Kolya Marches Forward

Kolya

On October 23,1992, Nikolai, better known as Kolya, entered my life when he arrived to our home from an orphanage in Siberia. We were told he was deaf, but in reality he is the opposite with extremely sensitive hearing. This little guy couldn’t sit independently, had never been offered solid foods, had poor head control and made no eye contact. He responded very little to human voices but reacted to mechanical sounds. He was petrified of water and the list is endless.

As I sit here at my computer, my emotions are running rampant as I recall so many frightening moments over the years. Story after story of dangerous adventures Kolya would initiate and follow through with. To mention a few:

• being found on top of someone’s house roof up in the hills
• escaping from a hotel room while we were traveling and was found playing in a muddy ditch along the interstate
• jumping a fence when his one-on-one aide turned her back when kindergarten age and entered someone’s kitchen through an open door
• crawling under the house via a crawl space that was barely visible
• climbing the neighbor’s redwood tree, and so many more.

Remember this is a child doing all of these adventures sans arms. It’s a miracle this fellow is still among us today!

As mentioned, my emotions are rampant this week and I have experienced great sadness because Kolya is marching forward and has left an empty space in our home, especially my heart. Sunday, he moved into the care home where Rusty and Sean have/had lived for many years, filling the place that was left vacant in October when Sean passed away. Although Rusty and Kolya are legally brothers, they really don’t know each other very well since Rusty had already moved there before Kolya arrived from Russia.

I know people are wondering why I have made the decision to place Kolya out of the family home when I am still highly capable of meeting his needs and doing his care. There never seems to be a right time for things like this, but it was time to make a move while I am still able to be involved with the transition. As with most families, adult children leave home and establish a career. It should be no different for my sons. However, the separation might be more difficult between a child with special challenges and the parent when a move takes place. With children like Kolya, parents spend numerous hours daily with their child to meet the child’s physical needs, do food preparation, provide maximum supervision, create in home social life if the child has difficulty creating friends outside the home. Many of our children have not spent nights away from home, like sleep overs with friends. One of my biggest fears has been communication between the care home staff and my nonverbal sons. This has totally stressed me out, not just with Kolya but with my other nonspeaking sons. To find openings in care homes has been an ongoing challenge for my sons who cannot live independently. Therefore, I decided to put my fears aside and take the opportunity when possible.

We started to prepare Kolya for this move when we visited in December and spent time with Rusty.

Marian, Rusty and Kolya

 The staff showed Kolya around the house and where his bed would be if he moved there. He seemed to like it.

Later our friend Beth took him one evening to have dinner where she could show the staff how Kolya was accustomed to eating independently. I also sent the staff short videos of him eating, clearing his place at the table, getting himself a drink, selecting a PlayStation game or DVD and using his feet to open the cases and load and unload the disks himself. It is important to me that he continue to be as independent as possible as an adult. He has worked hard and has been creative in developing these skills. He deserves the right to be as independent as he can be.

I also asked for pictures of staff who would be helping him and the other residents so he could begin to learn their names. The administrator of the home went to visit his day program, which is the consistent in this whole transition. Everyone felt he was ready and all the paperwork was completed and submitted for the move.

Here’s Kolya the last night in bed before the move and the day of the move.

Kolya watching church

Goodbye for now

On our way

Kolya arrives at his new home

Beth and Kolya

Kolya outside his new home

Kolya and his new caregiver

Setting up the digital picture frame

Kolya enjoying his iPad

Although I have cried myself to sleep and shed a few tears during the day, this move has also brought me moments of great pride knowing he will be able to adjust as time moves forward. I was told he has slept through the first two nights and that is more than I can say for myself. Kolya’s third day into the move, I was informed he advocated for himself that he did not want a shower everyday. This made me chuckle and brought some joy knowing he has matured enough to communicate as such and make decisions about his care.

Adis and Kolya

Another adjustment is the change in transportation from the care home to his day program. For the past several years, Kolya has ridden with the same driver and classmates. This driver and Kolya have formed a bond. He knew who to expect each day and would ask for her if for some reason she was delayed in the morning. Now, he may have different drivers with the way things are set up. I’m hoping things will become more consistent for him.

Although Kolya knew that we would be together soon for the Starry Starry Night Gala Celebration & Fundraiser for the Morgan Autism Center, he wanted to see me before then, and of course I wanted to see him too. We FaceTimed and agreed that I would take him out for lunch yesterday. When I got to the care home, he had our address up in Google Earth. Naturally he wanted to come home but I explained that would happen in May to come and spend a night. I’m sure we will have another outing before the May gala event, not just because Kolya needs to see Mom but Mom needs to be with Kolya too. 

Kolya and Marian

In case you aren’t aware, Kolya loves to create artwork that has been auctioned off at previous fundraising events for Morgan Autism Center. I have shared some of his work on my Facebook page, Marian Aiken – Special Needs Parent. Here are a couple previous paintings. However, we must wait to see what is being created for this coming May event.