I am lucky enough to know a handful of mom's who have adult children with Down Syndrome. I always have so many questions for the been there/done it moms. So I took an opportunity to do an email interview with one of those moms. Her daugther is 30 years old so this mom knows a lot.
This lovely mom is choosing to be anonymous because she would never want to embarrass her daughter or put too much out there about her. She is a wonderful caring mom who is very proud of her daughter. But I probably limited her based on the questions I asked. If you would like to know more add your questions to the comment section below.
Tell me when you accepted her as she is. When are you sad? When does DS bother you? When does it not bother you?
I believe there will always be a sadness for my daughter and our family
regarding her diagnosis. Obviously when she was young she certainly
was not aware of her diagnosis. But even by first and second grade she
was keenly aware that she could not perform Math skills like other kids
did or ride a bike like others her age did. It caused her frustration but not
sadness. However, by her late teens she was quite aware of her diagnosis
and says she “hates” having Down Syndrome. She gets frustrated with
her constant minor health problems and just yesterday she said she was
almost 30 and had no husband or no family. She also developed anxiety
issues in her late teens and I think this was when she truly became aware
of her disability. It was very, very painful for her to have her graduating
class leave the school and go on to college, jobs etc when she stayed
behind.
I am not sure that I ever did not accept her for who she was. She
certainly was not the child I had wanted or anticipated but as a nurse it
would have been impossible to be in denial. I grieved the loss of the
child I wanted, grieved her birth and the loss of what I might call the
“impossible dream”. I actually had no real idea of what her future would
look like or ours for that matter. I just did what I had to do to keep her as
healthy and stimulated as possible.
At this ripe old age of 60 my sadness is often fleeting and unexpected.
Like watching one of my nieces hold their newborn. Just yesterday I
heard a mother chastising her “typical” daughter in a store. I thought
“with sadness” how I would enjoy be able to shop with my daughter and have
her enjoy it. Often it is seeing a typical “mother - daughter relationship”.
One of my sister’s has 2 grown daughters and my other sister has 3
daughters. I do often find myself jealous and sad when looking at the fun
my younger sister has with her 3 daughters who are 15, 22 & 25 yrs. old.
I believe there is an underlying sadness that will always be there, to a
degree, but it does not control me or define me. I do not think that her
birth and diagnosis has really changed who I am but I have worked very
hard at trying to keep our family’s life as “normal” as possible. I do
believe that her diagnosis has changed my husband and that her
diagnosis has been harder for him to accept.
My daughter lives with us and will until we are not able to care for her and then
she will live with one of her brothers. She does almost everything with
us and is an integral part of our family. Most of the time I do not even
think about her having D.S. She is who she is. However I am keenly
aware at this age in our life that we are very limited in what we can do
compared to my friends. Some of our friends are retired and many
others are ramping their careers down. At the same time we still have a
dependent at home who requires a significant amount of time, effort and
money.
Hardest times in your life with DS? Health issues? School?
I believe the hardest time in our life was definitely when she was born
and adjusting to our new “normal”. She had constant doctor’s appts. in
spite of the fact that she was really quite healthy. My boys were very,
very active and I also had elderly parents at the time who also needed
my attention. We were just very busy and adding her appts. and
therapies just made life more complicated.
After age 3 certainly there were many hard days dealing with the
schools. But for the most part we were just a family raising children and
fit in where ever we went. Now as we age I again feel that this is a hard
time as we face our own mortality with a disabled dependent adult. We
just updated our will and that was an emotional process as we needed to
really iron out everything with our boys . It also required us to figure out
how much money we spend on her/year to ensure we have enough
money saved in the event of our death.
Our daughter is now nearing 30 years of age.It is very hard to find something
for her to do that is stimulating for her. She does very well but does
not seem to have the stamina or emotional maturity to work a “real” job.
She is really too high functioning to work in a sheltered work shop and
can be non-compliant. We have been very fortunate to have her
volunteer in her local school district in the younger age classrooms and
the library. She also volunteers at the local public library. This keeps her
busy for about 20 hours/week. So making sure she has a stimulating
place to spend part of her day is always a great deal of work each fall.
She also participates in dance class and a cooking class but building her
schedule from the ground up is always a challenge and one I take very
seriously. Only because she can read very well and because her
communication skills are so good can she “work” in the library and
school environments.
Medically we have never been crisis oriented with her health. She
generally sees the doctor every 3 months for a medication review and
just to keep tabs on her health. She has GERD, anxiety and multiple
sinus infections but these really are minor inconveniences not major
health problems. She sees a psychiatrist every 2 months so she has
someone impartial to listen to her problems and for medication reviews.
How did Down Syndrome change you?
I believe that having a daughter with Down Syndrome has made me a
much more compassionate person. I had NO association with anyone
who was mentally disabled as a child and actually only casually knew
someone with polio. So this was a whole new world for me. As a nurse I
cared for physically disabled patients but never once did I have a
developmentally disabled patient. I certainly do not take for granted the
health of newborn babies. I am a more open, less critical person. I have
met many wonderful people on this journey that I would have never met
had I not had my daughter. Many of these people are top notch teachers,
physicians and other professionals.
Are you or your daughter active in any social activities related to DS?
Yes and no. I was very active in the Down Syndrome Association when
she was young. I actually ran it for 4 years. Now I have a very casual
relationship with the organization but rarely attend events. My daughter takes a
special needs dance class and all the girls/women happen to have Down
Syndrome. She also takes a special needs cooking class but no one else
in the class has DS, but they all have some type of developmental
disability. We have been members of several organizations over the
years related to DS. Now as an adult we tend to join groups that are for
those with disabilities but not limited to those with DS. She attends a
special needs dance offered every quarter, also. I helped open a home
for mildly developmentally disabled clients approximately 12 years ago.
Although I have not been active in this non-profit housing for about 6
years I am still in touch with them. They have several residents with
D.S. and many social activities. We could be very involved in this group
but basically it is a long drive and we choose to do activities that are
closer and those that involve friends and family.
Best thing you ever did for your daughter. Advice you would give.
Probably the best thing I ever did for my daughter was not to make
excuses for her, I held her to a high standard of behavior. I felt she had
enough strikes against her without being a spoiled brat on top of her
other problems. I also have exposed her to all sorts of different social
situations where acting up was not acceptable, black tie dinners,
Broadway plays, airplanes etc..I have always found that parents of
handicapped children seem to be reluctant to discipline them. If she
misbehaved she was removed and not allowed to participate until she
could behave. I have literally been eating with several teens/parents of
girls with DS who cleared that area of a restaurant. I am truly the only
person I know who will stop and discipline my daughter. Most of my friends
allow their children/adults to interrupt, speak very loudly, and generally
get away with murder. I attribute it to the parents being so used to poor
manners that they do not recognize it anymore or just due to the parents
being so warn out that they let things slide. In the end this only serves to
limit the possibilities for their children. I care deeply for all these people
but do not understand why they are so reluctant to enforce common
sense social boundaries.
Biggest mistake you made, if you had a "do over" what would you
change.
I think the biggest mistake I made was letting her weight and diet
get away from me. She was always a good eater but never gained weight
easily until she was about 7 years old. During her teen years she packed
on the pounds and then after her brothers left the house we started to eat
out more. I should have nipped it in the bud when the weight gain first
started and really emphasized healthy eating and adequate exercise.
Also she is very emotionally dependent on me. This developed in the
late teen years and I am not sure how I could have intervened to prevent
this from happening but it is something for people to watch for in their
adolescents. It seems that many teens with DS either develop anxiety
issues or OCD tendencies. She has seen a psychiatrist for about 14
years and is on mediation for anxiety.
Does your daughter know she has down syndrome? If so when
and how did you tell her, if not why not?
As mentioned before she does know she has DS and has for many
years. I do not believe we ever had a sit-down discussion about it.
Certainly it was probably mentioned at every doctors appt. So it sure
would have been hard to conceal it. The fact that she had DS was
nothing that we ever hid, it is just part of who she was and is. She knew
or sensed that she looked different and learned slower than her peers by
about 2 nd grade and would often ask questions about it. I always
answered honestly and briefly. The higher functioning people with DS
are usually aware of their disability and understand its life implications.
The people with DS that are severely mentally handicapped or at the
low end of the moderately mentally handicapped most likely are not
aware that they have DS. Or if they know they have DS they are not
truly aware of their own limitations. Actually of all of her friends
with DS only one other person really understands they have DS. This
“understanding” is what I believe can often lead to anxiety and
depression.
