Wednesday, September 21, 2011

Wordless{ish} Wednesday: Happy Birthday Eslea

Today Eslea celebrates what is to be the first of many birthdays.
Today she is ONE!

I have tried several times to write a post that expresses my thoughts around this time. How Eslea has helped this family to go through the most amazing changes in only a year.
But each time the words start to flow, so do the tears.
Today is not a day for tears.
Today is a day for least for most of us that is.

So later. Later I will write my feelings about this day.
For now, I will just say...

Happy First Birthday Buggie!!

Today started as any other with you making everyone else's day brighter from the very start.

Today was the second celebration for you this week so we decided to keep it small.
Just the four of us because today is offically your birthday!
Your sister's homemade card was perfect.
There will be time for the balloons, presents and a larger gathering later.

Jason making sure to remove all of the hard candy before Eslea gets her hands on it.
You were not sure what to make of the cupcake and icing.

Hopefully we'll have better luck with your birthday cake in a few days.

Today was nice. Just us.
It was fun...

at least until the party hats came out.

Maybe it WAS a day for tears...those darn hats.

Sister to the rescue.

Happy Birthday Eslea!

Your big celebration is in just a few days!
I promise, no party hats at that one (maybe).


Wednesday, September 14, 2011

Wordless{ish} Wednesday: Peek-a-boo

Peek-a-boo is a surefire way to get Eslea's giggle box going. Lately, she enjoys being the pee-a-boo-er as much as the peek-a-boo-ee. Even though we lose audio a few seconds into the recording, we were fortunate to have the phone close by...

Tuesday, September 13, 2011

If I could do it all over again...

When we first found out Eslea had down syndrome, I just wanted to be left alone. I didn't want to talk to other mothers or meet other babies.
I was scared. I was scared of what I'd see.
I was scared of the future that was laid before me.
When I was finally ready, I met so many new people. Through local contacts, blogging and networking friends, I have met the most extraordinary families. Families that adore each of our children...brothers...sisters..cousins..that carry that extra chromosome.
Amazingly though, there were a few people Jason and I knew before having Eslea that also had a child with down syndrome. These were people we knew in our past and played with as childhood friends. Recently, and even more amazing, another baby has joined our "club" and again, it's someone we knew previously.
What is the point of this you ask?...I'm getting there.
Having a child with designer genes is like being in a club. A very exclusive club with proud members that welcome new members with open arms. Most often when the new members arrive, they are people we have yet to met. Another family joined to us through an extra chromosome.
Yet, occasionally, new members arrive in the form of someone we already know. Maybe someone we have known for years. These new members...the one's already in our lives however small a role, these are the ones we so strongly want to reach out to.
But we know the early weeks are the hardest. Remember those days? Those weeks?
Doubt. Anxiety. Fear. Ignorance. All overtaking us.
What do you say?  If you could talk to your past self at those moments...what words would you chose?

I would do it differently. I would get plugged in sooner and meet another child with DS as soon as possible.
I would battle the IGNORANCE head on. I would see for myself the truth and capabilities.

I hope to offer that to others. Of course, Eslea would be my IGNORANCE fighter. If those parents could just meet her. Hold her. Listen to her laugh. Watch her try to crawl for toys. Smell her. Play games with her.
Views would change. Ignorance, doubt, fear, anxiety..they diminish around that baby.
I swear she has magic powers.

In the beginning, I was so scared of how "different" she would be, that now I am amazed by exactly how "typical" she really is. She is typical. She is different. She sports designer genes. She is perfect.

Please do let me know the wisdom you would share with your former self from those early days. It's important. I have new parents to meet and I want to do right by you all.

Don't forget to read the post about Pharmacology because I want your input. Also, I still need guest bloggers for the new site. For those that have already responded, thank you. Look for an email from me soon!


Friday, September 9, 2011

My Thoughts on Pharmacology & Down Syndrome

A few months ago, an article was published in the New York Times about a father whose career path in neuroscience was led in a different direction after the birth of his daughter with Down syndrome. This article also has information in regards to cognitive findings for individuals with down syndrome and the possibility of future drug interactions.
Since then, people have been asking me my opinion on this. It has taken some time for me to respond. I have found myself typing this post again and again. I am solid in my beliefs yet worried how they may be conveyed and interpreted.
I will say, thank you for your messages and emails, I love reading all of them. In an effort to address this, I'm just going to post my response. I am honored that you find my opinion worthy. I hope you all will accept this mass response; if not, I can email you each with a this post. Just sayin'.

Now ...down to the nitty gritty.

When Eslea was born I did the same as most parents in this situation, I began researching. I wanted all the information available to me that was current on Down syndrome. Most likely the difference from other parents is that I already had a very vast resource on hand in regards to that topic.
Lucky for me, I also have resources and knowledge of other aspects of human nature...such as ADHD, Alzheimer’s, and name a few. Before becoming a school counselor, I worked in the mental health system for years as a therapist. Although it is not necessary in my current position, I still maintain my license as a professional counselor; to do so I attend workshops and conferences yearly to become familiar with updated findings and information.
I say this because through my experiences I have become familiar with the pros and cons of utilizing medications in treatment and prevention. I do not feel that medication is always the answer. I truly believe that there are steps that all individuals can take to improve their own behaviors, cognitions and/or emotions.
BUT for many people even after taking those steps, they still need pharmaceutical interventions. I will always be in favor of taking any steps that will assist a person in achieving a "level playing field" in development or some other aspects of life.
If someone is diagnosed with diabetes, of course they should be allowed to have their insulin. That is a medical issue. Yet too often we forget that other areas are also "medical" issues.
A child with ADHD...yes he can learn behavioral strategies to control his thoughts and thus his impulses. Yet the movement from thoughts to reactions happens so quickly that it makes impulses difficult to control. The ability for these kids to utilize fine motor skills is a struggle which can often be seen in their writing. These "symptoms" are a result of neurological issues. Frankly, that is nothing to be ashamed of. That child deserves a chance to learn and grow as any other child. If he requires medications to help him do so, so be it.
When there is a medical issue stunting growth and development and life functions, YES, I believe that medications may be necessary. Yes...I also believe that a person should still try to find the source of any issues and work to develop their own coping strategies that do not include medications...yet...medications may still be needed to fill the gap that is left. The gap that separates that person from, well… their full potential in life.
The day Eslea was born, I began to research Down syndrome. I began to study behaviors, cognitive developmental milestones, social interactions, etc that are specifically related to children with Down syndrome. I was not looking for just the most common treatments and therapies. No, as a trained clinical counselor, I was looking for patterns. This is exactly what I found. I noticed early on that many behaviors and learning patterns of kids with DS resembled those of children with ADHD. I also noticed similar (and fewer) characteristics to those of OCD (obsessive compulsive disorder) and Alzheimer’s.
So, early on I started working with Eslea as if she was a child with ADHD. Short steps, repetitive learning, focused learning, adapting to new behaviors, all of this over and over again. I focused mainly on cognitive and social development with Eslea while also working to help practice at home the skills she was learning through her SLP, OT and PT. Doing all of this has made such a difference in her development. She is just shy of hitting the developmental milestones of her peers at the same time as they. If it wasn't for her short chubby little arms/legs in addition to the months she had to go without tummy time as we awaited her heart surgery, she would be so much further ahead.
Yet as a parent I am frustrated because I have always known somewhere deep in my heart that she has a glitch in her processing of information. Something that her ADHD type traits are assisting in to set up blocks for her. Eslea is attentive and you can tell she likes to problem solve. Yet she gets very frustrated and is obviously overcome with stimuli at times.
Now...why am I writing about this now? Why have I finally decided to give my thoughts on the article that was published nearly two months ago?
Because it looks like very soon there will be pharmaceutical interventions available for the Down syndrome community. One organization that I receive emails from is the Down Syndrome Research and Treatment Foundation. Their mission is to promote biomedical research to one day find treatments to not cure Down syndrome ,but instead to help improve memory, speech, learning and the overall quality of life. After years of research, it finally seems as if the pharmaceutical companies will soon provide a possible treatment. You can view the press release HERE. Unfortunately Eslea is not old enough to participate in the clinical trials, but maybe you know someone that may be eligible.
For those who want to know, YES, when it becomes available I will allow Eslea to take medications.
I love Eslea. She is perfect. She is funny, unique, and beautiful. Down syndrome is not something that needs to be cured. It is not something that needs to be eliminated. But, as with any other medical condition, I do believe that those with DS deserve the same chance to learn, grow and function as any other human being. Just as with ADHD and diabetes, she may only need an outside agent to help her be the best kid she can be.
It will not change the person that is Eslea.
She will still sport that extra 21st chromosome. She will still have stubby little arms and short legs. She will still have almond eyes and a flat nose. She will still be Eslea. Designer genes and all.

I would love to know your opinions and read your comments on this topic. Feel free to post below or send me an email: or

Wednesday, September 7, 2011

A New Kind of Blog

I want to share something ...I'm working on a new website/blog. It is devoted exclusively to all things Down Syndrome. Research, resources, blog hoppin' and features, guest bloggers, weekly guest posts from therapists, expert Q&A, etc.
I think you guys will love it.
I do need your help though.
I will be featuring a guest family every week and I want YOU to be one of the families. Interested? Just send me a message on facebook or email me for the information ( or ). The only requirement is that you have a child or sibling with down syndrome OR you sport that beautiful extra chromosome yourself. I'm looking for all ages. This will not be about one DS family...this will be about the DS community.
I'm so darn excited. Can you tell?
That's why I've been so slack lately on this blog. Getting things together for the new one. I want to debut it for October so get those emails to me and be thinking about your post.

Note added: Do not forget when sending me an email to include a link to your blog. Thanks!

Friday, September 2, 2011

The Stupid Things People Say

Dear People Who Say Stupid Things,

It seems lately I have been surrounded by ignorance. Please forgive me for starting that way. But in all honesty, that is the feeling. Intelligent people saying ignorant things.
If you read my most recent facebook status, you will find this:

Seriously people...why must you continue to use the word "retard"? Why aren't you telling your friends to stop using the word? It makes smart people sound ignorant. Oh and did "mean it that way" just by using the word as a negative slang you "meant it that way".
In the course of five minutes, I found several of my facebook friends either using the r-word themselves or responding in a lighthearted way to someone on their wall that used the word. Skimming over the word like it was unnoticed or unimportant. Maybe it is to them. Maybe it's not important to you.
Just know, it matters to me and it matters to Eslea.

Whenever I take the time to point out to someone that they should not use that word because it is offensive to me, to my daughter, and to thousands of others, I tend to get the same response..."I didn't mean it that way".
People...the context in which you used the word clearly shows that you "meant" it that way.
That computer you just called "retarded"...I can bet you that it is not "slow in development". Which by the way is the actual definition of the word.
When you post on a picture the descriptive words "looks retarded", you are implying that someone looks less then "normal". That somehow a person that is "retarded" could not ever possibly look okay in a picture.
I would also say that people need to use that word carefully. Know the exact meaning and use it in the appropriate context. Using it in regards to your teacher (or boss, or ex boy friend) who you happen to dislike, is not correct. Quite frankly, unless you sat next to me in my intellectual assessment course...I would say you most likely are not going to ever use the word correctly. So  maybe you should just not use it at all.

To take the word and shorten it to "retard" basically says that you just denied that person of being a person. That cute little girl in pigtails is no longer a cute little girl. Nope, she  is a "retard".
Oh, but you didn't use that word in reference to her directly? Well please explain to me exactly who/what are you comparing whatever you just called a "retard" to?

I understand that words only have as much power as we give them.
This word, "retard",  has power. It no longer is used in reference to "delayed development". Instead it is used to imply that something is less then "normal" and perhaps unworthy or even...unnecessary.

Why am I on this kick today? Because I've heard it used way too much lately.
Around me. Around my Eslea. By Friends. By Students. By Family Members.
I understand it is a hard habit to break. But it is a habit that must be broken.
If you are old enough to have a facebook account with updated pictures and statuses, you are old enough to make the decision to not degrade an entire population of human beings with one derogatory word.

That is it. I have said my peace.
Just be warned....I run into people all the time that give me plenty of material to use under this same title post.

Since that is now off my chest (breathing out), it's time to enjoy the weekend.
Happy Friday people!!