Autism: My 20 Years of Learning and Love

This is part two of a larger story. You can find Part One here.

THE ADULT YEARS

As Lesleigh moved into adulthood, we, her dad and I, had to transition with her. Once she turned 18, all of the supports for disabled children ended and she needed to transition to the adult support and related programs offered. The other thing that became necessary was getting her set up for the provincial support program that provided a small guaranteed income for people with severe disabilities. The application process was fairly straightforward for these supports and after a quick review and an interview she was approved for supports at the maximum allowable amount. A bank account was opened for her, with her dad acting as her support for managing the funds properly. We also needed to establish formal guardianship for day-to-day decision making, and trusteeship to cover any and all financial decisions. This process was far more involved that applying for the income support but with the documentation from her psychologist verifying that she had a cognitive disability and my connections with the right people in government, we filed the papers successfully. The entire process took approximately six months to conclude but when the dust had settled James and I were joint guardians and trustees for Lesleigh. As she was also now legally an adult, the persons with developmental disabilities programs connected us with an agency whose focus was offering meaningful activities and programing for cognitively disabled adults.

Lesleigh was always an active participant in her day program activities. She very much enjoyed the travels into the community which gave her more and more confidence with taking public transit. The agency had found a number of volunteer opportunities for her and other participants in its program and the staff would accompany and support the participants at their volunteer placements. One of the many places Lesleigh had an opportunity to do volunteer work was the Humane Society which fostered her innate respect, care and love of the entire animal world. One day per week was dedicated to attending an art program for disabled people – this she enjoyed although she preferred to do her own thing, did not like to take any suggestions and was reluctant to try other media, with the exception of acrylic paint. Perhaps her most favourite activity though was shopping. Whether it was shopping in the drug store, or going to a department store or even just going for coffee she was in her element.

Since the age of 16 when she was in high school, she had always had access to a debit card. We would provide her with a pre-determined amount of funds at the beginning of each week and this was to serve as her budget. She knew the mechanics of a budget and had been coached often by the agency staff on how to make one and how to set up and use a simple ledger for her daily transactions. Unfortunately, Lesleigh was compelled to spend and buy things; as long as she was under the supervision of her support staff she was fine...usually. There were many days that she would come home with yet another bath products in a fancy set of bottles, or a pretty bottle of cologne that cost upwards of $30 or more. There were simply days that even the staff were powerless to convince her that these were not appropriate purchases, especially since she rarely, if ever, used any of the products she purchased and the pretty bottles would become dust collectors or be added to the bin for a future garage sale.

One might think that since Lesleigh was now an adult, things would level out and we could all settle into life with a young adult. Well, maybe I was the only one who actually thought that. My previous experience was with my son who was now 20 years old, holding a job, and moving out on his own. This was a different situation. Some of the challenges we experienced when she was younger lessened, while new ones appeared. As with most young adults, the jump from child to adult is a confusing time and this was no different for Lesleigh, except, perhaps, that while her age told her that she was an adult, she really was not cognitively able to understand some fundamental of life as an adult. She would often comment that we kept treating her like a child. It was true to some degree that we were still treating her like a child. Admittedly we were, but her understanding of most concepts were years below her chronological age; knowing you are an adult and behaving in an adult manner were often two separate things.

Here is a great example to illustrate my point. If you remember, I spoke earlier about how computer savvy she would eventually become. One summer during her annual trip to visit with her biological mother she discovered how to go online to her bank’s website and set up another bank account and she learned, or rather taught herself how to transfer money from one account to the other and back again. As you can imagine, bank computers do not “see” who is at the other end of the transactions and neither can they distinguish a $50 transaction from a $5,000 transaction – it can only detect that there is a flurry of activity between two bank accounts under the same name and this set off alarm bells for the bank who immediately suspended the use of her bank debit card. The bigger issue was because both these accounts were set up independent of us, the bank had no knowledge of her having a disability and therefore totally refused to talk with us unless she was with us and we could provide them with proof of trusteeship. Being that it was weeks before she would be back with us, her summer plans no longer offered her independent use of her debit card and she was required to ask for and use cash every time she wanted to buy something. Needless to say, this did not sit well with her!

When she returned home, the bank issue was still challenging even with her present and a copy of the trusteeship order, so we eventually closed her accounts at that bank. The three of us, Lesleigh, her dad, and I discussed the situation and agreed that Lesleigh would no longer have a debit card but instead she would get a weekly allowance to spend as she wished while attending her day program. This worked well for a short time, or at least we thought it did and then the calls started coming to the house from another bank asking for Lesleigh. It did not matter how many times we told them that we were her trustees and had control over her finances. They kept calling even after assuring us that they would put a notation on the file that they were unable to speak with her. Since they had no proof of trusteeship, they also refused to tell us details of why they were calling.

During one of these calls, a lady from the bank proved to be somewhat empathic to our plight and she explained that the reason we kept getting calls was that there were a “number” of accounts opened up under Lesleigh’s name. With each account they had to call and verify information. She could not give us all the details but she did help us make an appointment with a local branch so that we could meet with someone there to “discuss the situation further” and so that we could provide proof of trusteeship at the same time. We were not prepared for what we were going to find out.

It turns out Miss Computer Savvy learned how “easily” bank accounts could be opened at a particular bank from commercials on TV. The commercials promised a debit card with the account; very appealing to a young lady who no longer had a debit card due to past actions on her part. When the card never arrived (thanks to our intercepting the calls to verify her information) she would go online and open another, and then another. In total she opened 27 bank accounts! Worse yet, she had also learned, again from TV how easily one could deposit cheques with the new photo technology. She located the cheque book on the account she holds with her dad (it’s the account her government support cheque is deposited to), wrote herself a cheque in the amount or $500, signed and then endorsed that cheque, and then deposited it into one of the newly established bank accounts. With our proof of trusteeship and with the observation of her cognitive disability all the accounts were immediately closed without penalty (under normal circumstances each closure would have cost $25) and the money deposited was returned to the proper account. Since this incident we have blocked access to all financial websites on her computer and her phone, although occasionally we still intercept letters from credit card companies either accepting her for a secured card or a rejection of her credit application due to unemployment. She has proven to be smart, but dangerously so and therefore, still does not have access to a debit card; a sore spot for her, peace of mind for us.

I don’t want to say that over the years we actually disciplined Lesleigh in some of her challenging times; it was more like taking corrective action and trying to reason with her. Her constant assertions that she is an adult and can do what she wants often puts not only her into a bit of a situation, it also posed a risk to the people she is with at the time. Trying to explain the reasons why certain actions are being taken is often met with blank looks while other times she nods her head and responds as if understanding, only to repeat the said behaviour again. She “forgets” things often and even though she expresses that she is an adult, there are many things that she will not do or even attempt because she is either “too young” or it’s “too hard.” All rationalizations from her mind that undoubtedly whirls at a pace that is difficult to understand.

WHAT I HAVE LEARNED

I have learned that the young lady I am happy to call my daughter is smarter than anyone realizes. I have learned that my learning about autism will never stop and that every day I will discover something new about how Lesleigh processes information or how she reacts to a situation. Most of all, I have learned that no two people on the autism spectrum are alike. Just like people that do not have autism each has his or her own strengths, and weaknesses; each possesses different capabilities, interests, and understanding of the world around them. There is such a beauty in their uniqueness and each person has so much to offer to their family, and to society.

Lesleigh is bright and interesting to speak with. She has an interesting understanding of the world around her and she is very articulate. She has an innate understanding of who she is; a girly girl to the core. She loves jewelry and never goes anywhere without completing her look adorned with something sparkly on her ears, fingers and wrists and at least one necklace. She needs some supports to help her thrive in the world but we are here to do that and where we can’t we have a community support program in our province that is government funded that is not only willing, but extremely able to do so.

The agency that we have partnered with is staffed with skilled and knowledgeable people whose career path has made them experts in supporting people with many different disabilities, including intellectual ones. I would like to give kudos to Alberta Adaptabilities who foster an environment of inclusion and support to their clients. Even through this pandemic this agency has set a very high standard of support to their clients. Since April of 2020 they have offered an online program for their adult clientele which is hosted on a popular meeting platform. The program is well structured, well researched and has offered Lesleigh and many other adults a well-rounded program to keep them engaged while they are unable to meet with their peers as they did pre-pandemic. For this our family is very thankful and most appreciative for it has made Lesleigh’s quality of life so very much better.

CONCLUSION

I cannot see my life any differently than it has turned out. When I became part of that little girl’s family, I gained a daughter and I also gained a whole lot more. The journey has been long and in many cases trying and tough, but there is not one thing that I would change! She walks to the beat of her own drum, she tackles life in her own way. Temple Grandin once said,

“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need. They’ll make their own boxes.”

I want to see how many more boxes Lesleigh will make. The possibilities are endless.

*****

I hope you enjoyed a snippet of my life learning about my daughter Lesleigh. If you have not yet read it, you can catch the story from its beginning at the link below.