A Letter from Parker...

Hi!

My name is Parker, and I have Down Syndrome and Klinefelter's Syndrome.  But... I am so much more than my diagnoses!  I am sweet, feisty, snuggly, happy, stubborn, and energetic.  I love reading books with Mommy and Daddy, getting kisses from my puppy, Chase, listening to music, drinking milk, and eating fruit.  I especially love bananas and apples!

I hope that when you look at me, you see a person.  A person who has feelings, ambitions, fears, insecurities, and dreams.  My hope is that when you look at me...you see PARKER, not Down Syndrome.

Please be patient with my Mommy and Daddy.  They love me so much that it sometimes makes them a little crazy and overprotective.  They just want everyone to SEE me, too.  When you see them with me, you can stare and wonder and be curious...but please don't be rude! Come say hi to us! Get to know me!

For October Down Syndrome Awareness Month, I hope that you ask questions and learn about me.  I hope that you will love me for who I am.  I hope that you will give me a chance.

Love,

Parker

Nonna, Grandpa, Beer and Birthday!

Right after we got home from the MRI, Nonna and Grandpa arrived!  Our home has now been visited by everyone in both of our families! Yay!  We spent Friday night ordering in pizza and watching a movie! 

Saturday was filled with traveling all over the Chicago area.  We dropped off Nonna, Grandpa, and Auntie Morgan at a wedding, and took off to Oswego for a beer festival with Matt's colleague and his family.  It was a BEAUTIFUL day- and we had a great time! 

We ended the weekend with our good friend Ryan's birthday! Of course, Parker got to see his best buddy Ryan Jr.  I can't believe that our boys are 10 months old now! They are so close to their first birthdays...only a day apart from one another! 

If only the weekends could be longer!

MRI/MRA

Today was the dreaded day --Parker's first time under general anesthesia for his MRI/MRA brain, eye orbit, and blood vessel scans.  I admittedly had a lot of fear about this for a lot of different reasons.  First, it is something that can be a little more dangerous for children with Down Syndrome because of their varying heart issues and low muscle tone.  Secondly, general anesthesia is something that neither Matt nor myself have ever experienced.  Expecting a 9 month old to deal with that was anxiety-inducing.  Lastly....HOW do you withhold food from a baby? For this one, I decided to wake P up at 3:45am for a bottle so the drive there and prep before anesthesia was not so painful!

Everyone at Lurie Children's (downtown Chicago) was great! They were very good with Parker-- obviously having a lot of experience with children (and their nervous parents).  Parker got to wear a super cute tiger hospital gown, and they waited until after he was under anesthesia to do any IVs and shots.  It made me feel so much better to know that he wasn't in any pain!

I keep battling with how to feel about and describe our anesthesiologist.  On one hand, he exhibited a lot of the same characteristics as the other doctors and nurses- very friendly, good with children, and used parent-friendly language.  On the other hand, he clearly had no training in speaking with parents of a child with special needs.  He must have called Parker a "Downs Kid" about 15 times.  He also proceeded to tell us that there was a 50-50 chance of needing to be intubation, and that as parents of a "Downs Kid," we should expect to have complications any time he has anything done like this that might result in us staying over night at the hospital.  He implied that our lives would always be much more difficult because of Parker.  After the procedure was done and everything was fine, I ended up asking the nurse we had to pass along a message to the staff about using "person-first language" because the tone and word choices of this anesthesiologist rubbed us the wrong way. 

I know that person-first language seems so minor to a lot of people.  I just wish that everyone could understand why it matters so much.  It demonstrates that you are truly viewing the person before the condition.  The way this doctor said "Downs Kid" really made me feel like he didn't see Parker as a person.  I am sure that he does that as a defense mechanism in his job, but still.  It has been on my mind since!

Overall, the day was a success.  Parker's neurologist took time out of her evening to call us on Friday night to tell us that all looked well on his scans according to the radiologist.  She will be going over them again Thursday to be sure!  Essentially, all that was noted was a smaller area at the base of the head to watch as he gets older (typical with DS), and longer eye orbits (consistent with nearsightedness).  We were so thankful that she was able to do this for us (without us asking) before the weekend!

Lots of relief here!

GiGi's September

We had SO much fun last weekend at GiGi's! We got to see Miss Hilary and Miss Lisa, and all of Parker's friends.  He got to show off his pre-crawl, and all of the kids got to play on their Rody toys! I love this place, these moms, and all of the ladies who care about Parker so much.  I leave with a full heart every time.

Parker's Pre-Crawl!!!!

Momma-Bear!

I am having a super hard time wearing my mommy hat and teacher hat at the same time today.  As a teacher, I understand well what it is like to be responsible for "all" children, or at least for your own class.  I also understand what it is like to be protective of them, and want to do what is best for them.  On the flip side, I understand the fierce and undying commitment one has to her own children.

So what happens when the needs of my own baby seemingly go against the needs of others?  I try to be flexible, empathetic, and generous when I am able.  Today, I hit a wall with being the nice teacher-mama.

One of Parker's daycare teachers let me know third-hand today that the director wanted her to tell me that I will need to do my Thursday developmental therapy sessions with Parker in her office.  The reason?  Because his therapist used toys with sounds/music during therapy that other teachers complained about, as it was nap time for most kids in the daycare.

Now, at first glance, this seems somewhat reasonable to an outsider.  I know, because I've thought about it for hours (once my momma-bear rage settled).  

However, I am not willing to siphon my baby off to the back office during his therapy, and set a trend for exclusion.  This office is about the size of a closet, and excluded from Parker's class (and all of the others).  His most effective environment is his natural environment.  Who knows? Other kids may learn something too! And Parker certainly learns from them.  

Additionally, his teachers have been somewhat overwhelmed with the start of the year and have been a bit apathetic to learning about him.  Therapy prompts them to ask questions and LEARN about his development, which in reality, is knowledge that will help them understand all children.  

Lastly, I was sitting with Parker and his therapist the whole time.  Two babies in the room were two feet from us, and didn't stir during their naps.  

I think it was wrong for her to try and tell me third-hand through one of Parker's teachers, and to not give me any other options...like a phonecall saying "Hi Megan, would you mind letting your therapist know that it is the daycare's nap time, and to steer clear of the noisy toys?"  How easy could that have been?  I like to think I am pretty reasonable, and would have been agreeable to this, even knowing that musical, light-up toys are Parker's biggest motivators. 

Thank God for the ability to write this out, and remove some of my emotion so that when I speak to her, I can sound like a rational, intelligent adult instead of a furious nutcase. 

 Whew!

New Daycare

I remember so vividly being terrified of sending my baby to daycare. I wrote about it often, thought about it constantly, and dreaded going back to work after having Parker. But we were fortunate enough to have two teachers that absolutely love Parker to this day. Saying goodbye to them was one of the hardest “mommy moments” I have had in a while. With Matt’s new job, driving Parker an hour west and then an hour back east to our jobs would equal 3-4 hours of driving a day, which is just too much for all three of us. Even though Parker would have “aged up” into a new class eventually, it is still so hard to leave people you trust and have grown to care about. All of us cried, and all of us wished it could be another way…:(

Parker’s new daycare is about one minute from my work. As comforting as I thought this would be, it is actually very distracting! When Parker was an hour away at the Sears Daycare, I could more easily push away the urge to run over and snuggle him. I also came to terms with not being at his therapies because there was no other choice. With having him so close, I find myself wanting to be there during my lunch and rushing to get him after school. I do love getting more time with him, though!

The daycare he is at is brand new, and on the local high school campus…which has its perks and pitfalls. It is clean and fresh, and follows my school district schedule. On the other hand, all of the procedures for driving around high school kids, picking up, supplies, etc. are both different for us and new for the staff there. We are still getting used to the changes!

His teachers are nice, but since they are new to the building, and the kids are all new to them, they are overwhelmed….and I don’t feel like they are forming a particularly close bond with Parker (or me) quite yet. They do the best they can to show him attention, but they don’t have the same level of intensity and desire to learn about him and help him in the ways we got used to.

I am hoping as we settle into the school year, we will get closer to his teachers, and let go of the hurt of leaving great people. I am finding it interesting to try and wear my teacher hat and parent hat at the same time and empathize with everyone involved. We will see how it goes!

Therapy Re-Mix

One big change caused by moving is therapy placements. Early Intervention, the state program that assigns us a coordinator to help us locate and employ therapists for Parker, is broken into regions. Usually, therapists only travel to specific regions and have very packed schedules, thus prompting our need to change therapists now that we are living in a new location.

This is always a stressful process for us. Luckily, it isn’t so bad for Parker, as he seems to be happy to be around anyone right now, and isn’t showing much preference to specific people. Being Parker’s advocate requires me to only accept therapists that are a good match for him—both in personality, how they handle him, how they interact with our family, and the tasks they push him to accomplish.

Twice since we have started therapy, we opted to change therapists—and for me, that is an especially difficult thing to do. I hate knowing that I hurt someone’s feelings or made them uncomfortable. But the bottom line is that I am here to make sure Parker gets what he needs and deserves. Thankfully, we have a coordinator that actually conveys the decisions to the therapists!

My hope is that with our new round of therapists, we can get a good, hardworking, and collaborative team together to help him progress. We have already seen our OT, and she seems great! We start DT next week, and are still waiting for Speech and PT. Here’s to hoping for a strong team right out of the gate!

Hiatus...Over!!

The blog hiatus is finally over! Our internet is FINALLY hooked up (and we can FINALLY watch the Breaking Bad episode we missed on Sunday).

Anyway……..have you ever had a time in your life where you felt like something is too good to be true? We are totally feeling that way with our new house.

As is typical for our little family, things seem to fall into place at the last second with only a few nerves to spare. Essentially, we viewed, offered, purchased, and moved into our home in less than a month. Whew! There are still many full, unopened boxes staring at me, just waiting to be unpacked!

Another trend for our family is jumbling and jamming (with a fair amount of fumbling) a lot of big life changes into a short period of time. Matt got a new job, Parker is in a new daycare because of that job, I started the school year, and our house dream has come to fruition after a few years of searching and a lot of hard work.

Our greatest amount of appreciation goes to our families, though. Without their support, encouragement, and excitement for us, we would definitely not be here.

So visitors….come on over!