destroys cells and society

You show no mercy.

The weak are vanquished. 

The rest are bereaved 

Their lives are coming apart. 

 

A virus not seen

How are you so powerful? 

Pandemic Schedule

The coronavirus pandemic really tested my nerves. Lately, I am getting better with not letting my anxieties get the best of me. The lockdown from March to June was scary for me. I was not able to feel calm. I was too worried that someone I loved would get sick. I got worried I might get sick. I wanted to try to have a more positive outlook but seeing the news everyday got to be very distressing. Many people were getting sick and dying. I stayed at home every day. I got really messed up. My aggression got more difficult to control. I was grabbing anyone who came too near me just because I felt mad and anxious. 

 

Problems with my aggression and anxiety were getting so bad. I felt depressed because I was a hardship on my family and I could not stop myself from getting more treacherous to deal with. The worst was panicking in the car and grabbing the driver of the car. I was my lowest in June. I could barely do anything. 

 

Mom researched how to help me. Mom has been helping me by doing things to help me feel less anxious. Mom reads me a chapter in the Bible every morning. I love hearing it and talking about it. Then I practice handwriting to answer questions about what we read. Then we pray. Hearing the Bible helps me hear God’s voice so I can be more connected to His peace.

 

I have learned to quiet myself with meditation. Sometimes we listen to a meditation app to guide us. It is relaxing. 

 

Then I do my neurodevelopmental movement program and my Special-Fit exercises. It helps me feel more control over my body so my crazy impulses don’t surface as much. I lift weights because it is supposed to help me be more tolerant to stress. I feel good having exercise as a daily routine. 

 

I eat lunch next. I have been doing the ketogenic diet to help me with my anxiety. I eat salad or eggs for lunch. It is bearable. I don’t get my goldfish or grapes but I can still eat berries and cauliflower pizza.  I take a probiotic. Looks like my health is getting better. I am slowly getting better. I feel calmer and happier. I get more restful sleep and energy with being on this diet. 

 

In the afternoon I ride my bike. I watch TV. I visit my grandparents. I might write a little. Every Monday I see my friend Brielle on Zoom. We have a Bible study. Her Uncle Terry teaches us. I love getting to participate. Brielle and me get to share our thoughts. Fear that I had about covid-19 gets less as I get more close to God by hearing His word. 

 

At night I have a healthy dinner with my family at the table. I make myself eat everything that is served. I have tried new foods like salmon, cashews, broccoli, and snap peas. I never would have tried these before. 

 

After dinner I help with cleaning up the dishes. Sometimes I throw out the trash. Then I go on another bike ride, listen to piano, or watch TV with my family. 

 

That is my daily pandemic schedule. Making a schedule with healthy habits is helping me to get through the pandemic.