Reflections 2024

 

This has been a year of goodbyes and new things. A season of trying to understand that by living, things will eventually end. A lot of missing things and empty places. Some new sprouts of things that Could Be in New Places.

A year ahead that looks exciting in a good way for James. That is what I am trying to focus on.

Over this past year I am finally starting to see and become involved in supports and groups I've been hoping for for decades: Online parent groups and forums that allow us to feel seen and mitigate our isolation and weariness. Inclusion in a school and the parents. New opportunities for my guy as an adult. 

I am thankful for those and hopes this is a wave that just keeps growing. 

Independent Living Skills: The Schedule

 Fall is a good regrouping time for many special needs families - the start of another school year, support services are done with summer and vacation schedules. Goals are one everyone's mind.

With ABA legacy, current school Transitional IEP, and new Behavioral Respite teams on board, it's time to surround James with opportunities and support for honing and growing his independent living skills.

Yesterday, the focus was on washing his own dishes. We have a bottle brush and gloves that help him with that. Today it's removing trash from his room and bathroom. I am still doing the heavy lifting for both activities, but we are building James'' skills. The practice, with reinforcement at school and during respite, will help.

ABA had lovely schedules at first. What ends up working best now? a brief list of Chores and Rewards (incentives). 

I am inspired to get us on a whole house chore chart for daily and weekly chores, especially with 2 more cats and storage boxes in the house. Pinterest and Google are most obliging with ingenious designs.  

Chores were verbally assigned and understood in my home, growing up. Both James and I can benefit from a visual organization. 

Advocate Psychology for Special Needs Parents

 I have been a special needs parent for 17 years now. My "kid" is an now an adult. I've debated about continuing with posting and decided that I will, but veer more to the parental side. I want to respect my guy's privacy, but there are so many new parents starting this hell of a ride, as well as those looking at that post 18 years old transition we are currently navingating. I still have thoughts, things to say, and info to share.

Allons-y! But first, some humour. 

Here is my approach to IEP meeting prep and crafting email messages, requests, and responses (after the initial emotional outburst). Each day, every day. Sometimes continuously, from the time I wake up until the time I fall asleep where I am sitting.

With thanks to all the brilliant folks at Pixar.

The Parental Mirror

Years ago, when talking with my daughter's therapist, as I tried to be there for both my kids while supporting the family with a F/T job as my family and home broke painfully apart and crashed, I was given the best piece of advice.

"Your daughter needs to see you happy," she said. "She needs to see you making time with your friends and modeling positive social and coping strategies."

At the time I felt despair, like falling down a well. I was overwhelmed, unequipped, and isolated. I felt like the worst parent ever.

Then I tried even harder to catch myself first before hyper focusing on "finding a fix" for my kids.

I have gotten better with practice. I have realized this not only applies to my daughter, it also applies to James, who has a highly developed empathy with those around him. On the plus side, he models "good" behaviours if they are around him and he can, to an extent, read a room. On the stinker side, it gives him a fiendish ability to push peoples' buttons.

But I digress. Fewer years ago, I was talking frankly with my son's ABA supervisor, about the overall regressions and socially unacceptable behaviours that roared out in the face of a horrible 8th grade experience, second evacuation due to wildfires, and COVID-19 lock down. I was so desperate for help that despite trying to bubble myself so I could remain on call for my family members with already compromised immune systems and not lose any time at a severely unsympathetic job - I called ABA and told them I wanted to continue in-home services. Thankfully, it was the right call.

"Your son is begging you for attention," he said to me. "You do not realize how stressed you are and how that is affecting him. I know you have a huge load of responsibility, but your son NEEDS you." This set me on the track of thinking again about the Parental Mirror, as I like to think of it, and how important that was for my kids and myself. 

With this supervisor's urging, I was able to investigate IHSS and becoming my son's caregiver. A family friend, who also is an IHSS caregiver for her disabled son, urged me on further. I discovered that an IHSS staff person had misled me in thinking I could not be my son's paid caregiver (at 15 hours a week) if I also worked full-time. To make a long story short, I transitioned from working 40 hours a week at an increasingly stressful job and not being paid for caring for my son to being paid to care for my son (currently at 63 hours a week) and (all things considered) earning more take-home pay. 

I am SO much happier, and it shows in my son's reports from school and his overall demeanor. It has taken me a full year to stop feeling burned out and that I can do more besides caregiving for my son and start living my life again.

Everyone will tell you that, as a Special Needs Parent, you are crucial to your child's development and well-being.  Next time you're feeling stressed and downhearted, take a look at yourself in the Parental Mirror, and give yourself a boost, love, and encouragement - just as you would to your kids. It works, and you're worth it.

Parents ... Sound Familiar?

 After a super good week at school and afternoon ABA, when all was pretty darned much sunshine and budding roses, there came Counterbalance and negative behaviours. Sigh. Autism, Spring, Teen hormones, lack of a social squad, and impending graduation - all smooshed together in an active pressure cooker. 

This was me last week:

My guy is now 18. April is a good month to pause and reflect how far he has come, honour his resiliency through life crises I never had to deal with at his age, and gird up for the uncharted that is adulthood. Stay tuned.

Showing Care and Kindness

A common thread for parents and caregivers to those on the spectrum is a deep wanting to know what their child or person is thinking and feeling. After a while we think we know. We hope we are making correct guesses.

And the there are times when a sweet connection is made, and it is everything. 

I remember, after months of being told my son might be nonverbal, he began to make progress. I cried big mama tears when, at age 4, he said "I love you" to me.

The bear hugs (sometimes flying). The big smiles and starry, happy looks at me from his heart through his eyes.

The most recent illness, with me on the sofa, made better by a concerned text from his room to mine: "Mother, do you need ibuprofen?" or a shy shy "there there" pat on my head.

The Thank You card he insisted on giving me because we were sick on Valentine's Day and by the time a friend could take him to the store they were out of those cards.

Tonight, being offered a cookie that he baked with his class today at school (it was delicious). 

I am touched, and I am proud of him for being caring and showing it.

Still Standing

We've had quite a spell of winter bugs: colds, flu, and more. 

Winter has been very winter this year, with lots of atmospheric rain and periodic plunges into the 20s. We were visited by snow in our hills and we may not yet be done with this frosty and wet weather.

We participated in two ABA sessions at our local bowling alley and while the second session was much more enjoyable for James, it is also where we picked up norovirus. Gah!

Through it all, James has been really patient. He is doing great with making snacks with supervision - quesadillas and PB&Js. He has started to participate more for PE. 

Still here, and moving forward.