portrait of Shepley Family

John, Judy and Ashley

orange handprint

The Shepley Family

My wife Judy and I were not able to have children and wanted to share our love as a family.  We adopted a precious little girl, Ashley.  She is a Native Canadian from Alberta.  When her birth mother brought her to us she told us she had not taken any drugs or alcohol while she was pregnant.  We learned this was not the case and Ashley had Fetal Alcohol Syndrome.

We watched Ashley as she developed.  We noted that she did not develop as fast as she should.  She did not walk until she was 2 ½ years old.  Ashley is not properly developed in her brain, feet, mouth, nervous system, coordination, etc.  These things did not matter to us.  We had a treasured little girl who made us complete.Ashley is now 20 years old and we are both 65.  We are finding it more and more difficult to give our daughter the assistance she requires.In February 2007, I had three heart attacks resulting in triple bypass surgery.  When this happened Ashley was placed in emergency respite with Lambton County Developmental Services.  This was a blessing to us.  My wife was exhausted from the traveling back and forth to the hospitals in London and Newbury when I became ill, had my surgery and again shortly after when I was hospitalized with Pneumonia.My wife has back trouble as well as high blood pressure.  The effort she must exert to assist Ashley through her day is wearing her out.  She must visit the chiropractor twice a week due to the pressure Ashley exerts on her during transfers to and from her wheelchair.  My health has made it so I am not able to return to work.  I help out with Ashley as much as I can, but there are parts of her routine which are not suitable for a father to be helping his daughter with.Our extended family love Ashley, but they are not willing or able to help.  They tell us that we should put Ashley in a home, but that is not what we want for her at this time.Presently Ashley is in her last year of high school.  The Education Act states a person can attend high school for 7 years or until June of the year the student turns 21 years old.  This means that Ashley will be done school in June 2008.  At present there is no day program for her to attend after June 16th.  She will be home with us 24 hours a day.  We have applied for Stepping Stones and Passport funding through the Sarnia Lambton coordinated Access process.  We have also applied to Quad County Support Services for access to their day program.As well as our health deteriorating this year, so has hers.  This spring, Ashley was hospitalized for 10 days to have her seizure activity reviewed.  At this time all of her medication was discontinued and this sent her into a tail spin.  Although no seizure activity was observed, the disruption of her medication affected her body.  Ashley was no longer able to walk.  She is able to weight bear to transfer and will crawl about on her knees.  The nurses at the hospital were very grateful to my wife for being at the hospital to take care of Ashley.  They realized how much work she was and would not be able to give her the help she needed or other patients would not get the care they required.Since her hospital stay she has also lost many of her skills.  She is incontinent in the morning.  My wife is trying to “re toilet train” her. As a result of this she requires a bath each morning to prepare her for the day.  As we are doing a task with her we tell her “You need to do it yourself”, but we feel mean as we say it.Ashley is a high needs young lady who is not able or capable of taking care of herself in any way.  She has no motivation to initiate activities.  She requires constant 1:1 support for most activities of daily living.  She has limited communication, seizure activity, dependent on a wheelchair for mobility.  She is also physically aggressive and destructive.  She cannot be left with children or people with special needs.  At church she has gone over to a child and swatted them in the face, making the child’s eye glasses fly off.  She also will grab a wrist and twist a person’s arm.  This is not limited to children only.  My wife and I also are targets at times.  At times, while driving, Ashley will reach forward and put her arms around the neck of myself or my wife in the front seat.  She is able to do this no matter her seating position as she is so tall.As Ashley can/will not initiate activities we must assist her in this.  We will play UNO or other card games, board games, puzzles, etc.  If we did not do this, she would sit on the chair all day inactive.  It is emotionally draining to be continually coming up with something for her to do.Ashley still has enough use of her legs that she can pedal her three wheel bike in the good weather.  She is much slower, needing to put more effort into it and concentrate on the movements required.  She can no longer get on the bike herself.  She must be assisted in the transfer from the wheelchair to the bike, once again leaning on us for support.Our home is not conducive to Ashley’s wheelchair so a “transit” chair has been purchased to use in our home.  Although this is better for her to get around the house, it does not give her body the support of her custom fitted wheelchair.  When we go on outings her wheelchair must be put into the trunk of our car.  My wife is frail and I am not to lift heavy items since my triple by pass, but we must take her chair with us.Prior to the hospitalization, Ashley leaned on us for support, putting a lot of her weight on us when she walked.  She required more and more support from us.  She manoeuvered around the house crawling on her knees.  Due to our physical limitation there is serious concern for our personal well being.  When any personal care and/or transferring is done, Ashley (a big girl of 5’7” and 170 pounds) leans on us heavily for support.  This is very draining physically.We make use of three respite options available to us.  We try to book Ashley in for respite three out of four weekends.  This gives us time to recuperate to be ready for another week of strenuous activity.  This is the only time we actually have for ourselves.  We used to entertain regularly (every other weekend) but with Ashley’s physical needs and aggression we only have the energy to do this every couple of months.  Our only other rest time is Sunday after church and lunch when we all lay down for a nap.There are problem issues at school.  As she is at home, she is also non compliant at school.  She has also been physically aggressive which has resulted in her being suspended.  This is added weight for us.  The time that she is at school is our time to regroup and re-energize for the day.  When she is not able to attend school five days a week we are not able to do this.  We have even received phone calls from the school when we have been away on vacation and Ashley has been in respite.  This does not make for a happy time away.Ashley’s school day begins at 5:00am as it takes two hours to prepare for the bus.  After her mother gets her up, bathes her, gives her breakfast and medication, I take her out to the bus which arrives at 6:55am.  She arrives home at 3:30pm and we start the process all over again.  While she is at school we do not have time to rest as we have things we must do, such as grocery shopping, medical appointments, etc.Both my wife and I are patient and long suffering, but the load is very stressing, physically and emotionally, on both of us, as well as Ashley and increasing as all of us get older.  Our whole life has changed.  We no longer have the people over we used to or are able to go to their home.  We know some of our friends visit less because they know that we have our hands full with Ashley and do not wish to burden us with entertaining them.Tears come to my wife’s face regularly.  She is fatigued from not only the physical exertion but also the emotional stress.  We are concerned for Ashley’s happiness.  We want her home with us as long as possible.  We know that she also needs to spend time with her peers, but we do not have the means to provide this to her when school is over.  My wife cries wondering if we did the right thing, adopting Ashley.  We had wanted to adopt a second child, but we are so happy we did not.  We would not be able to give the other child the attention he/she deserved.  We look to the future:  how will Ashley be taken care of when one or both of us are gone?We feel alone, like we are running into brick walls.  We know that others must feel the same way. Just last month, we started a family support network.  Although we had a low turn out we did have calls from families saying they wished to come, but were unable.  It is our hope to share stories, information and offer each other comfort and support.Any and all support organizations are not able to provide more as they are hard hit for finances themselves.  We are adjusting to a reduced income as we are now pensioners.  We live in a rural area which limits the opportunities for us as well as Ashley.As Ashley’s parents we desire the best for her because of our love for her.  We feel the best for her would be to stay in our home with the necessary supports (financial, emotional, adaptive aids, etc) required for day to day living.

Update:  Ashely graduated from high school and received some Passport funding to help her participate more in the community.  It has helped John and Judy partially realize their dream of keeping their daughter home with them.  

John and Judy Shepley

March 6, 2010