eSpecially Ben

In 2011, I asked parents I knew to write about their children and the issues they face. At the time, each mother shared how they experienced day-to-day life raising a child with special needs and disabilities.  These stories have not been updated or changed.  Start here:  eSpecially Parents Our Kids June July August September Denise's Story May Edition June Edition July Edition September Edition Meg's Story May Edition June Edition July Edition August Edition September Edition Elisa's Story May Edition June Edition July Edition Karen's Story Natalie's Story May Edition June Edition July Edition August Edition Paula's Story May Edition July Edition August Edition September Edition Elizabeth's Story May Edition Michele's Story May Edition Video Link Donna's Story May Edition June Editio n August Editio n Tribute to Donna Grief

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

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

 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.  2011 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 th

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 t

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? D

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.

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 ap

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 wa

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 Etha

eSpecially Parents topic this month is marriage. It is not an easy topic for anyone to tackle because it is hard to be completely truthful about what goes on inside your own marriage - it can be uncomfortable and embarrassing to share the ins and outs of your relationship. And really, whose business is it anyway? Well, I asked the moms of eSpecially Parents to share their marriage stories. Not all jumped to answer and I am sure they have their reasons, but marriage is private. However, I believe we can all learn from one another. Most of us have more in common in our marriages than differences and if we knew what was happening in our own marriage was happening next door, we would feel a bit calmer and normal. Last week while visiting family in New York, I heard a story of someone who would go on and on about how perfect her marriage was every time her group of friends got together. Everything from sex every night to no arguments, etc. This person kept this story of perfection going

Ryan is now 13. I have a teenager in my house – a teenager who is more like a 6 year old. Ok, so are most teenagers, but not all the time. I think this is the hardest part of having a special needs child - for our family right now. But, Ryan makes up for this in so many other ways. Ryan has Down syndrome. He is very friendly, happy and likes to show off. He is a go with the flow kind of kid 95% of the time. He likes trains (and the subway in DC), Disney movies, red boots, taking walks and annoying his younger sister. He loves going to visit his grandparents who live on a chicken farm! To mention his “granmmmmmommy and grandddaddy" always makes him smile and the fastest way to make him mad is to tell him it is time to leave the farm. Ryan is a busy young man. He is proficient at the Wii swordplay game and “practices” every morning before school. After school, he attends a church after school program where he plays with peers and does his homework. He is always happy to see me an

 I mentioned in my original post that we found a new doctor that has adjusted Ethan’s medicine, making his quality of life drastically better. Though, he currently has entered another flare up, Ethan had 35 DAYS fever free with a significant decrease in pain!! Though I am sad that he is not feeling well again and the doctor did tell us he would still have set backs, he has NEVER seen more than 1 day in his 28 months of life without a fever and/or pain! So he is finally making strides and moving in the right direction! His frequent doctor visits and many procedures have FINALLY paid off! Ethan is like a different kid!! Once he felt better he did things physically, cognitively and communicatively he was not able to do before. One day he actually climbed into his booster seat at the table all by himself. Another day he fed himself more than 2 spoonfuls of baby food without spilling. He will only eat certain textured foods and still eats stage 1 baby food due to sensory issues and abdo

When people meet Sophia, the first comment we usually get is about her big beautiful blue eyes. They are very expressive and her spirit shines through. Her eyes speak even when she can't. Sophia really loves being around people and socializing. She communicates by using some words and by the cute sounds she makes. She typically finds a way to get her point across. Sophia loves to laugh, sing, hang out with family and splash around in water. Her all time favorite thing is listening to music and dancing around in my arms. It is one of my favorites too. Sophia has a really sweet personality and is very accepting of others. But don't be fooled by sweet and petite Sophia. She has a fiery side. She is very sassy and will let you know in a heartbeat if she doesn't like something. Like most two year olds, she knows how to roll her eyes and scream if you ask her to do something she doesn't want to do. She can say some things perfectly, especially if she wants it immediately.

My son, Tye, has occasional sensory issues that can overload his system. When this happens, my husband and I have witnessed Tye's very own, "Wolverine" manuever. Like Hugh Jackson's character in the X-men movie series, Tye will be walking with us in the mall and suddenly have the need to put his back flush against the wall and not move from that spot, looking around anxiously or with a huge grin on his face.  We call it "the Wolverine" because in the first X-Men movie, when Hugh Jackson's character woke up in the lab at the school he rushed to the wall with his back to it looking around, trying to figure out what was going on.  We never know when it will pop up or just what will set him off.  Could be the lights, decorations, the acoustics...we haven't quite figured it out yet.  Sensory issues have made life a bit interesting at times.  I never thought I would become a pretty good hairdresser. Tye can't tolerate the buzzer by his ears or nap

Samson’s Winning Run Of course it was raining, not too hard, but the black sky sailed in fast. So many treasured moments unfold under rain. Today the rain fell on my son running the 100 meter race at the Special Olympics. What he actually did was not exactly running – more like walking at a moderate pace, just slow enough to smile at all the people cheering him from the side of the track. Most of the people cheering I didn’t know, but he gets around and he gets known. Samson really has absolutely no competitive spirit. None. He doesn’t care what sport it is, what kind of ball he is supposed to be throwing. For him, it’s only about the sheer thrill of the instant when everybody’s eyes are on him. Those are his winning moments. When he was younger, on Wednesday afternoons, I would take him to ride horses at a farm for hippotherapy . When the sweet horse would quicken into a gentle trot, Samson would let go of the reigns, his arms waving in the wind. The trainer would stop, of course,

Thump! Thump! Thump! "May I juice?" says my son, standing next to my bed. I reluctantly open my eyes, praying it is not still dark outside and that it's a reasonable time to start the day, hug my sweet boy and say "What do you say to Mommy in the morning?" He shouts "G'morning Mommy!" in reply. We make our way downstairs where he gets his game system and orders the curtains opened. I obey, then prepare his juice and cuddle up beside him on the couch enjoying the precious time when it's just the two of us. After a game (or two or three) he heads into the kitchen to turn his "Music on!". We then sing and dance together. These days I am serenaded more often than I sing. Little else brings me such joy as hearing my son, who struggles for words, sing out loud. When it's time for coffee, my son insists on pressing the buttons, measuring the coffee and sugar, then fetching the milk from the fridge. He loves to help and is somew

Hi,   I'd like to introduce you to Ben and tell you a few things about him.  He's a very happy child, nonverbal but makes lots of sounds to express his likes and dislikes.  We are continuously working on weight baring and strengthening his upper body.   A typical day for us is to wake up around 6am in order for Ben to ride the van to school.  I pick him up close to 2pm everyday, unless he has therapy, because he doesn't have much energy after 12:30pm.  I found that if I push his body too much, it weakens his immune system and he becomes sick.  Common sense really helps during times like these.   Once he's home, I keep him out of his wheelchair as much as possible and we play.  It's really physical therapy, but he thinks it's play time.  Good.  If he's too sick to lay on the floor because he has lots of drainage issues, I'll take him for a ride in the car.  He loves 18 wheelers, singing, people who talk loud, and going through the drive thru. 

Denise  Luke is a sweet three year old with CHARGE syndrome. He has had a rough start in life with multiple surgeries, hearing loss and developmental delays. Despite all his challenges, he almost always has a smile on his face and a deep laugh which is very contagious. As I mentioned in my first post, Luke has facial weakness on the right side of his face which makes his smile lopsided. About one year ago, our family traveled to Houston and Luke underwent a 10 hour procedure to graft his masseter (chewing) nerve to his weakened facial nerve. After waiting almost a year for the graft to grow Luke can now make a full smile when he bites down and clenches his teeth. It is sometimes hard to see the success of the surgery since Luke cannot understand what he needs to do to activate his new smile. We still see the same lopsided smile each day. On the other hand, when Luke is able to make the correct facial movements to evoke his new full smile it is extremely exciting for us to watc

Last month you were introduced to nine women who have remarkable stories to tell about raising a child or children with special needs. Although I know most of these women well, I learned more about their struggles and triumphs through their words. Comments posted on this site, Facebook and ones I have received privately have been positive. One writer shared that these are stories she had wanted to write, but did not have the forum. In other ways, connections have been made between families and resource information has been shared. I am encouraged that this series is bringing readers and writers together to connect, share and possibly inspire one another. This month each woman will write about their child or children with special needs - likes, dislikes, joys, difficulties...really anything they see as important to help you better understand their child. And if you missed the start of the series...catch-up here.