What is at risk with the Supreme Court’s healthcare ruling today?

I continue to be surprised and disappointed by the lack of knowledge about the Affordable Care Act and lack of support by the general public.  Polling shows that President Obama’s healthcare reform remains unpopular, despite pretty broad public support for the individual items contained in the Affordable Care Act, with the exception of the individual mandate.  You see, when you ask people if kids should be allowed to stay on their parent’s insurance until 26, or if people with pre-existing conditions should be able to get insurance coverage, or if there should be no lifetime dollar caps on what your insurance will pay for your care – most people are all in favor of these things.  What most people fail to understand is that you can’t have all those things without the individual mandate.  Those go hand in hand, at least if we want to have a free-market healthcare system.

I understand how people who have never been really sick, or never had a close family member with a major medical problem, might wonder how the Affordable Care Act helps them and therefore be against it.  I think that is a short-sighted view since almost everyone will get sick at some point, but I can sort of see where they could be coming from.  Almost everyone else who is against the Affordable Care Act falls into one of two camps:  1)  They are misinformed about what the reform does and/or does not do.  There are a lot of lies and misrepresentations about this issue out there.  If you are against the Affordable Care Act because you don’t know much about it or because you only watch Fox News or listen to Rush Limbaugh, please do me a favor and take 5 minutes to learn the facts (links to a few good sources below).   2)  They are against it because it came from the democrats and/or Barack Obama. I hope that this does not represent too many people, but I do believe some people are against it based purely on ideology – kind of ironic considering that the individual mandate idea originally came from a conservative think tank and was a central part of a Republican plan presented against the Clinton healthcare plan.

Today we will find out if the Supreme Court upholds all or part of the Affordable Care Act.  There is plenty of speculation about which way it will go – will they strike down or uphold all or part of it?  What will the ruling mean for healthcare reform and for the presidential election in the fall?  I will leave that talk to the journalists and political pundits.  I am interested in what this ruling will mean for me, for my children, for my family members.  I have a personal stake in this decision and so does every single one of us.  The Affordable Care Act is not perfect and it probably will not solve all the problems with our healthcare system, but it is a huge step in the right direction, in my opinion.  The Affordable Care Act will help me, my children, my family and friends, and you too.

Here are 10 things that the Affordable Care Act does that can help you or someone you love, and all of this is at risk today with the Supreme Court’s ruling.  Much of this information came from the Healthcare.gov site and from Ezra Klein’s Wonkblog at the Washington Post.

1.  Making healthcare more affordable to those that can’t afford it.  Ezra Klein describes that “Families making less than 133 percent of the poverty line — that’s about $29,000 for a family of four — will be covered through Medicaid. Between 133 percent and 400 percent of the poverty line —  $88,000 for a family of four – families will get tax credits on a sliding scale to help pay for private insurance.  For families making less than 400 percent of the poverty line, premiums are capped. So, between 150% and 200% of the poverty line, for instance, families won’t have to pay more than 6.3 percent of their income in premiums. Between 300 percent and 400 percent, they won’t have to pay more than 9.5 percent.”

2.  The individual mandate is not really much of a mandate at all.  Ezra Klein explains, “When the individual mandate is fully phased-in, those who can afford coverage — which is defined as insurance costing less than 8 percent of their annual income — but choose to forgo it will have to pay either $695 or 2.5 percent of the annual income, whichever is greater.”  So, there is an out for all those that don’t want the government telling them what to do with their healthcare or making them buy something they don’t want to buy.  You won’t get thrown in jail or have your house taken away if you don’t buy health insurance.  Pay the small penalty and guess what, you still get the benefit of being able to get health insurance when you really need it – because you are hit by a bus or have a baseball size tumor in your chest – thanks to the Affordable Care Act mandating coverage for people with preexisting conditions. You know what though, the individual mandate works because people generally want to buy health insurance if they can afford it and if it provides adequate coverage.  Based on the individual mandate in Massachusetts, about 95% of the residents are now covered thanks to the individual mandate.

3.  Insurance companies are not allowed to discriminate based on preexisting conditions. They ARE allowed to discriminate based on age (limited to 3 to 1 ratio), premium rating area, family composition, and tobacco use (limited to 1.5. to 1 ratio).  Before the Affordable Care Act, insurance companies could deny you coverage because your kid has a developmental delay or autism, because you were pregnant, because you had cancer 10 years ago, because you have high blood pressure, or because you have a history of back pain.  Insurance companies could also choose to cover you, but charge you insanely high rates because of anything they deemed a preexisting condition.  For example, A 22-year-old woman could be charged 150% the premium that a 22-year-old man paid, just because of gender.  Under the Affordable Care Act, insurers can’t charge women higher premiums than they charge men.

4.  More of your premium dollars will be used for your care.  Ezra Klein explains that “The law requires insurers to spend between 80 and 85 percent of every premium dollar on medical care (as opposed to administration, advertising, etc). If insurers exceed this threshold, they have to rebate the excess to their customers. This policy is already in effect, and insurers are expected to rebate $1.1 billion this year.”

5.  Insurance Plans will be required to cover preventive services without out-of-pocket costs.  This means you will not have a co-pay or any out-of-pocket expense for things like mammograms, well-baby and child visits, breastfeeding support and equipment, vaccinations, and colonoscopies.  To see a more complete list of preventive services that will be covered, go to the healthcare.gov site.

6.  Kids under 26 can stay on their parents’ insurance policy.  This makes very good since so many young people are still in college or technical school, graduate school, or trying to get established in a job or profession during their early 20’s.  This allows many more young, healthy people to be covered for a reasonable cost.

7.  Insurance companies can no longer put a lifetime cap on your medical expenses.  Before the Affordable Care Act, many plans put an individual dollar cap on lifetime insurance payments , often around one million dollars.  That may sound like a lot of money, but anyone who has ever really been sick can tell you otherwise.  Healthcare is expensive –  insanely expensive.  For example, if you get cancer and need a stem cell transplant in your 20’s, you could use $500,000 of your lifetime benefit – not leaving much room for another major medical problem.  If you have a baby born prematurely, you could easily rack up hundreds of thousands of dollars in medical costs, before that child even leaves the hospital.  The Affordable Care Act prevents lifetime caps on insurance benefits, meaning you will actually be able to use your insurance when you really need it, even if your needs exceed some arbitrary dollar amount.

8.  The Affordable Care Act helps people with Medicare by protecting current benefits and offering new ones that will reduce costs.  It also helps to close the “donut hole” (gap in pharmaceutical drug coverage) for seniors by cutting the cost of prescriptions in half, saving them money.

9.  Increased coverage for workers at small businesses and tax breaks for small businesses that provide health insurance to employees.  Ezra Klein describes that “small businesses that have fewer than 10 employees, average wages beneath $25,000, and that provide insurance for their workers will get a 50 percent tax credit on their contribution. The tax credit reaches up to small businesses with up to 50 employees and average wages of $50,000, though it gets smaller as the business get bigger and richer. The credit lasts for two years, though many think Congress will be pressured to extend it, which would raise the long-term cost of the legislation.”

10.  Healthcare reform without increasing the deficit?  There is widespread disagreement and conflicting reports all over the media on this, but Ezra Klein noted that “the law is expected to spend a bit over $1 trillion in the next 10 years. The law’s spending cuts — many of which fall on Medicare — and tax increases are expected to either save or raise a bit more than that, which is why the Congressional Budget Office estimates that it will slightly reduce the deficit. (There’s been some confusion on this point lately, but no, the CBO has not changed its mind about this.) As time goes on, the savings are projected to grow more quickly than the spending, and CBO expects that the law will cut the deficit by around a trillion dollars in its second decade.”

We’ll find out very soon what the Supreme Court decides on the fate of healthcare reform and the Affordable Care Act.  Even if you disagree, what do you think about all or part of these 10 features and benefits of the reform?  If you agree that our healthcare system needs reform, but are not in support of the Affordable Care Act, even after educating yourself about what it includes, how would you propose we reform the system?  As a family with several preexisting conditions – cancer, developmental delays, 3 pregnancies and c-sections – I need the Affordable Care Act to be upheld.  As a citizen, taxpayer, consumer, and part of the health care delivery system, I anxiously await this important decision and hope it is upheld.

A few links to read more:

http://www.washingtonpost.com/blogs/ezra-klein/wp/2012/06/24/11-facts-about-the-affordable-care-act/

http://www.healthcare.gov/news/factsheets/2011/08/women.html

http://www.washingtonpost.com/blogs/ezra-klein/wp/2012/06/26/the-irony-of-the-individual-mandate/

http://www.washingtonpost.com/blogs/ezra-klein/post/health-reform-with-a-mandate-the-massachusetts-story/2012/06/18/gJQAfohImV_blog.html


Happy Father’s Day Dad

Happy Father’s Day to all the wonderful dads out there, especially my dad!  I am so incredibly proud of my dad this year because of his remarkable physical transformation. He is a new man. I was worried about my dad for a long time. He has spent much of his adult life battling his weight and other health issues including high blood pressure, elevated cholesterol, and diabetes.  He never had the healthiest diet, and I only really remember him exercising when he had to for the military.  About 69% of adults in America are either overweight or obese, so he was not in the minority with his weight or poor lifestyle and health history.  My dad’s weight and medical concerns only increased since retiring from the Navy, until he was forced to make some serious changes or risk loss of his career or even his life.  My dad’s side of the family has a pretty bad track record with a number of deaths from heart attack or stroke, things that probably could have been prevented with lifestyle changes.  I think he probably knew that he would face a similar fate if he did not take control of his weight and health.

My dad also had a lot to lose if he did not make the necessary changes.  He is a husband and a father to four grown daughters.  Perhaps most importantly, he is Grandpa to my three kids and now to my sister’s newborn son.  With a 20+ year career in the military, my dad was gone a lot, too much with young kids at home.  He missed plenty of big and small events in our lives, and I still really don’t know how my mom managed so much on her own while my dad was deployed.  I also know, although he has never said this, that it must have been hard on my dad to miss all those precious moments with us.  I know that this is the fate of so many military families right now while our country is at war, and it breaks my heart because I know firsthand how hard it can be on the members of those families.  Since retiring from the military, I have seen so much more of my dad and been able to get to know him so much better as an adult.  All of my sisters are probably closer to my dad now as grown-ups than we ever were as children.

I have also been able to watch my dad become a Grandpa, perhaps one of my greatest joys over the past few years.  I know my father loves each one of his daughters, but I also know that my parents always wanted a boy.  They had a name picked out and everything.  My dad is naturally the strong and silent type, but having five women in the house (all fighting to get a word in) left him without much to say.  I don’t think he quite knew what to do with Barbies, dolls, make-up, boy trouble, and the hormonal teenage angst that was ever-present in our house for years.  Now there are three grandsons in our family, some sort of poetic justice in my opinion.  My boys, especially Jacob, adore their Grandpa.  Jacob loves all of his grandparents, but there is an amazing connection between Jacob and my dad.  He loves to take Grandpa on walks in the woods, play choo-choos or cars, and go to the park.  My dad enjoys following Jacob around wherever he leads, making him #1 in Jacob’s mind.  Jacob even resembles my side of the family, especially my dad.  Before my dad lost all of the weight, he had a hard time getting down on the ground to play with the kids and struggled to keep up with my active toddlers.  He could not physically be the Grandpa he wanted to be – active, engaged, and playful.  I am so appreciative of my parents and the role they play in my children’s lives.  Yeah, the babysitting is nice, but mostly I just love to see the way my kids get so excited to see them.  My dad needed to get healthy so he could be around a lot longer, especially for Isabella, Jacob, and Noah.

I always admired my dad’s work ethic, tenacity, and pride.  These are traits that I hope I have inherited and learned from him.  He relied on these character traits to totally transform his weight and his health.  My dad underwent gastric bypass surgery a year and a half ago and has lost over 100 pounds since that time.  Some people feel that this is “the easy way out” or somehow not as impressive as losing the weight without surgical assistance.  I understand where some of those people with that opinion are coming from because there are plenty of examples where surgical weight loss does not work as a long-term solution.  I do not feel that my dad will be one of those people.  He committed himself to long-term success.  He is doing it for the right reasons.  He did the mental work to prepare for the lifestyle changes and has followed through on those changes even after the weight loss.  My dad is a runner now – a real runner who belongs to a running group and does 10K and half-marathon races on weekends.  He does not take any medicine to treat health problems anymore.  He actually managed to get off all his blood pressure, cholesterol, and diabetes medicines before the surgery, as a result of the significant dietary changes leading up to the surgery.  He makes better choices about the foods he eats, liquids he drinks, and portion sizes.  He looks awesome and I know he feels great too.  He has a new lease on life and is making the most of it.  He has always worked hard for his family and for his job, but I am so proud to see my dad working so hard to take care of himself.  I admire my dad for many things, but I am inspired and moved by the complete transformation he has made over the past 18 months.

Congratulations on your remarkable accomplishments Dad!  Thank you for taking charge of your health so that you can be around for many more years.  Keep up the good work with your diet and running.  We are all so proud of you!  Lots of love to you on Father’s Day and every day!

My Plates are Crashing

Wow, it has been over a week since returning home from our anniversary vacation, and I am swamped!  I feel like I am literally trying to juggle 20 different spinning plates right now and any minute they are all going to come crashing down.  I probably should not even be typing this message right now because my real job (the one that pays me to work 3 days/week) has several pressing deadlines staring me in the face.  Oh well, I loaded up on caffeine in preparation for a late night and early morning.  I need to vent for 20 minutes on this blog and then I will be able to tackle those work projects.

Coming home from vacation was bittersweet.  We were actually ready to leave Florida because we were dying to see the kids.  They made us a “welcome home” sign and showered us with hugs and kisses upon our return.  Noah, my baby, was especially clingy and maybe just a little traumatized from our absence, but he is coping (and I am coping with my mommy guilt about leaving him).  While we were thrilled to be back with our  children, we were not ready to leave the relaxation and stress-free days of vacation.  I was doing pretty well sticking to a diet (I still need to lose 10 pounds or so that I have kept on since my 3 pregnancies and kids) and surviving on 6-7 hours of sleep a night.  However, my body got spoiled on vacation and got used to at least 2 delicious meals a day (in addition to dessert) and 9-10 hours of sleep.  Needless to say, my body and mind have been fighting to get readjusted to a more deprived state and are not happy about it.  Coming home also meant coming home to our insane schedule.  Here is a little taste of our last week since returning home:

Wednesday:  Back to work for me, kids at home with Les for part of day and Nanny part of the day.  Jacob had 1/2 day at school.  No school for Bella.

Thursday:  I worked ALL day – left at  7 AM and did not get home until after 10 PM.  This sucked even more since I usually don’t work on Thursdays.  I switched my days around since I had a few presentations I was responsible for on this day.  Jacob had his last day of school.  Les did the speech drive with Jacob and brought Isabella along for the drive.  Nanny stayed with Noah during speech.  Les (super dad) did dinner, bath, and bed routine.

Friday:  I was off, but Les had to work all day.  Packed tons of kid gear for a big day in Virginia Beach.  Took kids to VB for 11 AM speech.  After speech, we picked up my dad, got smoothies for lunch, and took Noah for his first haircut.  Dropped my dad off,  went to my in-laws house for naps for boys and to celebrate father-in-law’s retirement (Les met us in VB after work).  Late night for kids.

Saturday:  Needed household supplies – groceries, home depot stuff, craft supplies, and Father’s Day gifts.  Schlepped kids to multiple stores, went to Chick-Fil-A for lunch and playtime.  Les went to work at 2 PM, and I did afternoon and evening routine with kids on my own.

Sunday:  Big Day – Father’s Day!  Gave Les father’s day presents and we took a family trip to Super Wal-Mart for MORE groceries and supplies that we did not get Saturday.  Had all of husband’s family over and made Father’s Day brunch.  Cleaned up and helped Isabella and cousins organize a lemonade stand.  Prepared food for my family to come over for Father’s Day BBQ.  After the BBQ, Les and I left to go to a Dave Matthews concert (self-imposed craziness, I know, but totally worth it).  My parents did bath and bedtime with kids.

Monday:  Les worked.  I was off because I am working Thursday again this week.  Took Isabella to camp at Virginia Living Museum.  Took boys to museum and for a walk.  Had one of Isabella’s friends from camp over for a playdate and helped them with some craft projects while boys napped.  Packed up stuff for a late afternoon outing to Busch Gardens (we have season passes and love being able to go for just a few hours).  When Les got home from work, we went to the amusement park for 4 hours and put the kids to bed a little later than usual.  Les and I stayed up late pre-cleaning the house because we were having a cleaning person come the next day.

Tuesday:  Work day for me.  Les has to sleep during day because he starts working the overnight shift tonight = the beginning of a crazy few days ahead where we won’t see each other much.  My to-do list is a mile long – work to do for my job in preparation for my meeting, Jacob b-day invitations to mail, more grocery shopping, bills to pay, birthday gifts to buy, and another trip to get ready for over the 4th of July.

Wednesday:  Les sleeps and goes right to work when he wakes up because he has a meeting before his shift.  I will be gone all day and evening because I have a big work meeting.  The nanny will be with the kids all day and my parents will do dinner/bath/bed.  I will come home at 10 so my parents can go home.  I should be staying at the hotel where my meeting is, but I have no one to be home with the kids since Les is working overnight so my boss said I could stay the night at home as long as I am back bright and early.

Thursday:  Out the door as soon as nanny arrives and at my meeting all day.  Finally home Thursday evening, but Les still working two more nights so we won’t see him until Saturday.

Friday:  A nice long day spending time with my kids – finally!  Lots of stuff to do, but probably won’t do anything except play and snuggle my kiddos.

So….. this is my life.  I know it is not much different from anyone else’s crazy life, but it mine and most days it feels like I am just trying to survive.  I have many moments during weeks like this where I really question whether I am making the right choice to work outside the home, away from my kids.  These busy work weeks make the balance seem very off and make me feel like my priorities are not quite aligned.  I also don’t have any time for the things I really do enjoy, like blogging!  I have started 5 different posts – my Fifty Shades of Grey review, Cancer Recap, Father’s Day post, my take on the attachment parenting debate, and my synopsis of the Lance Armstrong investigation and the sham that it is.  This is the good stuff I really want to be working on, along with planning Jacob’s birthday, catching up on scrapbooks, organizing my office, finally getting my finances and bills in some sort of order, and just spending more quality and consistent time with my children.  I know it will settle down and the balance will shift back soon.  It usually does, at least long enough for me to decide to keep up this balancing act of working in and outside the home a little while longer.  I just need to get through this week.  I need to look forward to a great 4th of July vacation with family and friends.  I need to stop writing and get to my work so I can maybe get 5 hours of sleep tonight.  I need to take a few deep breaths and   move forward with the tasks at hand.

Hang in there with me as I get through this week.  I will finish those posts I mentioned soon and probably start several more that take me too long to finish.  I would like to promise that I will be a consistent blogger, but I am just trying to do the best that I can managing the other very important plates that are spinning out of control at the moment.  Once I get those under control, my fun side project of blogging can resume.

Goodbye Florida

  Goodbye Florida.  It has been fun, but it is time to go back home.  It turns out that 2-3 days is enough time for a vacation without the kids- at least for the first one.  We miss our little ones and our crazy life.  We feel rested, reconnected, refreshed, and ready to tackle a busy, fun-filled summer.  It was so nice to have this little time-out together.  We confirmed what we already knew on some level – we are still Les and Jess.  Sure, we are mom and dad to our three kids, but first and foremost we are individuals, and husband and wife.  We have taken time away individually over the past five years for work trips, vacations with “the guys”, or my recent trip to see my sister in Germany.  I know those trips were very therapeutic and re-energizing for each of us, but those trips also put the burden of parenting and running the house on the other partner.  We have tried to allow and encourage each other to take time away over the past five years.  Parenting can be hard work, and everyone deserves a little break to remember who they are as an individual.  It also reminds the person at home how much they value and rely on the other person.  Parenting is definitely easier and more fun together.  I admire single parents, because I know it can be very challenging and sometimes quite lonely to do that job alone.  Of course marriage and co-parenting has its share of challenges too, but I know Les and I appreciate each other and the role we each play in parenting.

I don’t think either of us doubted that we still had it as a couple, but it was just nice to confirm that we are still crazy about each other after 16 years together, 10 years of marriage, and three kids.  We still have plenty to talk about (other than the kids), we still love each other’s company, and we still have that spark.  This vacation not only made us excited for our next trip away together, but also made us more excited for our next family vacation.  There were so many times on this trip when some of the experiences we had felt a little bit empty without the kids.  We would comment how much the kids would love to see this or play with that.  For instance, “the kids would love all the shells on this beach” or “they would have so much fun playing in this pool.”  We are in a new phase of existence as a couple, one where we can’t necessarily separate the “us” of our marriage, from the “us” of our family.  We love this phase and are immensely grateful for the family we created.  We just have to remember that without the “us” of each other, we would never have the beautiful family that we do.  I guess we’ll just have to get the babysitters on reserve and pick a date in 2013 for our next trip together.  We wouldn’t want to forget what made it all possible, right?

Vacation Rocks!

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Les and I are on our first vacation as a couple in almost 5 years, celebrating a big milestone – our 10 year wedding anniversary. We are having an AWESOME time! The past few days have been pretty fabulous actually. Before leaving for vacation we enjoyed 2 date nights in a row with friends and a terrific visit with our best friends from northern Virginia. We took the kids to a fun birthday party on Saturday, complete with pony rides and a petting zoo.

We left Virginia on Saturday afternoon and flew into Tampa, FL. Les surprised me with a very thoughtful and romantic gift. He took me to the Tiffany store and presented me with a gorgeous pearl necklace, the only jewelry I have ever wanted other than my diamond ring. It was perfect because he had surprised me 10 years earlier, at our rehearsal dinner, with my first blue Tiffany box containing a simple silver open heart necklace. The pearl necklace was a wonderful surprise, but the whole Tiffany thing was icing on the cake. Major points to my amazing husband. We enjoyed a delicious dinner at Roy’s and spent the night in Tampa.

We slept in – no alarm, no work, no dishes or chores, and no children to wake us. I actually thought my body had forgotten how to sleep in, but no, it remembered. We ate at our favorite Florida breakfast place, First Watch, before heading down to Sarasota, FL for the remainder of our vacation. We checked in to the Ritz-Carlton and have just spent the past 3 hours lounging pool and beachside, sipping frozen drinks and just relaxing. I am in heaven. This is my idea of a perfect vacation.

I love our life at home with our kids. It is not that we lead this really burdensome, stressful life and never get time to relax or see each other. It is just that we are in the throes of young parenthood, balancing 3 adorable kids, jobs, activities, a house, and plenty of responsibilities. We are finally in a stage of parenting where even the baby sleeps through the night and we have a few hours at the end of the night to be by ourselves or with each other, but usually there are dishes to clean, laundry to do, bills to pay, or work to do. The day-to-day basic responsibilities end up occupying those few precious hours at the end of the day.

These opportunities to disconnect from our “normal” life are rare. Opportunities to reconnect as a couple, just the two of us are few and far between. After this great trip, we are committed to trying to do more disconnecting from daily stressors and more reconnecting with each other. Maybe we can even pull off a yearly trip for the two of us. We are thankful to supportive and incredible grandparents,and the best nanny in the world, to help us with the kids and make this vacation possible. We are so appreciative of the help and the love these people show to our kids in our absence.

Well, I am going to go order another daiquiri and go for a walk on the beach with my man.

Jacob – A Special Kid From the Beginning (Part 2)

Looking at these two pictures reminds me just how far Jacob has come.  I wish I could have seen this picture of him running with a football when he was 11 months old and I was a frightened that he would never sit properly, crawl, or even walk.  So many people encouraged me that it would come in time, and I believed them for the most part, but I still worried.  Jacob’s gross motor skills have improved exponentially over the past year and a half.  He walks and runs everywhere.  He still falls quite often when on uneven surfaces, but we have been lucky in escaping any real injuries or trips to the Emergency Room.  He is still in physical therapy through the school and privately, working on navigating surface changes, stairs (alternating feet up and going down safely), jumping, and overall core strength and flexibility.  From initial appearances, Jacob looks like a pretty typical 2 and a half-year old, which is such a tremendous blessing and a relief.  I feel like he will eventually be able to do everything his peers can do physically, even if it takes a lot more time and effort.

Our biggest challenge over the past year has been Jacob’s speech delay.  At the age of two, Jacob really was not talking at all.  He said mama, dada, and Bella and that is about it.  All of his therapists told us that children usually master gross motor skills before mastering fine motor skills, including speech.  Since his gross motor development was so delayed, this somewhat explained his speech delay.  He also needed to imitate sounds before he would be able to imitate words.  At two, Jacob was delayed in a lot of his fine motor skills and really was not imitating much at all.  He still was not clapping, not signing much (despite lots of effort on this), and not doing much fine motor play (block stacking, pop beads, etc.).  He would gesture, point, grunt, and cry if he wanted something.  Two-year olds can be challenging, moody, and difficult to understand anyway, but most two-year olds have a basic supply of words and/or signs to communicate their basic needs and wants.  Jacob did not have this, which was leading to a tremendous amount of frustration on his part and ours.

One of the great things about the Early Intervention program is that they are a direct link to the IEP and developmental preschool programs offered through public schools.  A child can stay in the Early Intervention program until they are three, but it seems like they encourage you to get them in school for a more stimulating, therapy-rich environment than the few hours of at-home therapy you get through early intervention.  Our daughter Isabella was in a Montessori school and we were very happy with the environment and the development we had seen there with her.  I am a big proponent of Montessori education, but I also feel like different kids need different things at various points.  This is a lesson, not just of education, but of parenting multiple children.  Montessori would not have been the right fit for Jacob, and I am not sure if it ever will be.  The developmental preschool through the public school system was a good fit for Jacob.  We went through the IEP process and he started the 2011-2012 school year with 2 days/week.  Jacob’s amazing, patient, smart, and caring preschool teacher helped advocate for him to go to school 3 days/week in the middle of the year.  Jacob enjoyed going to school.  He was fine getting on the school bus (so scary to send a 2-year-old on a bus, but he loved it).  He came home from the half-day exhausted, but happy.  The classroom is a language-rich environment, with therapy built-in to the entire program, in addition to more individualized speech, occupational, and physical therapy.  Because many of the other kids in the class were also delayed in one or multiple ways, we decided to also put him in a regular preschool class at the JCC for the other 2 days/week.  This way he would have some sort of school or activity every morning of the week (much easier for creating a routine), and he would be exposed to many different types of kids and learning environments.

We did see Jacob make progress at school, but the progress was not as fast as we would have liked.  By the time Jacob had his second IEP meeting at the end of 2011 (where we were requesting 3 days/week), we felt like his progress was stagnant.  This was a familiar feeling with Jacob’s development.  When he learned to crawl, it took him another 8 months to learn to walk, and it seemed to take forever.  With his speech, we kept expecting a “language explosion”, but he spoke less than 10 words from his second birthday to two and a half.  Progress just seemed so slow, which was so very frustrating and defeating at times.  In addition to increasing his days at school from 2 to 3 days and adding the 2 days at the JCC, we changed his private speech therapy as well.

We had been seeing a nice speech therapist at our home once a week from August 2011 to January 2012.  I had suspected that Jacob may have Apraxia, in addition to some dysarthria and hypotonia.  He fit the profile in a lot of ways and this speech therapist confirmed that he probably did have Apraxia.  She really focused on building his mouth strength through focused exercises in chewing, blowing, and whistles.  Just as Jacob had low tone in his body, his mouth was very weak as well.  These exercises were like PT for the mouth.  Jacob’s mouth did seem to get stronger, but this did not necessarily translate to improved speech.  Jacob also  did not always cooperate for these hour-long therapy sessions.  Overall, we just felt like we needed to try something else.  We had Jacob evaluated by a speech therapist in Virginia Beach (a 45-minute drive away) who was an Apraxia expert when he was 18 months old.  She said he was too young to diagnose with Apraxia at that point.  In January of 2012 I decided to attend an Apraxia support group meeting in Virginia Beach and I ran into this speech therapist again.  She suggested I bring him back in for another evaluation.  We did  the evaluation and have been schlepping Jacob to Virginia Beach twice a week for speech therapy and physical therapy since February of 2012.  Although this therapist does not think Jacob officially has Apraxia, she does agree that he has dysarthria and that the low tone affects his speech – it is just a lot more difficult for Jacob to talk than for other children.  She is good – what all speech therapists should be!  The drive is a pain, but worth it for good therapy that I finally feel is helping him.

I had suspicions that Jacob had some food allergies or sensitivities for a long time.  Even as a baby, with the severe reflux and eczema issues, I knew that dairy was a bit of an issue.  I tried to alter my diet while nursing him for 7 months, but I could never pin point what exactly bothered him.  When I stopped nursing, we tried him on regular formula, which he did not tolerate.  He seemed to do better on soy formula, and eventually soy milk.  We still gave him regular yogurt and cheese occasionally, which he LOVED, but it did not love him.  If I noticed the eczema flaring up, I would try to cut back the dairy, but sometimes he would still have skin issues or crying fits at night even when the dairy was cut out.  The other problem was that he seemed to crave dairy and would cry and throw tantrums at the fridge begging for yogurt or cheese.  I understand that my job as a parent is to set limits and control the nutrition, but it is hard to constantly fight over food, especially when you can’t figure out exactly what it is that is causing the problems.  He was also starting to refuse certain foods that he used to like – pizza, pasta, and some bread.  We took him to an allergist for skin testing at 18 months, but egg was the only thing he showed a slight allergy to.

Needless to say, I really started to suspect some food sensitivities or allergies that may not have shown up on the skin test (not the best test for certain sensitivities or allergies anyway).  I have always had an open mind to alternative sorts of treatment.  I already had Jacob on a special fish oil that is supposed to help with myelination in the brain and speech, not to mention being healthy for you as well.  Even though Les is a physician and I wholeheartedly believe in the benefit of Western medicine, I also don’t believe that the medical community (especially not any one particular doctor) knows all the answers.  We had been to pediatricians, neurologists, developmental pediatricians, allergists, dermatologists, ENT, and several other therapists and nobody really had a clear idea of exactly what was wrong, what was causing the problems, and what exactly we should do to help Jacob.

Although I do not currently think that Jacob is on the Autism spectrum, some of his issues share certain characteristics with Autism – speech delay, sensory integration/processing issues, and some of his GI problems.  I had heard about parents that had “cured” (or at least significantly helped) their children on the Autism spectrum with the Gluten-free, Caesin-free diet (GFCF diet).  I ordered six books on Autism and the GFCF diet and read them in one week.  Why not try this special diet, since it may help his stomach and skin problems that I suspected may have something to do with dairy and/or gluten?  There was plenty of information in the books and on the internet suggesting that speech and behavior improved on this diet as well.  The new speech therapist in Virginia Beach was supportive and said she had personally seen significant improvements in kids on this diet, in addition to being helped by the diet herself.  She also recommended more allergy testing by a different lab (Enterolab) to confirm food allergies or sensitivities.  We tested Jacob with this lab and, as suspected, the results showed that he was allergic to Gluten, soy, eggs, and dairy.  We eliminated the soy, since we had already eliminated everything else.  I cringe when I think about how much soy Jacob has consumed (soy formula, soy milk, soy cheese, soy yogurt, soy sauce, etc.) over the past 2 years.  After gluten, soy was the next highest score on his allergy tests.  I am trying hard to minimize the mommy guilt over missing this and possibly contributing to any of his problems with the soy.

We have really seen significant changes in Jacob since January.  We have seen the most dramatic improvements in his speech.  He probably has 50 words – maybe not easily understood by all – but 50 words and often tries to imitate other words and sounds.  Jacob is also playing more like a typical little boy.  I still remember the first time I saw Jacob playing with cars in a way you would expect a 2-year-old to play with them (about 6 months ago).  I was so excited and proud that it brought tears of joy to my eyes.  Now he regularly plays with cars, trains, and other toys the way I would expect him to.  This is something you take for granted with neurotypical children, but such a big deal for kids like Jacob. It is almost impossible to say if any one particular thing has resulted in these improvements.  I think the diet is probably the biggest thing that has led to the improvements.  He does not wake up crying during the night (confirming my suspicion that his stomach was hurting), and his mood is so much better.  He can still be a moody, grumpy and whiney toddler, but not nearly as unbearable as before.   In addition to the diet, Jacob is certainly benefiting from 5 days of school/week, more frequent speech therapy with an excellent therapist, and time.  He will be three years old next month.  What a difference a year makes!

There is still a great deal of work ahead of us.  Jacob will be starting a new year of preschool in an integrated class at the local public school in the fall.  We finished his IEP, and he will continue his speech, PT, and OT therapies while attending school 4 days/week.  We will continue to go to Virginia Beach for private speech therapy and physical therapy.  We have to work with Jacob every day on his speech.  I would love for him to be putting 2 or more words together regularly and expand his vocabulary.  I can’t wait to hear him sing songs and have a conversation with his brother and sister while playing.  He still has some strange skin rashes that appear on his legs.  We went to a dermatologist a year ago about this and did not get any answers.  We need to go to a different dermatologist and push for a better answer.  I continue to look for new things to cook and serve to Jacob to accommodate his food limitations.  This diet does involve a lot more grocery shopping and advance planning on my part, but it forces me to make fresher and healthier meals for the whole family.  In the next year I would love to see Jacob learn how to walk down stairs, pedal a tricycle, jump, and sit up in a chair for longer periods without slumping down.  We have lots of goals and look forward to celebrating all these accomplishments and more.  I am so thankful for the progress we have made and more hopeful than ever that my precious little boy is starting to shine through.

Jacob is a sweet, resilient, funny, and smart little boy.  He is such a special kid!  Of course, I still worry about him every day and probably always will.  I worry about all three of my kids, but my fear and concern for him is just different.  I just want what all parents want for their kids – good health, happiness, and the opportunity to be independent and live a full life.  Despite the stress and struggles along the way, I am so honored and proud to be Jacob’s mother.  I would do anything for him.  He has given us so much joy and taught us so much already in his first 3 years of life.  I can’t wait to see what he’ll learn next and look forward to the journey ahead!

Jacob – A Special Kid From the Beginning (Part 1)

Jacob is one extraordinary little boy.  He is my first born son, my middle child, and probably the sweetest AND the most challenging of all three of my kids.  Before I describe some of the details around my handsome little man Jake, I need to provide a little context.  Isabella, my oldest, was a tough baby for the first 3 months (she did not sleep much, not a great nurser, and colicky). Around 4 months Isabella became a much easier baby, and I became a much more sane and confident mom.  Other than our rough start together (more on that in a future post), Isabella was great.  She hit most of her milestones on time or early.  She was social, adorable, engaged, active, and it seemed like she was progressing and learning new things every day.  We felt like we had the hang of this parenting thing and thought we could do this again.

We decided to start trying for a second baby when Isabella was just 8-9 months old because of some of the fertility issues we had.  We did a failed round of IVF in the summer of 2008 before successfully trying IVF again in October.   I had a very good pregnancy and a much better delivery than my first one because it was a scheduled c-section.  I was thrilled to have my healthy baby boy, a big boy at 8 lbs, 4 oz.  He was a much easier baby than Isabella that first month – eating well, sleeping often, and easily soothed.  At about the one month mark he started having some reflux symptoms that were making him fairly unhappy – spitting up frequently, lots of spit bubbles, stomach/GI pain, and fussiness.  Our pediatrician confirmed that it was reflux and we started him on some reflux meds, I altered my diet to try to eliminate things that might be bothering him, and we let him sit and sleep on an incline as much as possible.  At around 3 months, I started to be get all “psycho mom” with worry and doubt about his development.  My mother’s intuition told me something was just not right with my baby.  He was not really smiling very much and just did not seem very engaged or interested in his surroundings.  Les and our pediatrician tried to reassure me over the next few months that he was fine and that it could be discomfort from the reflux, or he might just be a late developer.

There were a lot of little things that worried me in those first 6 months with Jacob.  All I had to compare his development to was his older sister who did everything much earlier than Jacob was doing things.  Many people said that boys develop differently and that I had to just be patient and not stress so much.  My husband is in the medical field, and I know enough about a little to be dangerous.  I was worried about Autism primarily, but there were other scary disorders I did not want to even fathom.  Even Les started to worry at 8 months when Jacob was not sitting, was not really playing/engaging with toys, and not getting around at all. Dr. Lewis, a pediatric neurologist at CHKD, diagnosed him with hypotonia, or “floppy baby syndrome”.  He reassured us that he would eventually sit, crawl, walk, and talk.  As for some of the other things I was worried about, like skin issues (eczema and rashes), speech delays, and some of the sensory and temperament concerns, we would just need to wait and see as he got older.  Jacob did finally sit up at close to 10 months, crawled at a year, and walked at 18 months.

I got him in early intervention services at 8 months for physical therapy, speech therapy, and occupational therapy.  The therapists were so helpful with all of Jacob’s issues – physical, sensory, speech, play, and feeding – and with all of my concerns and fears.  I try to tell anyone who has concerns about the development of their kids about early intervention services.  No doctors told us about these services that are available in every state.  I found this on my own, as so many concerned parents do when researching ways to help their child.  Jacob received services from his early intervention therapists, and from private physical therapists at CHKD, until he was two.  We will never know where Jacob’s development would be without the early intervention services, but that is sort of the point of these services – to not have to know what a potentially worse outcome would look like.  Jacob was certainly not a “typically” developing boy at 2 and he is still not at almost 3, but we are making progress (more on Jacob from age 2 to 3 in Part 2).

As a parent, you worry about all of your kids.  If you have a healthy, typically developing, smart, talented, and well-behaved kid (like Isabella and Noah) you worry about something going wrong in the future, you fear the unknown, and you worry about how smart or talented or well-behaved they are compared to their peers.  With a child with developmental delays, you have many of those worries, plus the real fear and concern about their present issues.  You wonder if the diagnosis is right, you wonder if you are missing something, are you doing enough, are you pushing too hard, are you giving them enough time and attention with therapy, will they ever catch up and lead a “normal” life.  I could go on and on about the list of worries I have had with Jacob.  Add to that, a heaping serving of guilt and self-doubt (is this my fault, something I did or did not do to cause this?), and you have some serious parenting stress.  I know this was true for me and it is true for so many other parents of kids with developmental delays and health concerns.

I am sure I will have many more posts about our journey with our wonderful and special son Jacob.  In spite of Jacob’s delays and all the fear and worries I have had about Jacob since his first few months, he is such a sweet, sensitive, adorable little boy.  When he does reach those milestones, like walking for the first time or saying a new word or playing with a toy in a “typical” way, they mean so much more because we know how hard fought the journey was to get there.  Many of these moments have brought tears to my eyes – tears of joy, relief, and immense parental pride.  I hope that sharing our journey with Jacob, might help those who are curious or who may be going through something similar.  Please share your experiences and your journey with me.  I have learned so much from others going through similar experiences and look forward to continuing to help each other in the future.