Monday, August 15, 2011


So I follow Parents Magazine and their facebook posts. They posted a link to a recent article about the rates of autism in second children if the older child has an autism spectrum disorder. Then people are able to comment below. It's amazing to me the ignorance of people. Here are just a few of the comments.

1. I think Autism, ADD and all the other "disorders" are over diagnosed, yes I believe some kids suffer from them, but I believe that some kids just need a good kick in the ass...some discipline, manners ect. When I was in school there was not a single person with ADD or Autism, now my kids are in school, every other kid got some disorder...and there is a medicine for it...and diet does play a role, what people think is Autism and ADD could be a food allergy.

2. Completely agree with u Dewi! I think a lot, NOT ALL, diagnosis of ADD, autism, etc. is just a cop-out for parents that don't wanna be parents. Absolutely its much easier to parent a medicated child than to step up and parent a rambunxious one. 

3.When I think of the Autism I think of the guy that said vaccines caused it and parents believed him..and we know how that story ends.. 

and my favorite:
4.  Where was ADD 20 years ago?  

1, 2 and 4 were all written by the same person.

I felt my blood boil. It is hard enough to wrap your head around your child being on the Autism Spectrum, then you have to read things from people like this who think they know what they are talking about - but realistically speaking, they are clearly displaying their ignorance for all of facebook to read. I couldn't help myself, I had to respond.

Here is what I wrote:

Perhaps we should consider the amount of research that has been done in recent years about Autism Spectrum Disorders and ADHD. I think that because we know so much more about these disorders doctors are able to better diagnose children. We've been told there is most likely a genetic link in our girls. Autism runs on a spectrum, and to be diagnosed, children go through rather lengthy evaluations. My 5 year old has a PDD diagnosis, because she meets the criteria of an ASD. My 2 year old has also received the diagnosis - but both girls present in a very different manner. Neither is what the movies have made autism out to be. They are both sweet little girls who need extra help navigating the world around them. My older daughter also has an ADHD diagnosis as well as seizures and developmental coordination disorder. I participate in their therapies, work with the school system to provide them an excellent education and try every single day to help them. It's very disheartening to read the accusations of people who clearly don't parent these special children. It's also important to consider the legalities surrounding our school systems and mainstreaming. Perhaps there were no children in your class 20 years ago because they were isolated, and the kids with subtle symptoms were just labeled as trouble-makers or distracted or lazy.

What do you think, should I have just bitten my tongue and let them live in their blissful ignorance? I couldn't help myself, and now I will spend some time fretting if I was polite enough while stating the truth. I am no expert, but I would never pass judgement on the parents of a child with a diagnosis - not when we know the genetic nature of our girls. Are there bad parents out there - of course! I've seen neglect, and reinforcement of bad behaviors more time then not - but what about the rest of us who really try our best day in a day out? I know I'm preaching to the choir here - but I had to put it out there!

Sighing a big old sigh and shaking my head.

here is the link for the article:

and here is the link for the fb discussion:

Saturday, August 13, 2011


Last night I went to visit my dear friend at her baby's bedside in the hospital. Her beautiful six-month old baby has recently been diagnosed with Type I SMA (Spinal Muscular Atrophy). The little baby, we'll call her "E", is in the hospital because despite everything her parents and doctors have tried she is not gaining weight. It's too hard for her to suck and the effort seems to burn more calories then she takes in, so she has to get a G-Tube (feeding tube - through the stomach). Unfortunately she is too weak for the invasive procedure at the moment, so the doctor's have had put in an NG tube (through her nose) to see if she can tolerate these feedings and help to get her strength up.

Little E, is so very small, weighing in at just over 10 pounds at 6 months old. She cannot do anything for herself, but boy can she smile. Somehow E seems to sense that her parents and family and all those that love her are hurting and worried. Every time little E goes through a procedure, whether it's an IV or invasive tests, she keeps that beautiful smile on her face. Somehow this little angel baby is emitting strength and love through her smile. It's an amazing site to behold.

My friend and I were talking last night and she was updating me on the newest things they've learned of E's condition and prognosis. No parent ever wants to hear the things they are being told and warned about. I asked my friend if she'd broken down yet, and she said in bits and pieces. Then she made a comment that has stuck with me, she said: "I don't know where I'm getting this strength or where I'm finding it". I considered this. My initial response was: because you have to, because you love her.

I still believe that. In my mind strength is love. We all have our days of tears and pity, but we summon the strength to be there for our children because they are there for us and because we love them. Although the trials that Molly endures are not at the severity of baby E, I see this same sort of strength everyday. Molly seems to have intuitively realized how hard it is to see her helpless in the hospital or suffering from an illness and she rarely blinks an eye when it's time for a doctor visit or a procedure. In fact, even at her sickest, she fools caregivers because she's smiling despite how lousy she feels. She is the ultimate patient and displays unattainable strength. From her strength I gain the strength to help her through it all.

I also firmly believe that each of us has a purpose in our lives, although not everyone opens themselves up to accept their path. Finding strength when Molly first started having issues was very difficult. I was so distraught that my daughter would be different, that she would not be like other kids her age, that she may not get married or go to college, that we may lose her - I couldn't see past that. When I came to accept that those things might be true but realized there was so much more to learn from Molly - I felt my strength grow. And although my friend may not be in this place yet (it took me years) I've seen her strength evolve as she's come to realize and started to accept that baby E's path is going to be very different from what she expected.

None of us can predict the future, nor can we predict tomorrow. Some of us can live in blissful ignorance of the day to day challenges of caring for and loving a medically fragile and/or developmentally challenged child and some of us have to embrace those same things as a part of our world. While you may dream of your daughter going to an Ivy League College, my dreams are smaller. I dream of my daughter waking up happy tomorrow. Part of my strength comes in every tomorrow that I get with my beautiful girls.

I should note I also believe in the power of prayer. There are so many things that could get us down. So many people are hurting out there both physically and emotionally. I pray throughout the day for those people I  know, that they may have the strength to deal with those things they cannot control and to make the right choices for the things that they can. If you have a moment, please consider adding Baby E to your prayers. Thank you!

Friday, August 12, 2011

back to reality

Vacation is over. We arrived back home from my family's cottage on Sunday and it has been a week fraught with transition nightmares! Poor Kennedy is not happy that she has to share Mommy for the next few weeks, since Molly is no longer in summer school and first grade doesn't start until August 31st. Both girls loved being on vacation and having Mommy, Daddy, Goomie, Poppy, The Aunties, and our family friends at their beck and call. The girls seriously flourished in all the attention and we had an amazing vacation!

We did so many amazing things with the girls this year, things we couldn't really do when they were babies. Yes, Kennedy got stung by a Jellyfish and Molly wrench her hip so bad we had to have x-rays when we came back - but those were just minor setbacks to a truly wonderful vacation. It's amazing. We didn't do anything flashy this year. There were no day trips, no carousels, not even a dinner out - but it didn't matter, I would classify this vacation as one of our Top 10! Of course, Molly still asks daily for a return trip to Disney World - and they both love the outings - but we didn't need it. We are seriously trying to conserve our finances. We just keep getting hit with unexpected expenses from all around, mostly medical in nature, unfortunately. So we made the decision to keep this vacation low-key and just about being together as a family.

We swam, we fished, we boated, we built sand castles, we collected sea shells, we tried crabbing, Molly won about 25 games combined of Chutes and Ladders and Candyland (and she didn't cheat!). We cooked real, homemade meals which we sat together as a family and had big family dinners. The girls shared a room and did get to watch part of  a DVD each night before bed. They also had limited Ipad time, especially when the grown-ups were spent or a meal needed prepping. However, they played almost continuously. They "read" stories, they colored pictures, they truly basked in the attention of their loving family.

Waiting for Poppy and the boat

Taking a walk

Dance party!

Chilling on Mommy & Daddy's Bed

Princess Kennedy

Family Cottage

Sisterly Love

Fishing with Poppy

Family Picture at the Pirate Party
Trying our hand at crabbing

Like I said, it was a great vacation, and then we came home. Daddy went back to work on Monday. Goomie and Poppy stayed on the island. The Aunties and the rest of the extended family went back to their day to day lives. And I found myself at home on Monday morning with two sleep deprived little girls, who were not adjusting to the one person cheering section when they had 5 or more all week. I also had one little trooper who couldn't walk and needed to go to the doctors and then for x-rays... It's been an intense week.

We've had therapies almost every day, and excluding an amazing and unusual speech session, all have noticed how rigid Kennedy has become. She's pretty much refusing to walk, calling out "cheerio" which seems to translate to "carry me". Molly's been slightly better in the transition, but has been sobbing at the drop of a hat and even decided to wake up at 2:45am on Wednesday - leaving me baffled as to what's going on with these two!

With all this going on, I decided we needed a break. So, after nap yesterday I packed the 2 kids in the car with a back pack of necessities and headed to Clinton to see my folks. The girls were excited to go back to the cottage and go on the boat and to see their beloved Goomie and Poppy. They were fantastic for the whole ride and helpful when we stopped at the Pie/Corn stand for dinner accompaniments. They had a great time and we got back in the car at about 7:30pm to head home. We were less then a mile from our exit when I heard and felt the tell-tale bump-a-thump-a of a flat tire. The girls don't like traffic and they were both a little freaked out. I was too, but kept my calm, called roadside and settled in for the wait. Thank goodness for the DVD player and the DVDs I had left in the car. The girls had a few little moments of terror, impatience, sleepiness and worry - but overall they were good. Molly managed to lose her 2nd tooth, but handled it like a champ. She also managed to get her arm stuck in her carseat??? We got home about 10:15 and both girls went right to bed.

So here we are - Friday morning. Daddy left early to take the car to the dealership and walk to the train station to get to work. The girls and I are meeting friends and the fabulous Tammy at the playground for a therapy session and then back for nap time. The weather is incredible and I'm hoping that after a week fraught with transition nightmares - we are back into our new normal, at least until school starts and normal takes on a new look!