Saturday, April 30, 2011

eSpecially Parents: Michele's Story



My name is Michele. I live on Long Island in New York with my husband, Rich, 10 year old daughter, Taylor, and 2 year old son, Ethan. I have known Vanessa for nearly 30 years, since middle school. So I have some really good dirt on her. Like when she used to wear skin tight jeans with white “pumps” to school. Well…It was the 80’s! Oh, this is supposed to be about me…Sorry.

Anyway, when Vanessa asked me do write this I was honored. She is an inspiration to me, and she is one of the most courageous, most selfless persons I know. I also thought, “Why is she asking me? Ethan doesn’t really have special needs.” I guess even though I am constantly hounding my husband for being in denial, I have a little of my own at times.

When Taylor was a baby, I left a terrible and abusive marriage with her father. I went back to college to pursue a career as a Special Education Teacher. Little did I know how helpful my career as a Special Ed Teacher would become. I was a single mother, full-time student, full-time student teacher, and worked full-time in a flexible sales job. I said I would NEVER marry again or have anymore kids. Then I met my wonderful husband, Rich, my first year as a teacher at a Teacher’s Christmas party and it was all over!

When we found out we were having a boy, Rich had perma-grin for about four days because he was relieved the playing field would finally be even. He was living with two very headstrong females. Ethan was born and seemed to be a very happy, healthy baby. He even began sleeping through the night at 6 weeks old. Which I felt compelled to boast to everyone!


Little did I know we would be visiting Holland and not Italy.

Beginning at about 10 weeks old, Ethan would often cry uncontrollably, appeared to be in pain and distress and would frequently be inconsolable. The doctor said it was colic, formula allergies, and/or reflux. We switched formulas over and over, tried every acid reflux med and nothing worked. I knew something was not right but the doctors said that some babies just cry more than others.

At 4 months old, Ethan developed a rash all over his body and daily fevers. The doctors kept telling me it was just a “virus”. I knew something was wrong. I kept expressing my concern as to why some days Ethan would appear very swollen and his wrists and ankles would look like balloons but was told he was just a “chubby baby”. After seeing many pediatric specialists, a rheumatologist suspected Auto Inflammatory Disease (NOT Auto Immune) but had never seen a case of this extremely rare disease in her career so she sent us to National Institutes of Health (NIH) in Maryland in search of answers.

Ethan was diagnosed with a very rare Auto Inflammatory Disease known as Periodic Fever Syndrome caused by a genetic mutation. There are many different strains of PFS. All genetic testing has come back negative. Since Ethan’s symptoms are comprised of a few different strains of PFS, doctors suspect he may very well have his own, making it Ethan Disease. I remember Vanessa telling me at the very beginning of our journey with Ethan, not to be surprised if they never find a diagnosis. I thought she was crazy!

Now I know better and look to her for many of my concerns and strength. After trying many different medications, we found some hope where Ethan finally saw breaks from the pain, with a drug that is a study drug and not yet FDA approved.

Ethan suffers from daily fevers that can reach 105, rashes that can consume his whole body, and severe inflammation affecting the entire body, especially the joints, causing arthritis. He has some hearing loss in his right ear. During a “flare up” Ethan often is in pain all day and night, becomes immobile and loses milestones. He receives physical therapy twice a week for the arthritis, pain, developmental delays and significant delays during a flare up. Because this life threatening disease can cause developmental delays, mental retardation, neurological damage, blindness, hearing loss, major organ damage, and amlyodosis he just began a special education program with a nurse on staff.

My hard work to find a doctor that would help Ethan alleviate his constant pain finally paid off. Last month we visited a new Pediatric Rheumatologist in New York City. Knowing that Ethan’s medicine was helping somewhat, he doubled Ethan’s dose and we have seen a considerable improvement in every aspect of his life. I am cautiously optimistic because we have seen substantial improvements in the past that seemed to wear off.  Although, it breaks my heart giving him a painful injection everyday, 10 minutes of pain and torture is much better than him being in inconsolable pain for the majority of his days. Ethan is the sweetest, most loving and bravest little boy I know.

I firmly believe that it’s not the cards you are dealt, but how you play them.


Read more about the eSpecially Parents Series here.

Friday, April 29, 2011

eSpecially Parents: Elizabeth's Story

My name is Elizabeth and I teach preschool special education in Charlotte. I “fell” into the field 14 years ago while working on my Master’s degree and teaching at a church preschool. Several years ago, I had the opportunity to leave the classroom to support preschool teachers in inclusion settings. I loved the chance to meet other teachers and share ideas, but could not stand to be out of the classroom. The next year, I was back in the classroom – and this little red head kid stopped by to visit with his mom. I was HOOKED!

My husband, Brad, and I have 2 children – Ryan (13) and Kathryn (10). Ryan has Down syndrome and goes to middle school in a separate setting class. He likes trains, Disney movies and going to visit Grandmommy and Granddaddy at the Chicken Farm. Kathryn is in 5th grade and loves drama. She just finished her final performance with the school choir and anyone who knows her already has her autograph.
I love to read eSpecially Ben. Vanessa has a way of putting words to my thoughts and feelings and I am reminded that I am not the only parent who has these experiences. Thanks for allowing me to share!


Read more about the eSpecially Parents Series here

Thursday, April 28, 2011

Taken for Granted

I know my title probably has some of you ready to hear me rant and rave about how I need to be appreciated for all the work I do...well at least not today. (Ryan breathes a sigh of relief.)

This post is about reading - just plain old reading words, like you are doing now.

Logan has started reading over the past couple of months. I am overjoyed by it, so proud of him I want him to show everyone his new skill. I am writing about this because I do not hear people talk about their child learning to read. Am I missing something? Is my appreciation so much more because of Ben's situation? Do people just not talk about it because it is considered bragging? I wish someone would help me out here.


Learning to read was not on my radar as something to be excited about. Of course, everyone asks about rolling over, sitting up, first steps and first words. But never did anyone warn me that hearing my child read an entire book would make me burst with pride.

Logan reads signs when we are driving, words around the house, spells out answers and requests my presence by spelling my name. He's reading our bedtime stories. When I say lights out, he asks for a few minutes to read.

Logan can't understand the enormity of it all. He is proud of himself, but he does not understand what it means to be able to read. Right now, it is a practical skill for him helping him to see the world around him with a different view.

The days of spelling something sensitive or secret are over, but I can live with that. I am excited that he will be able to read books that will build his already well developed imagination and creativity.

So if your child is learning to read, celebrate! It is not something to take lightly. Let them know about the treasure chest they have opened. To me, accomplishing all the things that kids do, in such a short period of time, is truly amazing.

Tuesday, April 26, 2011

Gearing Up for Summer

With summer approaching, most families change their schedules to include vacations and downtime. It is a celebrated time, one that most parents reminisce about their own childhood summers filled with beaches, pools, late nights watching the stars, camping and roasting marshmallows. As parents we try to reinvent this for our own children because we enjoyed it all so much. But it can be tiring!

As I have said last year in Surviving Summer, this is probably the most difficult season for parents with children with special needs. Typically children with special needs thrive on a constant schedule filled with short bursts of activities that change at regular intervals - like a classroom setting or a well-run camp. Parents and families trying to imitate this is near impossible without their own housekeeper and camp counselor staff.

I had a taste of summer this past week. It was spring break for us and all three boys were home with me. We had late mornings and then an activity and doctor's appointment planned each day and then swim lessons at 5pm. I write this on the Thursday of that week and I am near exhaustion. I also have TV guilt, you know that guilt - the one where you are sure your family has single-handedly raised the national average for TV viewing hours per week.

So this year, I am armed with a plan for surviving this summer and I am hoping to motivate others to think about their own schedule:

1. Ben will get to camp later in the morning. No sense is rushing or waking up sleeping beauties.

2. Therapists will see Ben at camp later in the afternoon. We can have a summer free from therapists visiting our home. We do love them, but it is nice to have a short break.

3. I am arranging for our community workers to pick Ben up from camp 1-2 days a week so I can get dinner started and the other boys can chill. Hopefully this will eliminate some of the rushing around feeling I felt last summer.

4. Ben is not attending the first week of camp for two reasons. I noticed last year that the staff was still working out the kinks in the schedule and training counselors, so they were a bit disorganized. Now we will have a week to hang out at home, rest up from finishing school and then travel to see grandparents and cousins.

5. Have a pajama day once in awhile - even if it means skipping camp.

6. Try to keep to a regular bedtime routine at night. Sometimes during summer or holiday breaks, I let everything slide and we all feel it. If I am exhausted right now, so are the kids. Their routine is broken, swimming is kicking their little behinds and they need more sleep, not less.

So here's to a good summer. Plan it well and then take a breather every once in awhile.

Sunday, April 24, 2011

Magic Marker Monday: Personalized Onesies


Ryan's cousin, Shelley, lives near us and she is expecting her first baby boy in May. She also happens to be a clever and creative person and when it came to her baby shower, she took over planning the fun activities. I think the reason was she did not want us guessing her circumference and making her husband try baby food.

One of the activities for kids and adults was to decorate onesies. She provided white onesies in several different sizes and special craft paints and markers from Michael's. Everyone had a great time doing it. Now little Frankie will have his own personal line of fashion.

You may also check out some of Shelley's other creations at Olive O. Home.


Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

eSpecially Parents: Paula's Story

Well, let's see, my life in a nutshell...I always dreamed of having a family with lots and lots of kids.  I wanted about 4 since I'm one of four and that number seemed a  good number to grow up in. Well, unfortunately life did not turn out that way.

After being married for 5 years and trying to conceive for many of them, we found out we couldn't conceive without the help of science.  Thousands of dollars later and a few unsuccessful attempts, we got lucky and were pregnant with twins through in vitro fertilization.  One boy, one girl.  We were over the moon in happiness.  Seven months into the pregnancy I had premature labor contractions and found out I lost one of the babies.  It was a hard, sad time. I had to be on bed rest for the remainder of the pregnancy.  At eight months, my beautiful son, Tye decided he wanted to be born early.  He was just a little guy, 5 lbs, 8 oz. but otherwise perfect and healthy.

Tye was perfect in every way.  We were so happy, enjoying every moment with him.  I marked almost every day of what he was doing or what we did on one of those "First Year" calendars.  He was on target with all his developmental milestones until, at 15 months, we started noticing that he was not really speaking much, and not responding to his name. The pediatrician dismissed it as nothing.

On my 30th birthday we were getting ready for my party and a balloon popped by Tye and he had no reaction at all.  Our first thoughts were he was going deaf.  We had him checked out by an audiologist and everything came back normal.  We started speech therapy a few weeks before he turned 2.  At an appointment with a neurologist, we got the shock of our lifetime when he diagnosed Tye with autism.  Our world came crashing down.  All our hopes and dreams for a wonderful life were shattered.

We really didn't know much about autism except from the movie "Rain Man".  This was in 1998.  I don't even think we had a computer at the time. so I spent hours on the phone, making contacts and meeting people.  Some were helpful, some were not.  Some were in it just for the money they could make from a parent desperate to do anything to help their child.  The first year, we spent over $35,000 in therapies to try to help him.  The recommended hours of Applied Behavior Analysis therapy for a child with autism was 40 hours a week.  We could only afford 16.  I got some training to supplement the other hours.

I quit my job as a Physical Therapy Assistant so I could be home to care for Tye and take him to his other therapies - speech, occupational and physical.  My husband worked as much overtime as they allowed to pay for his therapy.  We had to take out a second mortgage to help pay for his therapy.  Everything revolved around Tye and what he needed to help him "recover" from autism.  It put a huge strain on our marriage.

When Tye was 4 years old, my family in NY told me about all the services that were available there. At the time, we lived in Florida.  I convinced my husband to let Tye and I move in with my parents to see if NY was the golden ticket to get our son what he needed.  After 3 years of my husband flying back and forth every couple of weeks, I convinced him to give up his job in law enforcement of 13 years, sell our house, move in with my parents and get a job somewhere in NY.

We tried to make it work in NY for another 4 years, but the strain of living under someone else's roof when you're married with a family, autism, the poor economy, and no jobs made us uproot again.  This time to NC, near Charlotte.  It was a rough start at first.  I didn't hear promising things about schools in NC for kids with autism. It was just kind of blind faith setting us out here with no jobs, but just enough money to be able to buy a house. It took my husband about 18 months to get a steady job with benefits.

It has been extremely challenging with lots of ups and downs.  Right now we have the right combination of good doctors who understand autism and will listen and not look at me like I'm crazy when I mention something.  Plus we have someone who lives nearby that helps us with Tye - this has been a Godsend.

Unfortunately, Tye is nowhere near recovered from his autism.  He turns 15 years old this May.  He is still nonverbal, although he does have some words that a familiar listener would understand. He needs to be watched at all times because he has issues running or wandering or just getting into something he shouldn't.  It is almost like having a typical 2 year old except this one is 5 foot 8 inches and 108 lbs.  He doesn't know how to occupy himself so those are times when he gets into trouble.  He developed seizures when he hit puberty at 13 years old. 

He is extremely handsome - I am biased because I am his Mom.  He smiles all the time and seems genuinely happy.  He loves to swim and taught himself how to swim when he was 3 years old.  He has a long way to go, but has come far in the little baby steps that he has achieved.

The road has been challenging.  We take things day by day, never knowing what to expect from sun up to sundown.  We keep things light to keep our sanity.  Some days we wonder how we will get through it and then other days are not quite as hard.  We try to savor the good moments and not dwell on the bad.  It's the only way to survive and not let the autism "beast" get to us.

Vanessa and I go back many years.  We are kind of related.  Her father and my aunt have been together for over 20 years.  When she asked me if I would be interested in participating in this series, I thought I would give it a try.  My life is crazy so I probably won't be able to make all the postings, but will try my best.  It might offer me a moment of solace and be a good place to let things out.


Read more about the eSpecially Parents Series here

Saturday, April 23, 2011

eSpecially Parents: Natalie's Story


Hi, my name is Natalie Weaver. Before I became a mom I worked as a sales and marketing manager. In my free time I enjoyed painting. I used to display my artwork for years at a gallery in a local arts district. At some point I would like to paint again.

At a very young age I knew that I wanted to be a mom and somehow knew it would be the most important role in my life. Taking care of my family is what I'm truly passionate about. I feel lucky to be able to spend my days at home with my children, Sophia is 2 1/2 and Alex is 9 months old. I couldn't do this without my loving and supportive husband Mark. He is an amazing person. His strength and wonderful sense of humor has helped us get through the most heartbreaking times with our daughter.

Sophia was born with a rare craniofacial condition. So rare that none of her many specialists have seen anyone else like her. She has differences to her face, hands and feet. She is undiagnosed and one of a kind. Sophia's had 6 surgeries and faces dozens more in the hopes of improving basic functions like eating, walking and talking, just to
name a few. She has physical, occupational and speech therapy every week to build her strength. In between surgeries and hard work, Sophia is the happiest little girl and loves to laugh. Her strength and beauty amaze me.

I am so excited that Vanessa invited me to be apart of eSpecially Parents. A mutual friend introduced me to her blog 2 years ago. I remember the first time I read it. At that time, I felt very isolated. I didn't know anyone else who had a child with special needs. Some of the things Vanessa wrote in her blog were the same as the thoughts in my
head. For the first time I felt connected to a mother who understood what I was going through. Even though we have never met, she's had a tremendous impact on me and helped me realize that I am not alone. Vanessa's honesty and willingness to share her feelings is an inspiration to me.

I was nervous about participating and sharing my feelings but I wanted to push myself outside of my comfort zone. I think it will be good for me. I want to connect with other families that understand. I'd like to build a loving and understanding community around us. Also, It is so important for me to tell others about my Sweet Sophia and to share our journey. Our life is filled with many challenges but somehow we manage to live in the
moment and remain happy.

To follow Sophia's journey visit Sophia Weaver.

>Read more about the eSpecially Parents Series here

Friday, April 22, 2011

eSpecially Parents: Karen's Story


My name is Karen. Vanessa and I were freshman college roommates.  Although we do not see each other as often as we would like, we are able to catch up with phone calls.  It was in fact when Vanessa called to tell me that she was pregnant with Ben, that I shared with her that I was also pregnant with my first child.   We discovered our due dates were about one month apart; oddly enough this occurred two more times.  

I am a married stay at home mom of Matthew (5) and Jacob(7).  I also had a third baby (Michael) that died at 8 days old after emergency heart surgery complications.  I include Michael in all of this because I think the loss of him, has influenced our decision making process.

Jacob and Matthew have a brain disorder called Lissencephaly Pachygyria (Smooth Brain).  Basically instead of having all the lumps and bumps that the brain normally has their brains are relatively smooth.  We have had all types of genetic tests done, but they have been unable to diagnosis what has caused this disorder.  When I looked this diagnosis up on the internet 4 years ago, the indications were that if your child had this disorder the child would be comatose, vegetative, die before the age of 3.  My children are extremely active and although the diagnosis does describe their brain it does not describe what is going on with them.  Jacob is more severe than Matthew.  Jacob has autistic tendencies, while Matthew is more ADHD.  They do everything much slower than other children.  

I am doing this to share the story of my children in the hopes that it will offer other people hope and courage as they face a scary diagnosis of their own.  I also hope to share that although there are hardships to raising special needs children, there are also many benefits!


Read more about the eSpecially Parents Series here.

Thursday, April 21, 2011

You Should See the Other Guy

On Palm Sunday, we arrived at church at our usual time to participate in Sunday School. I took Ben's walker out from the trunk. Ryan and I strapped Ben in with chest harness and seat. Ben made his way toward the door as his brothers ran around the garden amused by the bird bath with the stone bunny inside.

I opened the door to the church for Ben. Without warning, Ben's walker folded onto itself, slamming Ben's face to the floor. Ben's nose took the brunt of the fall. He bled and cried. Then I cried. Our church community got ice, gave hugs and helped any way they could. Ben only wanted his Dad to hold him.

Of course, things like this happen so quickly and when they do, the details are all in a haze. I do remember wondering, what just happened? How could the walker do that? And probably even quicker than the fall, the answer came to me: I did not engage the lock for the walker properly.

Some people have told me not to feel bad or guilty, but I did. Ben's nose blew up to at least twice its size. He was dazed and upset for a long while, enough that Ryan took him home instead of staying at church. Four days later, Ben had two black eyes, an almost improvement from the dark pink "eye shadow" he sported two days before that.

This blog is about full disclosure - paying wisdom forward is in our masthead, after all - that is why I share this story, because Lord knows I wanted to sweep it under the rug. There are three things I learned:

1. Even though I was not in a rush to get the walker setup, I still overlooked an important part of setup. Double check and then check again.

2. Feeling guilty is okay...for awhile. Denying your feelings is counter productive. Moving on is part of healing. I made a mistake as all parents do. I forgave myself. And Ben has been snuggling up to me so I think he did too.

3. Humor is a good healer. At the doctor's office on Monday, Ben's bridge of the nose was wider than the tip, resembling an Avatar. Perhaps the doctor did not appreciate our humor, but it had us all laughing, releasing the tension. And knowing Ben's nose was not broken and would heal just fine was a relief.


And really, "You should see the other guy" is still a good line.

Tuesday, April 19, 2011

An Uncelebrated Anniversary

I knew the call was coming, but did not expect it to be an anniversary moment. On the drive to Charleston with my mom and sister for what is known as our Annual Girls’ Weekend, this being our second, I got a call from Ben’s neurologist. Last year, while on the 1st Girls’ Weekend (cannot say annual when it is the first, a little pet-peeve of mine from my event planning days) I was first informed of Ben’s seizures. So this call was ill-timed, yet should have been expected, because life is like this – when you are trying to get away from it all, it catches up with you and lays it all in your lap. But I was much more experienced this time. I took the information in stride and made the follow-up appointment for Ben for the next week. With an action plan set up, I was able to file it away for the long weekend.

Lucky for us, the neurologist was able to see us immediately because her trip to Japan was canceled due to the earthquake and tsunami – once again one of life’s ironic moments. It also meant that because her schedule was wide open, she had ample time to go over Ben’s extensive seizure activity in pain staking detail. She spent at least one hour going over each reading and explaining how the seizure moved across his brain to different areas.

It is all a blur, but I remember the high or low points, depending on your attitude and state of mind. Ben could have a “real” seizure – one with the convulsions, the ones that scare the hell out of me and most people. Because he does have a thin corpus callosum, it allows the seizure to go to both sides of the brain which can “help” one of these stronger seizures take hold, just a small benefit of having some of your corpus callosum. She also said that these seizures affect Ben’s language and learning. While having one, he cannot learn, and from the looks of the charts, Ben is having seizures VERY often. In fact, while sitting with the doctor during the appointment, she observed Ben having a number of seizures.

We left with a plan: increase Ben’s current medications slowly, keep charting his seizures, come back in early May and try a new medication if the current one does not significantly decrease seizure activity.

I usually hold myself together during an important doctor’s meeting for Ben. See me an hour later, and I look and feel like a little bit of life has been sucked from me. I am drained emotionally, physically and mentally. And after countless appointments, you would think I would remember this exhaustion, but I don’t. It hits me, I go down and then later, I realize what happened. After some rest, I am back to normal. Perhaps I should build this into my calendar as a reminder of the appointment aftermath. A small "AA" notation to remind me I will need some down-time to process the experience and then come up with my own 12 step coping plan.

And step one, I’ve got Ryan lined up for the May appointment.

Monday, April 18, 2011

Magic Marker Monday: Hands Down to the Bunny!

By painting the pointer and pinky fingers and palm of the hand, this bunny comes alive. Add googly eyes and a nose made from pipe cleaners and felt and you have a cute card to give out to grandparents and friends.

Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

Sunday, April 17, 2011

eSpecially Parents: Donna's Story

Hello everyone.  I'm new at this blogging thing so bare with me. My name is Donna and my son's name is Ben.  I met Vanessa and her sweet Momma when our Ben's were classmates years ago.  Vanessa was the only parent (other than me) who would stay in the classroom to check things out. I would try to just drop him off and leave, but ended up going back inside.  Maybe it was because Ben stayed sooo sick and I worried about him catching something else.

Ben is an only child and was born with Tetralogy of Fallot (a defective heart).  He had 3 chambers instead of 4. I found out about his heart at 4 months pregnant.  During my last doctor's  visit, something went terribly wrong and I had an emergency c-section that night.  Ben was born with underdeveloped lungs and had to stay in the NICU for 2 months.  (Somewhere along 7 months I lost fluid and it went undetected).

At 3 months old I took him back to the hospital for his heart surgery.  It was a success, but while in the recovery room on the second night, the nurse turned him over and his ventilator came out.  I came home with a different child.  You might say how could I tell at 3 months?  Oh, I could tell immediately.  Moms, you know when your baby isn't breathing, eating, or sleeping the same.

So what did I do after giving myself permission to loose my mind for "one minute"?  I looked at Ben and said "okay, here we go baby", and I became the mother who made sure everyone who came in contact with Ben was on the same page.

Ben had a lot going on.  My motto was "prevention mode" because once he became sick I was the one taking care of him for at least 2 weeks.  I told everyone involved with him that they needed to learn how to stay in prevention mode with my little man.

Moving forward, Ben is now 7, immobile, cognitively delayed, and has a g-tube. I'm happily divorced after 3 years of marriage.  I divorced almost a year after Ben was born.  Surprise, surprise.  My occupation is Benjamin 24/7.

Life has been pretty difficult for me but I just make sure that I keep living.  I love to play and laugh a lot even when it's not funny.  I set weekly goals for myself to make sure I keep this thing called life fun for me.  At 42 years old I decided to get a tattoo.  What the.....?  Ooouch!  I'm such a punk, I didn't let the guy finish it.  Now I'm ready to get it finished.  Not by him, though.  I want a motorcycle.  We'll see. Kayaking is my next venture along with white water rafting.  My intention was to go skydiving before having a baby, but that didn't happen, so I've scratched that off my list.

My mom and dad are my lifeline.  Without them I couldn't do this without losing my mind.  My mom has a magnet on her refrigerator that says "Dance like nobody is watching" and that's exactly what I do in my kitchen.  Ben sees me though.  He smiles his great big smile, reaches his arms out, and we dance to whatever is on the radio or TV, be it rock, gospel, soul, or nursery rhyme.

Love life y'all!


Saturday, April 16, 2011

eSpecially Parents: Meg's Story

Hi!  My name is Meg.  I'm an American expat living in England with my husband and four year old twin son and daughter.  I have lived in the UK for the past 8 years and have only worked as an office temp in that time (long story), but before I moved to England I worked in Residence Life/Student Affairs.  My last post was Assistant Dean of Students and Director of Residence Life at a private American University in Switzerland.  Now I work 24/7 as a mom/wife/cook/cleaner/playdate co-ordinator/party planner, etc.

When my children turned two, our doctor's office sent us a list of milestones/skills/behaviours that my kids should have accomplished by that age. I read through the list: putting two to three word sentences together, potty trained or showing an interest in potty training, make believe play, etc. and I started to cry.  My husband looked over my shoulder and, attempting to comfort me, said 'Pixie* is doing all of those things'.  I managed a tearful reply 'But Bubbie* isn't doing ANY of them'.  At that point we started having my son evaluated but couldn't get anywhere...the professionals wanted to give him another 6 months to see if things improved.

After 6 months there were absolutely no changes in any of his behaviours, so we were referred to have a number of tests done.  My son refused to co-operate with the hearing test, and we had a fruitless meeting with the speech therapist.  The pediatrician took a thorough history and seemed quite interested to note that my nephew (my husband's brother's son) was diagnosed with Asperger's Syndrome. This got me thinking and I went home and researched everything I could find out online about Autism, Asperger's and ASD (Autistic Spectrum Disorder), but I didn't think it fit my son - some things were certainly spot on, but other things didn't describe him at all.  I put it to the back of my head.

I then proceeded to take my kids to a music and dance class that I thought they would both like.  The first class was difficult, as my daughter was very interested in the class and wanted to participate, but it was set up so that parents and children work together and I spend most of the class running after my son, returning toys, food, etc that he had taken from other people's bags.  Even though it was far from a success, I soldiered on because my daughter really loved learning all the dances.  The second class was even worse, and my son ended up underneath a chair screaming and kicking me.  I didn't know what to do.  My daughter was in tears, I was in tears and I couldn't leave because I couldn't get him out from under the chair.  It was horrible. 

A day or so later I had a follow-up appointment with our pediatrician.  She mentioned a charity that ran a playgroup in town for children with developmental delays of all kinds.  She said they hosted a Stay & Play session once a week and she recommended I go with both kids.  I brushed her off saying, that I could not go at that time as I had signed the kids up for the music and dance classes.  When she asked me how the class was going, I broke down and finally realized that I could not go back to that class again and I needed to try the Stay & Play session.  I thought my son wouldn't fit in, and we would never have to go again, but I was wrong.

I saw so many kids suffering with similar issues at the play group - out of control tantrums, speech delay, little eye contact and no imaginative play.  I got to talking to some of the other Moms.  I was repeatedly asked if my son had been diagnosed with ASD or dyspraxia.  I could no longer deny it, my son was most likely autistic and I needed to find out how to best help him. 

We continued attending the Stay & Play sessions and eventually my son was offered a place in the pre-school the charity ran.  He stayed there and made some progress until we moved to another part of the country and were forced to start all over.  Thankfully we found a lovely, small pre-school where both kids could go, and they were willing to assist my son in any way he needed. 

After about 6 months in our new home, my son was offered a multiple agency assessment which took place over two days.  At the end of it, they informed my husband and I that they were diagnosing my son with Autistic Spectrum Disorder.  Even though I was not surprised, I was upset.  I was glad to have the diagnosis so we could begin helping him, opening doors to treatment, and actually having a name for his challenges, but a grieving process followed nonetheless.

It's been 5 months since his diagnosis and still we struggle with how to help him, how to understand him, how to calm and reassure him.  I have read countless books and always feel so positive and prepared until I'm stuck in the middle of an escalating tantrum, still not knowing how best to deal with it.  There was no magic pill or book or advice given to us to make it all better.  Some days are phenomenally great, some are good, and some are really really hard.  When my son is having a good day, he is the sweetest, kindest, most wonderful child in the world.  And because we have waited so long to hear his voice and understand him, every single new word, phrase or song is precious and cause for celebration.  We are hoping with time and more knowledge, we will be better able to cope and move on from survival mode to a sense of normalcy.

Well, that was very wordy, wasn't it?  I apologize, but I think I needed to write that.

So how do I know Ben, you ask?  Actually I don't know Ben, but I worked with his Mom quite a few years ago.  Thanks to the wonders of Facebook, I have been able to keep in touch with Vanessa and to learn about the struggles and joys she and her husband have faced in helping Ben.  Quite frankly, she is an inspiration to me.  I was very honored to be included in this series and I hope that my words might help someone else out there who might be feeling alone or lost in the craziness either pre or post diagnosis.
*These are my children's nicknames, not real names. :)

Meg also blogs at An American in Jane Austen's England.

Read more about the eSpecially Parents Series here

Friday, April 15, 2011

eSpecially Parents: Denise's Story


My name is Denise and I live in Texas with my husband, Matt, and our three children: Jason (5 years old), Luke (almost 3 years old), and Madelyn (5 months old). Matt is Vanessa’s cousin from New York. I have been following Ben’s blog every day for about a year now. Having a special needs child of my own, this blog gives me inspiration. I enjoy cheering Ben and his family on during the rough patches and hearing about his latest accomplishments. This is why I am happy to tell the story of my son Luke and his life with CHARGE syndrome.

Luke was born six weeks early after a normal pregnancy which was not unusual since my first son was also preterm. He had to spend some time in the NICU, but appeared to be otherwise healthy and beautiful. During his stay in the hospital, several things were pointed out to us that led us to believe that something was wrong. First it was his ears: low set and smaller in appearance. I didn’t think that was anything to worry about at first. Some people have small ears other have large ears. Then it was the failed hearing screen. I thought that had to be an error; probably due to fluid in the ears. After all, there is no hearing loss in the family. Then it was the holes in his heart that were found after a murmur was detected. Luke wound up staying in the NICU for 3 weeks. I just wanted to take him home and pretend he was a normal healthy baby. That idea did not last very long.

Once we got home from the hospital, more issues appeared and our suspicions about Luke’s hearing were confirmed. We noticed that the right side of his face didn’t move as well as his left side. An MRI and CT scan showed an abnormal facial nerve as well as missing vestibular system (balance). Tests also revealed that Luke had severe to profound bilateral hearing loss and he was quickly fitted with hearing aids. Luke also was also missing several developmental milestones and he was started in physical, occupational, speech, and deaf education services. Several months later we found out Luke also had a dysfunctional swallow. We soon began vital stimulation to help retrain his muscles to properly swallow. He was placed on a diet of puree food and honey thick liquids. Needless to say, it was a rough first year and we had no idea why this was all happening.

Luke’s second year of life was just as difficult as the first. Although it seems like we were finally able to go to the doctor without some new health problem being discovered we knew we had to manage the ones he already had. During this time, Luke had surgery to repair the hole in his heart. He also had a cochlear implant placed for since hearing aids did little if anything at all to improve his hearing. A short time later, Luke underwent a facial nerve graft for his facial paralysis. Our hope is that he will continue to regain movement on the affected side and be able to smile spontaneously.

In researching Luke’s condition, I ran across a syndrome called CHARGE syndrome. CHARGE stands for Coloboma of the eye (which can cause vision issues), Heart defects, Atresia of the choanae (blocked nasal passages), Retardation of development, Growth difficulties and Ear abnormalities. There are also a number of other birth defects that fall under the CHARGE spectrum. A genetic test for CHARGE is available, but since it only picks up 2/3 or less of the children with this syndrome, a diagnosis is made primarily on clinical findings. Luke has 3 of the main components of the syndrome (Heart, Retardation of development, and Ear issues). Luke seemed not to totally fit the profile however a CT scan of his ears showed abnormalities consistent with CHARGE.

After many months of research and seeing several doctors and 2 geneticists, Luke was finally diagnosed with CHARGE syndrome. For us it has been a relief to get a diagnosis and meet other children who have been affected by CHARGE. No two cases are exactly the same and some are more affected than others. We are members of the North Texas Charge Association which has been a good support system and source of valuable information for us.

Today Luke is a happy, reasonably healthy little boy who loves the park and hanging out with his family. He just learned how to walk and loves to practice his new skill. He is able to hear with his cochlear implant and can say a few words (although he doesn’t use them as much as I would like). His favorite word is “No” and he will even point his finger when saying it. Pretty cute , huh! He also had a facial nerve graft last year and is getting some movement of the right side of his face. We still have some minor health issues and multiple therapies to go through but I always look forward to seeing his progress.

Read more about the eSpecially Parents Series here

Thursday, April 14, 2011

eSpecially Parents

Parents of special needs children often get lumped together for a variety of reasons. On the surface we seemingly have the same needs, concerns and experiences. In many ways, we do face similar issues and experiences; however, the way in which we handle the emotional, mental and physical demands may be different. A challenging situation for one parent may not be for someone else, and a support system for one family may be a strain on another.

I was reminded of this when I met a friend for breakfast a few weeks ago. Her son has the same ACC diagnosis as Ben. We do have a lot in common and an instant friendship was formed when a camp director introduced us because of our ACC connection (what a pun!) That morning, she shared how every night since her son was born (he is 14 years old), she checks on him 5-6 times a night to make sure he is okay. It is the only time she feels he is safe.

Then she asked me, "Don't you do that too?" After a brief pause, I shamefully, said, "No. After I am asleep, that's it. I don't worry while Ben is asleep, and I value my sleep too much to wake up that often." I felt a bit selfish. I think she was surprised that I did not have the same routine.

Two moms with kids with the same diagnosis - different worries, different ways to cope. Neither is better than the other - just different. We are all affected by our child with special needs - the joys, the worries, the frustration, the anger and the denial. The way in which we deal with all of it is based on the skills and characteristics we possess and our own life experiences.

Over the past few weeks, I contacted nine mothers of children with special needs. My relationship with each of them is varied, from best friend from high school to mother of Ben's former classmate. I asked them if they would be willing to answer one question a month about their experiences raising a child with special needs.

This new series, eSpecially Parents, will highlight how these nine parents are coping in their situations. You may not identify with every mom, but you may be able to understand similar struggles and learn from their experiences.

Once a month, they will each answer one question in their own unique way using stories, photos and personal experiences. This series will begin tomorrow and will be interspersed with the regular eSpecially Ben posts. After posted on this main page, it will be added to the Be Inspired Section on the top menu for easy following.

Wednesday, April 13, 2011

Special Exposure Wednesday: Going Down

Ben is usually reluctant to go up and down stairs. Here, Ben's PT works on building these skills. If Ben was more cooperative, it is possible he could ride the bus without the wheelchair.

Tuesday, April 12, 2011

Welcome to Holland

Many of you know this poem and some may even say it saved your life at the time someone gave it to you to read. Others who do not know it, get ready to read something that will open your mind to a new way of thinking.

WELCOME TO HOLLAND


c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



I am reposting Welcome to Holland because another blogger scored an interview with its author, Emily Perl Kingsley. Reading this takes away the mysticism behind the poem, but in its place is a real-life remarkable woman, courageous son and inspiring story. Thank you Ellen at Love That Max for sharing this with us:

Interview with Author of Welcome to Holland.

Monday, April 11, 2011

Magic Marker Monday: Multimedia Art

Ben is getting a twin size bed soon and with this improvement, 
his room will get an upgrade featuring these works framed.





Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

Thursday, April 7, 2011

Junior's Story

Another benefit of the About.com race was that I met other bloggers whose children face similar issues to Ben. One that really impressed me was a story about Junior. His photos alone make you want to meet him. Junior looks like a really cool kid with a great attitude. And it is obvious that his mom does a lot to make his world as wide as it can be. Check these out when you get a moment:



Tuesday, April 5, 2011

Tying Up Loose Ends

Last summer when we used the Landeez Chair with Ben at the beach, we needed to purchase a small belt to keep him in place. We bought it at a small hardware store for $3 - fastener and all.

A few weeks ago when I took Ben for a haircut, I remembered the belt was still in the trunk. If you have seen the photos of Ben getting a haircut, you know he can hang upside down, turning a regular visit to Supercuts into an Olympic event for me. Ben would leave with a new haircut and I'd have sore muscles and a bad back, and possibly a few scissor stabbings.

This time, we used the belt around his waist and it was just enough restraint to keep Ben in line. He realized about 1/3 of the way into it that he was not going to get out of the situation so he sat back and watched Bob the Builder on the small DVD I brought.

Not that I am counting, but one point for me.

Sunday, April 3, 2011

Magic Marker Monday: Got the whole world...

Logan is a student at a public Montessori school. He has been coming home with these home-made world maps about once a week. He uses a special punch tool to get the continents just right. We recently saw a picture of Africa, and Logan immediately knew what continent it was.



Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

Saturday, April 2, 2011

By the time you read this...


My sister, Olivia, my friend Wendi and I hopefully have completed the Cooper River Bridge Run in Charleston, SC by the time you wake up and read this. In its 34th year, this world famous foot-race is my first 10K of the year meeting the criteria for the 10K & 10LBS Goal I set for myself this year.

Check out what Nine Charities receive funding from the race proceeds.

More next week on how we survived - Because we will GET OVER IT!