Category Archives: PACS1

Reality Check

When Bridget first entered the integrated preschool, I never thought of friendships. I was worried that she could not keep up. After all, barely off her pediatric walker she had to be taken in her stroller from the classroom to recess. I was more worried about her getting knocked to the ground than I worried about her making friends.

Then she did. It happened naturally without any parental involvement or teacher encouragement.

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Oh my gosh they were so little

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The Turtle

I have to start this post with a bit of honesty. Those that know me understand that I am a suck it up buttercup type of person. While I do believe that you get what you give, that if you embrace this world and are kind the world will be kind in return. I do not believe in the other-world, spirits or destiny. I believe we make our own destiny by the actions we undertake. For example I believe that if I stay up all night playing Cribbage with my best brother-in-law I will have a headache the next morning. If I run an obstacle race with Lauren I will be bruised but my stomach will hurt from laughing.

I have, no word of a lie, been asked to leave a spirit shop when I brought Tia (who does believe) to a mystic (?). I was told by the woman that I was cold and not only blocking the spirits but killing their desire to interact. Apparently I was also spiritually blocking someone’s uterus. Anyway, I left (without police escort!) and have led a very happy life even if the spirits believe in me as much as I believe in them.

Then I met Beth from NJ.   Continue reading

Yellow was always my favorite color

Bridget has always attained her milestones at a different pace than her peers.  There are some milestones I never thought would happen. Some of them I was misinformed by others that she would not be able to do.  As Bridget continues to defy anyone dares to put limits on her, and this week she broke through one more “she would never”. Continue reading

Finding your way

When your child is diagnosed with cancer, mental illness, a Syndrome, ADHD, Autism, (put your child’s struggle here) or PACS1 a parents first thought is usually a variation of HOLY CRAP to what the heck do I do now?

The truth is, there is no road map to parenting a child who has more than typical needs.

  • Whether it is learning that your child is not suffering from normal teenage angst but a serious mental illness.
  • Whether it is learning that your child just isn’t making milestones but is seriously behind their peers
  • Whether it is learning the worst news a parent can receive, that their child may have a terminal diagnosis
  • Whether it is learning that your child has ADHD, something too many people think is a made up word for bad parenting
  • Whether it is learning that although you always fed your child healthy meals, that child is now bulimic or anorexic
  • Whether it is learning that your child committed a crime, even though they are a straight-A student
  • Whether it is learning that your child was killed in a drunk driving accident, even though they were sober in the car

When a parent learns any of the above (or worse), that is sometimes all they learn. They may be given a pamphlet of with website information. Their child may be placed on medication. Yet from this moment on, that parent is facing the battle to have their child survive without any clue of how to start. Continue reading

On the job training

Before you become a parent you do a lot of reading and researching.  You read What to Expect and (the more honest) Girlfriend’s Guide.  You sign up for every blog, baby website and scour the Internet for a small glimpse to your highly anticipated new life.

You give birth to a healthy baby and rejoice.  You ask Jenn before making any rash decisions. Then you quote her when you say, Well Jenn said it was okay to not the wash baby clothes before you put them in the dresser. You choose to breast feed or bottle, whatever is the healthiest choice for your family. Continue reading

This is the face

This is the face of a preexisting condition:

Boo 1m old in CHB

It’s a pretty face. I think it is the most gorgeous face in the world. I remember looking at this face and thinking how beautiful, simply beautiful my child was. What you do not see at first glance is this picture was taken at Children’s Hospital. This was Bridget’s third month of life and third hospital admission, after five ER visits.

This picture represents the face of a preexisting condition. Continue reading

It’s still complicated

To those in our Government that stood up against the repeal/replacement of the Affordable Care Act, I thank you. Even if it was for a reason I do not support. The work to save our system is far from over.

I’m not quite sure why you thought this would be easy, any of you that are for or against the Affordable Care Act.  Let me debunk a few myths: Continue reading

We can handle the truth

Dear Teacher and/or Educational Support Personnel,

You do a wonderful job of caring for our children. You nurture them. You hold a parent’s expectations in check. You challenge the child and keep the parents honest. Yet sometimes in your quest to be empathetic to our families, your kindness becomes a falsehood. Especially for parents whose child has a special need. You try to understand how difficult our life can be. You want us to focus on the positives, the milestones that are achieved and the goals that are finally captured.

You also lie like a rug. Continue reading

Simons VIP

On April 30, 2017 during our PACS1 Family gathering we were so thankful to have Dr. Wendy Chung join us for a mini-conference. Dr. Chung is a geneticist from Columbia University in NYC. She works with Simons VIP to provide families access to research opportunities, support and information.

Initially, Simons VIP focused on certain copy number variants associated with autism. They have expanded their research to include a wider variety of genetic events that cause neurodevelopmental disorders, (like PACS1).  The main goal of Simons VIP is to help provide treatment and care by identifying the genes that cause medical, cognitive and intellectual disabilities.
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This photo….

When I look at this photo, I remember Abby telling her kindergarten class that her new sister was in the hospital (again) but she was going to be home soon.

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When I look at this photo, I remember Abby telling her first grade class that there was nothing wrong with her sister. That Bridget just threw up a lot so if you want to be near her make sure you are not wearing nice clothing. White would be a good choice because then you can use bleach. Continue reading