Thursday, November 7, 2013

The Aaaays to the Queues, Part II

At long last, here's part II of my Q&A.  Due to my inherent long-windedness, I have had to break this into yet another part, which I will post some time next week. 

Q.  What kinds of challenges did you guys face when Sammi was a newborn? Any feeding issues or health problems?

A. Samantha was born with a complete AV canal defect of her heart, which meant she needed to have open heart surgery at 4 months old.  As a result, she was a very, very sleepy baby, and that made feeding quite difficult.  We had to try every trick in the book to keep her awake for feedings, and we were obsessive about her weight gain.  We tried flicking her heels, using cold wet washcloths, etc. We were persistent, and while it seemed like torture (hers) and that every waking hour (ours) was spent trying to get her to feed, it paid off and she gained weight very well.  She never went into actual heart failure, and her surgery went pretty smoothly.  We had to go home from the hospital with oxygen for a few weeks, but that was the only issue. 

She had some sort of reflux from her earliest days through age 2.  Every meal came back up if she was not kept vertical and still for at least a half an hour afterwards.  She didn't have any discomfort or pain around this, so we never treated it with anything but patience. 

Other feeding issues were that Samantha wouldn't chew her food as she began to take in solids.  She'd try to swallow her food whole, then choke, so we kept her on Stage 2 baby foods and formula for the most part, along with foods that were cut into teeny, tiny bits, until she was 2 years old when things seemed to resolve themselves.  Coincidentally (perhaps), that was also the exact time that her reflux stopped, likely due to the change in diet as well as her newly-vertical stance (she began walking at 21 months).

Q.  When you sign Sammi up for extra curricular activities (at the library for example) do you do so based on her chronological age so she could be with her peers or her developmental age so her abilities would be similar to the other kids?

A.  Great question!  We didn't do the library-group thing, or any group things, for quite some time - she had some sensory issues around group activities, and would balk at them.  However, in the last 2 years, I have signed her up for Challenger baseball and TOPSoccer, both designed for children with special needs.  I would never dream of putting her into a group of her same-age peers at this point, to be honest.  I'd rather she not get frustrated and shut down, and rather, at least at this point, she not get bogged down by rules and regs.  I prefer that things are introduced to her as fun, and give her the gentle push she needs to learn.  I'm not sure how things will work as she grows up, yet.  Have to take each day as it comes.   

Q.  Today what scares you more and why - that Sammi will be able and want to live indepently or that she will really live with you into adulthood?

A.  Oh, wow...  Let's just say that I fully believe that Sammi will be able to live independently.  Let's also just say that I truly can't imagine not having her by my side and don't want her to go.  Maybe she can live next door...  :-)

Q.  I'd love to hear what you think about intellectual disability - how is it the same as what you thought upon diagnosis and how is it different?

A.  Hmmm...intellectual disability was kind of terrifying to me long before Sammi's birth and diagnosis.  I think we all shy away from things that we don't understand, and that's exactly where I was.  However, I also always innately knew that people with ID are still people, still have feelings, still need care, love and attention.  I managed a children's clothing store for 3 years, several years before I had Sammi.  I loved the job, and loved the children who came in as well as (most of) their parents.  One mom, in particular, always came in to buy for her 5 year old daughter who she said had a disability.  The love this mother felt for her daughter, who I had not yet met, was so obvious in how she spoke of her, in the care she took selecting her clothes, in the money spent (that store was not cheap...).  I loved helping her find things I thought would work well for the little girl's hard-to-fit body, and I think my heart just about burst on the day that she actually brought her into the store.  I wanted nothing more than to spend every second with her, playing with her, hugging her, making that connection.  And her mother noticed.  And it was obvious that she didn't get that kind of reaction to her daughter as often as she should.  I knew, then, how de-valued people with ID probably are in the world, and how much that needed to change.  I felt protective.  Now, after Samantha, I understand all of that and so, so much more.  I am certainly no longer afraid of intellectual disability, and try to advocate through my blog, Facebook, and my every day life to help change public perception and fear of the unknown.  

Q.  How many adults with Ds have you met and does meeting an adult with Ds scare you or comfort you?

A.  I have met countless adults with Ds.  In the area in which I live, there is a huge Down syndrome population.  Surprisingly, meeting the adults has always been comforting to me.  My first real encounter came about a year after Samantha's birth.  I attended the ARC picnic one summer, mostly because I needed to bite the bullet and get out there and catch a glimpse of Sammi's future.  Samantha and I went on our own and soon and struck up a conversation with a remarkable woman with Down syndrome who was about the same age as me.  I came away from that encounter feeling overwhelmed with emotion, as if I had suddenly decompressed after a year of worry and fear.  Actually, that description isn't far from the reality of the situation.  I suddenly knew that everything would be okay, that Samantha had a bright future, and that I was no longer so afraid.  My husband began working for Special Olympics soon after that, and the exposure and catharsis continued.  I saw people of all abilities, some verbal, some non-verbal, some with health issues, some with behavior issues.  But I was never scared of the future.  Everyone has their place in their families, in the community, in the world.



Emily said...

Great questions and answers!

Jenny said...

This was excellent, loved it!

Anna Theurer said...

Love the questions and great answers to them.