Wednesday, October 17, 2012

Guest Post: What I Want to Know

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


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


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

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



  1. My 3 yr old daughter is developmentally delayed due to a brain injury, she does not have DS, but I hope you don't mind me reading and commenting. So many of the topics you cover feel like the apply to me just the same. Thank you Adina for sharing this interview, and thank you to the Mom who answered. It's so hard not to get caught up in thinking about the future, and it's both difficult and comforting to get a little bit of insight. The specific topic I wanted to comment on is actually about discipline. I struggle so much with this, as it is hard for me to know if my daughter is acting out, is in pain, if she understands things, and then simply how much control she has physically over herself. To be totally crass, I don't want to raise a brat who thinks she's the queen of the world. But I also am terrified of disciplining her for something she cannot control, for yelling out because she is in pain, or for physically reacting (kicking) to something that I just can't figure out but is her only way of reacting. It seems just when we have it figured out, things change. Now in her case, she is extremely delayed, probably is about 3-6 months both physically and mentally, so everyone is in a different boat of course. But as she physically gets bigger and stronger, it's very top of mind that we need to work on this. So I just found your point interesting and appreciate your thoughts about the importance of discipline and expectations, in spite of the hurdles. Again, thank you for sharing!

  2. You brought tears to my eyes. I was so glad she wrote this as well. We always want to do the best we can as parents. I always underestimate David's abilities/capabilities. I am lucky he goes to daycare I tell them to treat his like every other kid and sure enough he can follow directions, clean up, and sit in circle time. Who knew?? I hope you have an OT or developmental specialist that can give you some tools or insight on this one. Hugs - Adina


Note: Only a member of this blog may post a comment.