Sunday, July 31, 2011

eSpecially Parents July Edition: Meg's Story

I am a mother to four year old boy/girl twins. I have a 20 year old step-daughter who has never lived with us and who we rarely see. My son was diagnosed with Autistic Spectrum Disorder in November 2010.

From a very early age, my children were, as the English say 'chalk and cheese' - as different as night and day. My daughter was happy, outgoing, easy to please and to play with, and constantly wanting Mommy's attention. My son was happy, but more content playing on his own. He actually taught himself to walk and now he is teaching himself to read.

My daughter has grown up listening to and dealing with my son's tantrums and repetitive play scripts. In order for her to have a playmate in him, she has had to learn to 'read' her brother and play his way, which is sometimes very difficult. I know we often expect much more from her than we do from him and this bothers me. I find myself scolding her for not telling me when he's getting into something or asking her what her brother is doing.

Our lives are so different from the other families we socialize with. We cannot just pick up and go to a new park, playground, shop, etc. We have to prepare my son for anything new with photos and social stories. Even then, we sometimes walk into a new place and walk straight out. This is extremely difficult for my daughter, and very unfair, but we know of no other way. To make up for her disappointment if an outing doesn't go to plan, we do special little things just for her. She loves to help her Daddy in the garden, planting and picking fruit and veggies in her little basket. She and I also do lots of craft projects together and occasionally go out shopping together (something her brother detests).

Because my son requires so much extra attention every waking hour, and because I spend every moment I can with my daughter to ensure she feels valued, loved and an integral part of the family, I have not tried to have any more children. I simply don't think I could manage splitting my attention any more. As it stands at the end of the day I feel split in two - and I don't usually feel like I've been the best mother I could be to either of my children. Then again, I am a perfectionist and raising my children is the biggest and most important job I will ever have. I strive to do it right, and regularly fail. The important thing for me is to plan for the worst and hope for the best. A positive attitude is imperative. It would be easy to sink into the mire of self-pity, but that is not the life I want to live or the example I want to set for my children. I have two beautiful children who are healthy, interesting, sweet, loving individuals.

Every day we do our best.

First time reading eSpecially Parents? Catch-up here.

Friday, July 29, 2011

eSpecially Parents July Edition: Denise's Story

Matt and I have been married for 12 years. I always wanted to be a mother and I was finally blessed five years ago with a healthy baby boy, Jason. Two years later we welcomed Luke to our family. Luke was born after a normal pregnancy but was sent to the NICU since he was 5 ½ weeks premature. During his hospital stay we learned that Luke had some health issues and was later diagnosed with CHARGE syndrome.

Despite his health issues Luke was a great baby. He has an easy-going and happy personality even while under-going multiple surgeries and procedures. The decision to have more children after Luke was not an easy one. On one hand, I loved being a mother to my two amazing boys and yearned for one more child, hopefully a daughter this time (although I would have been happy with three boys too). On the other hand, would we want to take the chance that our next child would be born with a disability? Luke’s expression of CHARGE is relatively mild and I knew it can be so much more debilitating.

After consulting a few specialists including an OB-GYN who handles high risk pregnancies and two geneticists, we learned CHARGE syndrome is caused by a sporadic genetic mutation. It occurs in 1 in 10,000 pregnancies and the reoccurrence rate is at most 1-2%. Most of the time kids with CHARGE are born to families with no family history of the syndrome. The exception is when a parent has mild symptoms of CHARGE the reoccurrence rate can be as high as 50%. Since Matt and I don’t fit into this category our risk was estimated to be the same as the general population. We had a higher chance of having a baby with any other genetic abnormality since these occur at a rate of 3-5% in any given pregnancy.

When Luke was 2 years old we found out we were expecting again. Since I already knew the facts, I wasn’t too concerned about having another child with CHARGE. Still, we made sure I was seen monthly by a high risk OB-GYN and had frequent high resolution ultrasounds because there was still that small chance something could go wrong. After each ultrasound I was able to breathe a big sigh of relief. Our baby girl seemed perfectly healthy.

Madelyn was born after a full term pregnancy this past November and she is such a gift to our family. Her brothers adore her, especially Jason, who will show her off any chance he gets. I even caught Luke lovingly stroking her head one day which was sweet considering how rough and tumble he can be. Life with three kids under the age of five can be crazy but it is well worth it.

After having a special needs child it is often difficult to consider another pregnancy. Not only did we worry about the reoccurrence rate of CHARGE but we also wanted to make sure that each child would be able to have their needs met. Although it can get hectic around our house at times (or most of the time) I feel very blessed to have three wonderful children who each enrich our lives more than we could have ever imagined.

Wednesday, July 27, 2011

First Day of School

Here are my annual photos of the first day of school. Sean is just glomming onto his brothers' first day of school. His is next week.

Ben and Logan attend different schools but wear similar uniforms - polos with khakis.

I was not successful in getting the school to allow Ben to walk onto the bus without the Convaid Stroller - at least for now. However, they are meeting Ben at the bus with his walker. According to the teacher and by judging how tired Ben is at the end of the day, I think he is spending a fair amount of time in his walker. One night, Ben actually fell asleep at the dinner table.

New school & environment, but familiar people are with Ben throughout the day. The principal and assistant principle know Ben from when they worked as a team at his preschool. And the kicker...we walked into Ben's classroom at Open House and the teacher is a friend and neighbor with whom we lost touch after they moved away ten years ago.

I don't know how it happens, but things have a way of working out for Ben.

Tuesday, July 26, 2011

Stand By Me

Sorry - the video will no longer work! I will keep working on it.

At the pool, Ben initiated this activity over and over. It was the first time he has ever done this. He must have done it at least 40 times. He knew what he was doing was good and he kept practicing. All his cousins, grandma and aunt were there to witness this enormous achievement. Other children in the pool gathered around him to watch. It was a very special thing to see.

When you need a smile...

talk to a three year old.

At our house, Star Wars is the main event - from playing with Star Wars Legos to watching the movies to fighting with Light Sabers. One day Logan and Sean, were acting out the duel to the death fight between Luke and Darth Vader, with Logan playing Luke and Sean playing Darth Vader. I overheard Sean say to Logan, "Luke, you are my son." Well at least he got the familial relationship correct, if not the line.

My Dad and his brother Arnie are identical twins. I am sure that over the years, they have heard every possible comment about their resemblance. They may have added a new one to the list when Sean said, "Uncle Arnie, you and Grandpa have the same head."

Having a bad day? Need a pick-me-up? Find yourself a three year old who will most likely have something funny and insightful to say.

Thursday, July 21, 2011

Saying Good Bye

I have written about Dwayne, Ben's OT, for the past several years. Dwayne was part of Ben's Speech/OT Dream Team. For personal reasons, Dwayne must move from the area.

Ryan has taken this the hardest. It is the first time he knew one of Ben's therapists. Dwayne came at a time that Ryan was home from work and their mutual love of basketball and football developed into friendly banter about which teams would do the best and worst.

When Dwayne told us about the changes coming, I was not surprised or broken-hearted. Ryan thought I was being cold, but Ben has had more than seven years of therapy, meaning more than seven years of therapists. I have seen good ones leave and have had a hand in helping bad ones go. Some have come back to us after moving away. Some I see at the park and library with their own children. Some have referred their new clients to this website, and I have become friends with the clients. Some keep up with us on Facebook. And one drives with us to New York every year.

Therapists come and go, that is how it works. It does mean having to get to know a new person, learning about their style and letting them know how our family routine works.  Then there's the hazing that Ben puts everyone through. But we will get through it and I never know what the possibilities may be with a new therapist seeing Ben through a different view.

As for Dwayne...he will not leave our life. He left his mark on our family, and we will remember his caring, gentle and positive manner. And who knows, he may even show up at our door one day, ready to put Ben to work.

Tuesday, July 19, 2011

Summer Fun: Frank Melville Memorial Park

Grandpa and Logan after finding the Bamboo Forest.
My father somehow promised to take Logan to a Bamboo Forest on Long Island last year. They talked about it a lot, and it was built up so much over months of planning that I was worried that Logan would be disappointed. No such thing - it was truly a forest with trails for the kids to explore.

I had been to Frank Melville Memorial Park many times as a teenager and adult, but did not remember all it had to offer. Check out one woman's Photo Essay for the Frank Melville Memorial Park. If you live close by you will want to visit. We did see a bunny and a very large turtle (3-4 feet in length, including tail) swimming in Mill Pond.

Monday, July 18, 2011

eSpecially Parents July Edition: Natalie's Story

When Mark and I first starting thinking about having another child, we were hoping to have a diagnoses for Sophia so we would know what to test for during the next pregnancy. Despite seeing many specialists and having her DNA tested in the Netherlands, we had no answers. At that point we realized we may never get any answers. Mark and I believe that it was a spontaneous genetic change that occurred at the very beginning stages of development. There is a one percent chance that it can happen to anyone. We decided not to wait for any answers.

The decision to have another child was very easy for us. We were scared but we knew we wanted more children. We had several high level ultrasounds and at 16 weeks pregnant we found out that Alex was a healthy baby boy. The picture was clear as day. The moment the 3D image of his face popped up on the screen a ton of fear was lifted. As time would go by, I would start to get scared again. My doctor let me get an ultrasound anytime I felt nervous or just needed reassurance that everything was ok.

Before Alex, caring for Sophia was all I knew, hard work doing therapy to build strength, doing small medical procedures, major surgeries, recovery and long feeding sessions were our normal. When I had Alex everything was a piece of cake. Alex is an amazing baby. He has been so easy to care for. Alex has always been a good sleeper, eater and transitions have been effortless. He is the exact kind of baby we needed in our lives. Mark and I feel so lucky to have Alex. He seems to balance everything in our lives perfectly.

Life has definitely changed since Alex was brought into our world. We feel so lucky to be able to experience a typical child. At times there are two sets of emotions for me. As I watch things come so easy for Alex I feel so much happiness but at the same time I feel sadness for Sophia. I wish she didn't have to work so hard and experience so much pain just to be able to do simple things. When I take Alex out and about I feel guilty that Sophia cannot always go with us since she is medically fragile. I feel great when strangers come up to me and tell me how adorable Alex is. I also feel angry at times, thinking if I had Sophia with me instead, that same person would just avoid us, stare or make a rude comment.

These thoughts and emotions have gotten better with time but I know they will always be there. It is only natural for me to want Sophia to have the same experiences Alex does. Majority of the time I feel happiness for both children. They are lucky to have each other.

Alex gives his sister daily kisses and will cry if he can't get to her. Alex is such a sweet and funny boy. He entertains Sophia and makes her laugh. Her talking, strength and mobility have increased since Alex has been moving around and talking. I think he motivates her to want to do it too.

Sophia has been great for Alex too. He doesn't look at Sophia in any other way than his big sister. He will grow up a sensitive and compassionate human being. He will not think twice about another person because of their differences. We think he is going to be one amazing person because of Sophia.

I feel so lucky to have two amazing babies. The experiences have been very different but the thing that remains the same is the happiness and joy they bring me.

New to the eSpecially Parents Series? Catch up here.

Friday, July 15, 2011

eSpecially Parents July Edition: Paula's Story

Tye is an only child. Some of it is by choice, most of it because of nature. I never thought I would only have one child. I always dreamed of having more kids. I LOVE kids. I would rather be with a child than be with an adult sometimes. Unfortunately, we were not able to have children easily. Tye was an invitro baby. Talk about a child that you wanted more than anything in the world...that was Tye.

We had tried for 5 years to conceive doing all sorts of things to get pregnant. Sex was not a fun past time because it became more of "Let's go have sex. I'm ovulating today" and then positioning myself hoping that gravity would help make a baby. After too many failed attempts to count, we saw an infertility specialist and had to let science and medical interventions do that job for us.

We spent about $10,000 to do invitro fertilization. Luckily it took on the first try. They implanted 4 embryos, 2 took. We were over the moon ecstatic, we were going to have twins. A boy and a girl.

We had a huge baby shower, had cute matching names all picked out. In my seventh month I started having premature labor contractions. At the doctor's, we found out the girl baby was no longer surviving the pregnancy. In order to keep the other baby until full term I had to go on bed rest. Our hearts were broken. We were living far from family, we had many dark days dealing with the loss. We were very nervous during those 2 months of bed rest worrying about Tye.

Tye decided he wanted to be born a month early. Luckily he came out perfectly, he was just a breech birth. Again we were over the moon that we had a beautiful baby boy. Perfect in every way.  Tye reached all his developmental milestones right on track. It wasn't until he was about 18 months old that we started noticing things just didn't seem right. At 2 years old, Tye was diagnosed with autism. Our world came crashing down again. Those first few years, after he was diagnosed, were grueling, as they still can be many years later.

When Tye was four years old, I was at a holiday party with him. My Uncle was there and saw me downstairs alone with Tye. My Uncle saw how I interacted with Tye and how much joy I got from him. He also knew how difficult my time was with him because of his autism.

My Uncle approached me and asked if I ever thought about having any more kids. I told him I always loved children, but the only way to do it was if we had invitro again and we simply couldn't swing that kind of money. My Uncle, who is mostly a quiet, keep it to himself kind of guy offered me something from his heart. He said if my husband and I ever wanted to try to have any more children that he would pay for us to have the invitro.

It was the most amazing, heartfelt gift that anyone could ever offer. I was deeply moved, but told him that I couldn't accept his gift. My husband and I decided we couldn't do invitro again because I had a complication and was hospitalized with a severe, almost life-threatening reaction to the medication. The risks were too great to do it again. We also found that the odds of having another child with autism was greater, and we just could not take the chance. We needed all our attention for Tye and his needs. We didn't want to bring another child into this world with a disability and worry about how they would survive when we were no longer there to care for them when we died. That is our biggest fear, for Tye's future when we are gone.

If we were able to have a child on our own, we would have. Both of us love kids. We look at other people with more than one child and envy them. We would have loved to have had the opportunity to have a "typical child" to experience the "normal" things parents experience with a child.

It's funny trying to write about this. I feel guilty wishing that I had a "typical child" when I have someone like Tye who is awesome in his own special way. I feel bad we couldn't give him a sibling that could be there to help him when we are no longer here. Someone that would watch over him and take care of him.
But who is to say that would have been fair to that child to have that burden and responsibility added in their life. There are so many possible scenarios of the what if's, why us, boo hoo, but right now we are at the place where Tye, at 15 years old, is getting a little easier to manage than he was at 4. He's a great kid who has his own great personality and his own special quirks that I love, and he brings a smile to my face. Do I wish my life could have been different? Oh yeah, but Tye has taught us many things. We have learned to appreciate the little things in life. He's my boy and I love him more than anything.
First time reading from the eSpeciall Parents Series? Catch up here.

Thursday, July 14, 2011

eSpecially Parents July Edition: The Typs

 You will have one of two reactions to what I am about to say - you may be horrified or you may laugh. Ryan, my husband, loving father to our three boys, may sometimes refer to Logan and Sean as "the typs." As in, "I am going to the pool and taking the typs with me."  I did not get it at first.


Ryan was referring to Logan and Sean, our typical children. Okay, breathe, either from laughing or nostrils flaring. Now you can smile, humor is big in our house. And a play on words is just the tip of the iceberg. No pun intended.

When a couple's first child has special needs, the decision to have another child becomes more complicated. Often doctors warn that the next child has a high percentage of having the same issues. I believe Ryan and I were told the same thing, but that time is foggy to me. When Ben was one year old, I knew that I was pregnant. I do not remember worrying about how this next one would be. We asked the OB, and they spent extra time going over the ultrasounds to check the baby's brain development. Other than that, we really did not give it a lot of thought. To us, there was not a lot we could do about it anyway.

Logan was born strong, very large and completely typical. We were amazed everyday by what Logan could do. We marveled as he held his head up, rolled over with ease and met each milestone without us lending a hand. We laughed about how parents of typical children complained how hard it was to raise a child - this was a breeze compared to what we knew with Ben.

We were not careful enough when Logan was tiny and he was bitten by Ben uncountable times. For awhile, Logan introduced him to others as, "Ben, my biting brother." It took a long time for those emotional scars to heal. When they did, Logan grew into an understanding brother - always mindful to make sure Ben was included. I still remember when at two years old, Logan gave the pediatrician a hard time about not giving Ben a sticker after the visit. When the doctor defended himself saying that Ben would just eat the sticker, Logan told the doctor it needed to go on Ben's back. An advocate from an early age, Logan still gives me a hard time if I am feeding Ben when Ben should be doing it independently.

Then came Sean. He is almost five years younger than Ben. At 18 months, we found Sean feeding Ben oatmeal. At two, he would try to help Ben walk. Now at three, he helps Ben use his walker, push him in the wheelchair, wake him up in the morning and feed him gold fish. When Ben laughs, Sean turns to me and says, "Ben is happy."

As I write this, they are all camping together. Ben's needs add a dimension of difficulty to every situation from physical to behavioral, but I think because we want our family to experience everything, we just go with the flow and make adaptations when needed. I think Ryan and I make life as normal as possible for our family. The usual sibling rivalry that includes fighting over toys, second desserts, movie choices and who gets to stay up late lets us know we have achieved normalcy.

Both Logan and Sean have a lot of questions about Ben. Sean used to recite this frequently, "Mommy talks, Daddy talks, Der (his name for Logan) talks, Sean talks, Ben no talks." Obviously he was trying to work out something in his brain.  Logan and Sean have had the opportunity through Ben's school and camp to meet many children with special needs. I try to answer their questions the best way I can with simple answers.  Logan refers to the people we meet as "the needs people."

Next year, when Logan is seven, he will be eligible to attend a local SibShop, a special program for siblings of a brother or sister with special needs. Logan is an emotional and sensitive kid, and I think going somewhere to talk about his feelings, and meet other kids in the same situation as he, will help him understand his world a little bit better.

The future...I do have expectations that Logan and Sean take over Ben's care when Ryan and I are no longer able to do so. My hope is that Ben will be as independent as he can be, living in a group home. I also hope that the expectation to help out their brother is not a sanction, but something done out of love for Ben. 

Over the next several weeks, some of the writers for the eSpecially Parents series will talk about the typical children in their family, their decision to have more children and the issues that face them each day. Other posts from parents with only children will talk about their decision to have the one child and the impact on their own lives.

If you are a first time reader of the eSpecially Parents series, catch up here.

Wednesday, July 13, 2011

Taking Mobility to a Whole New Level

Pictures ARE worth a thousand words. I tell people about the things Ben can do and I get a blank stare or a polite smile. I know what they are thinking, "Yeah right."

Now I have the proof! The photos are current, but these are the same activities Ben was doing pre-seizure, two years ago. Now that he is on the right medication, Ben is back to progressing with his physical abilities. While having seizures and trying to find the right medication, Ben was not attempting any of this climbing.

I am also noticing him understanding more of what goes on around him - seeing someone walk in the room with pizza boxes and understanding what is inside. Grandpa asking him to come to him because he will help him out. Ben is responding more quickly to his environment. He pulled his cousin's hair (again) and he understood that he had hurt her. His face showed a reaction that was approriate for seeing someone cry. This is a change from past situations.

And even though I do not have a photo, Ben got to this standing position on his own and also moved along the counter by himself. If we can keep these seizures at bay, Ben may continue to show off his moving skills. I doubt that Sean is safe on the top bunk from a middle-of-the-night takeover.

Tuesday, July 12, 2011

Summer Fun: Landsford Canal State Park

At the beginning of June, we visited Landsford Canal State Park in South Carolina, a park Ryan found a few years ago while trying to find a new place for a day trip. The park has become one of our favorites because it has an easy path for Ben's wheelchair, playground, picnic tables and is 'home to the largest population of the Rocky Shoals spider lilies in the world.' We also happened to see a red-bellied water snake, box turtle, blue heron and Bald Eagle's nest.

In May and early June, you can see these beautiful flowers blooming. My photos do not do anything justice - if you leave nearby, plan for a visit next year. There are special tours if you sign up in time. I think Ryan has setup an email reminder for us so we get to the park earlier this year.

Monday, July 11, 2011

eSpecially Parents June Edition: Elisa's Story

Your Fathering that Makes Me Smile

As mother of a “different” child, my key role is to shine a guiding light on the path God paved  for him. All along that path are my son’s gifts that illuminate the darker days - days I cannot even grasp a glimpse of light. I am grateful that God’s plan for me is that I do not walk the parenting path alone. In our days and nights of chaos and commotion, I can draw just enough of my sweet husband’s determination to keep focus on the higher things. My fortune is to have a hand to hold as I walk a challenging path. So many things you do remind me daily of the gift of laughter – little things like:

I love that you are “thankful” when you get home at night to see that we cleaned all the windows in the house with baby wipes.

I love the way you cut chicken from the bone into perfect Samson-sized bites with the precision of a surgeon.

I love how you combine the colors, plaids, and stripes of Samson’s clothes on Saturday mornings when you both go to the farm market.

I love how you comforted Samson on that night he thought the valet at a restaurant was stealing our car and that we never used the valet service after that.

I love how calm you can be when the cops are parked in front of our house when Mrs. Hoffman reported that we had been robbed when she saw the screen to Samson’s bathroom window had been punched out.

I love that it never surprises you when you drive up and see that the front lawn is full of toothbrushes, socks, and stuffed cats.

I love how calm you can be when I tell you about our dear boy’s daily whirl of destruction through the house and how the pile of stuff that needs to be glued back together gets larger.

I love how you can still shoehorn yourselves together to both fit in your chair during football season, and how you laugh when Samson mimics the quarterback and shows off his throwing arm.

I love the way you do not seem to mind when Samson cuts all the pictures of cars from magazines (even issues you haven’t read) and tapes them on the walls to decorate the kitchen.

I’ll cherish forever how you looked the first time you held our son in the early hours of his birth, and how I knew from that moment that you would never be the same.

New to the eSpecially Parents Series? Check it out here.

Saturday, July 9, 2011

eSpecially Parents June Edition: Denise's Story

When Luke was a baby I was proud to say he was a mama’s boy. He would reach for me while someone else was holding him and cry for me to pick him up when he would wake or need comfort. I can’t say I didn’t enjoy this attention and I am glad I did while it lasted. Luke has since made a new best friend. His name is Daddy.

I love watching the two of them play together. Luke is all boy and loves to roughhouse with his dad. I often hear his signature laugh from across the house when he sees his dad and practices walking back and forth to his waiting arms. He also loves to hear his dad cheer him on while he plays with his basketball hoop. One of my favorite games that they play is ring a round of the rosy because I know Luke will include me in on this one.

Matt and I have been married for 12 years. Having a special needs child definitely changed our relationship. We have a lot of worry. Will he need more surgeries? Will he ever talk or communicate more effectively? What if he gets hurt? Do we allow him to be more independent or do we need to hover more to keep him safe. We also have a lot of joy. Despite all of Luke’s challenges I don’t have to question whether he is happy. As long as he is reasonably healthy and happy the other challenges can be worked out.

I know the statistics for staying married while having a special needs child are not in our favor and this scares me. The divorce rate for parents of typical children is high enough. Throw in the added stress of doctor’s visits, surgeries, hospitalizations, therapy sessions, medical bills, fighting with insurance companies, and worrying about your child’s future and you can have a recipe for marital disaster. Matt and I try to defy these odds by making sure that we spend lots of family time together. I look forward to our weekends together where we can just get out, have a good time, and de-stress.

One thing I know we need to work on to keep our relationship healthy is having a date night every so often. I know most married couples recommend this special one on one time to keep the marriage alive and vibrant. We recently had a night out for the first time by ourselves in a few years. Although we had a great time, it felt strange not having the kids with us and we spent most of the night worrying about them. On the other hand, it was nice to be able to engage in a full adult conversation without getting interrupted, not to mention several hours free of whining and crying. I think I need to shoot for a night out every month and will try to make this a priority for our sanity.

I know our marriage is not perfect but whose is anyway? Every couple has stress and issues to work out so we are no different. Despite all the challenges we face as a couple, I feel lucky to have a great husband who is also a wonderful father.

New to eSpecially Parents? Check out the series here.

Friday, July 8, 2011

eSpecially Parents June Edition: Donna's Story

Whew! Hello my people,
Let's talk about this thing called marriage. Well, I was married for 3 years and divorced before Ben turned 1 year old. It was tough but I got through it.

The toughest part was going through the legalities of it all. Surprisingly, Ben was the easy part during that time. He kept me busy and my mind was constantly on him. He was very sick his first two years before I knew what the culprit was.

Lesson learned about marriage and having a special needs child was that, not everyone is equipped for special needs. Because of that, I had to make some tough choices to keep my life and my son's life on the move in a positive way.

The one thing that I realized early on was that if I wasn't doing well, Ben knew it and I transferred that negative energy to him. For example, I may have been too drained to take him to the park, or to the pool. Or, I simply may not have felt like interacting with him by doing something like reading a book, and he loves books.

Looking at him, I could see sadness in his eyes and he didn't sleep well. I knew within a few days of this downward spiral that my situation wasn't right for us. So, I did what I felt was best at the time and kept it moving.

I'm always asked if I saw signs of my ex's reaction to a situation such as this and I have to say absolutely not. We all have our way of handling obstacles. Who really expects their child to be born with special needs? I'm happy to have made the decision I did. I handled (and continue to handle) my struggles, and such is life. I'll never let life get the best of me. I REFUSE.

Have an awesome summer.

New to eSpecially Parents, check out the series here.

Thursday, July 7, 2011

Houdini Strikes Again

Having no editorial board for this blog, I often read my posts to Logan before I put them out there permanently. He will tell me if they are "good" or "bad". Of course he enjoys the ones that are about him the most. Several months a go, I wrote a post about when I accidentally did not lock Ben's walker in place and he fell and hurt his face badly. Logan's response was, "Mom, that is bad. Why would you want to tell anyone about that?"

Well here's another bad one. But it is funny too and speaks to Ben's independence, curiosity and abilities. And it serves as a warning to other parents who may underestimate their child's cleverness.

Two weeks ago we spent the week in NY with family. We stayed at my Dad's house and slept upstairs. Last year, I wrote about how Ben climbed on top of two bins to get out of his room there. So this year, I reminded my Dad a few days before our visit that we had to come up with something to keep Ben in his room so that he did not fall down the stairs.

This is what he came up with: tightly closed door, plastic fence and two heavy bins. Seemed like a good plan for a grandfather with a lot of experience under his belt.

On the second night we were there, and really the first night Ben was alone (I slept in the same room with him the first night), I woke at 4:30am to a noise, like a bump. I got up, could not see too well, but heard Ben. He was sitting at the bottom of the stairs, unscathed.

He crawled to the kitchen. I gave him a drink and took him back to bed. He went right back to sleep.

I was awake the rest of the night, heart still pounding from finding him down the stairs. I imagined every noise I heard or did not hear was Ben trying to get out of his room.

After I told my Dad, he fortified his defenses with more bins, and I slept with my door open so I could hear Ben. He still was able to get through the barrier, very quietly and without even moving it very much. I became a light sleeper the rest of the week.

After my heart stopped pounding a few days later, I let Ben show me how he got down the stairs - slowly going down on his bottom, one step at a time. Now that I know Houdini's little secret, perhaps we will be prepared for next time.

I am doubtful though...Houdini usually finds another escape act to wow the crowds.

Wednesday, July 6, 2011

Special Exposure Wednesday: Cousins

My sister has three kids too - two boys and one girl. Our kids are all basically the same age, ranging from 7 to 3. We both make an effort to get the cousins together as often as we can throughout the year. With a 12 hour drive or expensive plane tickets keeping us apart, it is hard to do, but we manage it about three times a year. It is worth the money, time and extra work - these kids love spending time together.

It is like the months since they last saw each other disappear. They play, play and play. We really have to do little to intervene - they include everyone and share the toys most of the time. And it helps that they all enjoy boxing, wrestling and Star Wars!

Sunday, July 3, 2011

eSpecially Parents June Edition: Natalie's Story

Mark and I have been together for 7 years and married for 4 years. He proposed to me in Central Park during an overnight stay in New York on our way to vacation in Aruba.

Of course I said yes and the next day we flew to Aruba. While sitting on the beach, we spontaneously decided to get married while we were there! I found the perfect dress at a small boutique just minutes before the store closed. It was the only white dress and it happened to be my size. Our wedding planner at our hotel set up a
beautiful beach ceremony at sunset. It was on the last night of our trip, which happened to be our 3-year (dating) anniversary. It was amazing, spontaneous and better than we could have ever imagined.

Several months later Mark and I decided to get pregnant. We found out that I was pregnant very early. I was only two weeks when the test came back positive. We were very excited. I wanted to do everything right. I was very healthy throughout my pregnancy.

Mark went to every doctor's appointment with me and everything was routine up until 32 weeks pregnant. We spent hours with several doctors giving me a detailed ultrasound. They finally told us that our baby had differences to her face, hands and feet. There was a chance she wouldn’t be able to breath on her own and may not survive birth. They had never seen anything like her.

Naturally, we were in complete shock. I remember the ride home very well. We both held on to a very tiny piece of hope that the doctors were wrong, even though they told us that they were 100% sure of what they saw. In an instant, our dreams for our baby and our future had completely changed.

We had 6 weeks to prepare for Sophia, not knowing what to expect or anyone except each other to lean on. It was the longest most painful 6 weeks we had ever experienced. It felt like I had a ton of weights on my heart from the moment I woke until the moment I fell asleep.

Mark and I were there for each other and helped one another out during those 6 weeks. We talked openly and honestly about our feelings, the good and the bad. When I was down he would lift me up and when he was down, I would lift him up. We comforted and cared for each other. He took really good care of me during that time. I didn't realize that those 6 weeks would define the way we would handle things once Sophia was born and the way we handle things now.

Our journey is very different than the typical one but we don’t let it overtake our lives.

Yes, we experience many heartbreaking moments – like watching Sophia go into (and recover from) many surgeries and struggle to do the simplest things. Sophia does it with a smile & a laugh and simply moves on – and that’s what we do too. Even with all this heartbreak, love & happiness for our children and ourselves is very important to us and we make sure we experience it even during the tough times.

Sophia recently had her 6th surgery. It has made a huge difference in her life and has dramatically reduced the daily pain she experienced for months. She is now happier than ever, making a lot of progress and even sleeping through the night!

For the first time in over two years, Mark and I have our evenings to ourselves. It has been so wonderful to have some quiet time together. We feel rested and more energized. We have been going on more dates and we've even had a few overnight getaways with some planned in the near future.

Mark and I have changed and experienced so much together. In many ways, our relationship has stayed the same. We laugh a lot and we don't take life too seriously. Somehow Mark still makes me laugh hysterically, especially during the most inappropriate times.

It has been so important to our relationship to make time to just be a couple. Our relationship is stronger, closer and better than ever because of what we have been through together. I feel so lucky to have him by my side. I don’t think I could go through this and be so strong and positive without him.

New to eSpecially Parents? Check out the series here.

Saturday, July 2, 2011

eSpecially Parents June Edition: Meg's Story

Once upon a time there was an American girl who fell in love with an English boy, moved to England and got married.

The couple enjoyed every minute they spent together, as the English boy worked long hours. The American girl taught herself to cook and spent most of each day researching new recipes and shopping for ingredients to make a wonderful meal for her husband to come home to.

On weekends the couple slept in, woke leisurely and headed off to the movies or a long drive through the countryside, or shopping in the city. The couple was blissfully happy together but knew something was missing. They desperately wanted to have children.

After a year of trying, the couple was doubly blessed with news that they were expecting twins! Yes, I am that American girl and my husband is that English boy. We have been happily married for 7 years.

For the first 3 years of the children's lives my husband worked 12 hour days away from the home 5 days a week. The year the kids turned 2 was the toughest- with our house being sold, we moved into a rented house and my son's tantrums erupted. He would not leave my side day or night and I found it difficult to cope with his increasing demands while caring for my daughter as well. My husband often came home to one or more of us in tears. We knew we needed to make a change.

In March 2010 my husband quit his job and we packed up sticks and moved across the country to a beautiful, quiet, safe and friendly village. The children started at the local pre-school, we found a lovely church and settled in to our new lives.

I cannot put into words how much better, calmer, easier our lives are now. Of course we have our tough times, but we take each day as it comes, and work hard to keep our relationship and family strong.

Fridays are reserved for my husband and I. We drop the kids off at pre-school and spend the day together. We might tackle a project that needs doing, go out to lunch, or cuddle up to watch a movie. It's our way of enjoying our brief time together, the way we used to do before our lives were turned upside down by children and Autism.

First time reading eSpecially Parents? Check out the series here.

Friday, July 1, 2011

eSpecially Parents June Edition: Michele's Story

Marriage and having kids is hard work to begin with but when you throw in a baby with a life threatening disease and developmental delays that is the true test! I’m not going to say our marriage is perfect or horrible because I believe we are somewhere in the middle.

Some days I want to hit him over the head with a frying pan but then other days I adore him but I think that is normal even for couples that do not have the struggles we face. I think the key to marriage, whatever hurdles are faced, requires both parties to work harder than anything else in life.

Rich is a wonderful father and Ethan idolizes him. They often play “cars and trucks” together. When Ethan isn’t feeling well he cries constantly, wants to be held all day and night and we are stuck in the house for days or weeks. So I can go a little stir crazy.

Rich understands that on certain days if I don’t get out of the house by myself that I will turn into a monster! He participates in feeding, bathing and putting Ethan to bed, no questions asked, just so I can be an “adult” sometimes!

Even though he does spend a decent amount of time with Ethan and has been to many doctor visits, physical therapy sessions, etc., Rich is often in denial about his disease and our situation. He can’t seem to grasp the fact that our lives are changed forever. He just expects things to be the way they were before Ethan, 2+ years ago. This is probably the biggest strain on our marriage.

We are very different in the way we handle things which most of the time is advantageous but in Ethan’s case, it can be very tricky. Everyday is a challenge for our whole family. We have had many joys and disappointments. I can honestly say that I wouldn’t want to ride this rollercoaster with anyone else but my husband, Rich. He’s an amazing co-pilot and partner on good days and bad!
This is us at Relay for Life - It's a fundraiser for research for all cancers. Rich's students asked him to do it. He won 2nd place in the Miss Relay contest. Men dress up as women & walk a lap around the track & collect donations in their purses.  Haven't laughed that hard in a looooong time!!

First time eSpecially Parents reader? Check out the series here.