Thankful That We Are Not Alone - Guest #5

Today's guest is a friend I've made on the great social network of Facebook. Our only original bond was our babies with the surprise gift of Down Syndrome. We have since found that we have much in common and it has been a pleasure to get to know her.

Please enjoy Cara's perspective:

"It always amazes me how our lives can be forever changed in a instant. You are suddenly thrust into that "club" or that "group" that you never signed up for. And as much as you want to hide and run and escape and find another "club" to join, your life is undeniably altered. You know that there is no going back. That is kind of how I felt having Benji. Benji is number six for us, and our whole family could hardly wait for the birth of our third boy! We were thrilled to say the least. The anticipation for him was high and the count down for him was exhausting as he remained in my tummy many days past his due date. But his arrival was perfection and every prayer about his birth was answered. The lights were dim, and the normally noisy house was so quiet and peaceful. It was early, early morning. I remember hearing the faint sound of my two year old's worship music in her room. The pain was more than I thought I could handle as he made his quick debut into the world. I discovered that size does make a difference! There he was - our nine pound, six ounce beautiful baby boy in my arms all cuddly and sweet seeking his mommy's love in return with that addicting newborn smell. It was instant love. We bonded skin to skin, and I knew that I was blessed forever.

I did not know he had Down Syndrome. I knew that something was different than my other five babies, but I could not put my finger on it. But that did not matter; he was my son, a gift from God. I was soaking in every move he made and every breath he took. I was in that state of awe you are in as you welcome your new baby into your family. Down Syndrome was suspected the next day after a discussion with my midwife. It was a very sweet discussion. I learned that my midwife had been praying how to bring up her suspicions to me. God answered her, because I came right out asked her when she came back to check on us that day. I had wondered the next morning after he was born. It was then confirmed by the test around 10 days later.

I want to pause for a moment and say that I have read the birth stories of many mommy bloggers now that have had a range of emotions on learning the news that their babies have Down Syndrome. While I certainly had emotions and can somewhat relate, I never experienced the deep painful emotions or concerns that some women have expressed. I had peace with his diagnosis. I was so thankful for him and even thankful for his having Down Syndrome. Yes, I knew the health issues that we possibly faced, but I really had God's awesome peace about those, not fear. The Lord had prepared my heart in so many ways before he was born, and I am thankful for that. I felt so deeply blessed to be his mommy and did trust God's Word that he was fearfully and wonderfully made, and that He knit him together in my womb perfectly. I did immediately feel a protective feeling for him come over me that I had never quite felt before. And I want to make the point that I do not say any of this by any means to judge how another mama felt. And I certainly do not think that the raw emotions that they have been so open and honest about and kind enough to share are bad. I think the contrast of how I felt that leads up to the rest of this piece.

So, with all that said, I was ready to live my life as we normally did. Yes, I knew that I would be facing some uncharted territory for our family. I knew that therapy was most likely coming I knew that the extra doctors appointments were inevitable. But my focus was not on the Down Syndrome. So, I was more than taken back with many of the reactions from friends and family. That is when it really sunk in that I was now in a different category, so to speak. We were a family now a part of that "group" or that "club". I had people referring me to Down Syndrome support groups. I had people, with I am sure good intentions, thinking that I needed a harsh wake up call for what the future held for our family. I heard lectures on things that would be coming twenty years later. I heard all about the bad news about Down Syndrome. I even had people using the "r" word about him. Now, that did stir up raw emotions in me. So many people seemed to focus on his condition so much. Not everyone, but many. Some of these people had never even met him. I just wanted to enjoy him and be excited for this new life as we all were with all my previous babies. And I was with him daily seeing what he is - a happy, content smiley baby boy that loves to give and receive affection. I witnessed each member of our family with this precious baby. The love that he has brought is worth far above rubies. The gift he is to our family is something I cannot adequately describe with words. He lights up our days.

So, I was also faced with the stares and not knowing what to say to people or when to say it. And everyone you asked had a different opinion about that. And yet, he is just so normal to us. He is just a normal kid with an extra chromosome. It is not much different than having a baby without Down Syndrome, other than the health issues that arise on a more regular basis.

So, here we are, a part of this "group", this "club". And it took me a while to accept that label because I so just wanted to be normal, whatever normal is, right? But I did not want to stand out or have people feel sorry for us or being labelled a particular family. I did not want to enter this world where people were trying so hard to be so politically correct around us. But now I am there - a part of that "club" that I didn't sign up for. But you know what? Oh, how I love, love the other people and kids and families that are a part of this "club" that they also did not sign up for. I wouldn't change a thing. I am so thankful to be in this "club" and I would love to adopt more kids in this "club." And I have learned what people are missing out on are the very special blessings of God. We fret our entire pregnancies about this condition and get tested and sigh a big sigh of relief when they come back negative. We are crazy. Mommies with kids with Down Syndrome know a love that they never thought they could imagine. We know this "club" is a blessing, not a curse. We know how very special our children are and how they touch our lives so. Our world is tainted by a lie. Once we are faced with reality, we realize that we were fooled with a lie. The true freedom comes from realizing the truth and praising God for the blessings He gives us. These children are His creation.

And now I am light hearted about the reactions to Benji. The other day at church, a couple was commenting on him and saying how cute he was. The man said, "Wow, he really has that tongue thing going on, doesn't he?" I had to laugh. He really does have that tongue things going on and it is oh, so adorable!! And I have people coming up to me to see the baby and that stare seems to go on and on followed by that perplexed kind of look. And I am so grateful to call him my son and not be concerned about what they are thinking or what I should say or not say. I celebrate this guy! He is going to change lives, I know. We are so excited to watch him grow and become the kid, and then the man that God has designed for him to be. And I remember what it is like not being in that "club". And I would never go back. God truly knows best."

Thankful That We Are Not Alone - Guest #4

This was a bloggy friendship formed by this very blog. Missy and I share the unexpected lives brought us by our "Special Gifts."

I read her blog that she contributes to Dakota Recipes and get the munchies regularly. They are all easy and most look very kid-friendly. I have decided to take this blog with me to the grocery so I can actually try some of them... :)

She has a personal blog that I thoroughly enjoy. Life Ain't Always Beautiful. It is literally a little bit of everything. Pictures, reflections, stories, crafts...it's like hanging out with a friend.

Please welcome Missy's reflections on her Munchkin Prince:

"My son "The Munchkin Prince" is autistic. He's at the lower end of the spectrum. He can communicate, but it's hard for him think and formulate words into sentences that are logical to everyone. There are a lot of times where I can't even understand him and his wants. It's at those times that I find myself the most frustrated.

The Munchkin Prince was born in April of 2006. He was long over due and was finally born after a LONG 30 some hour labor. I thought that he was perfect. I loved his beautiful little blue eyes and his sweet personality. I just fell in love with him.

When he was about 18 months old, some of our family members started commenting on his behavior. Particularly the fact that he didn't talk. Some family members just said he had trained us to spoil him and that we needed to force him to talk. Try forcing a kid to ask for a sippy cup when they can't - really, I dare ya!

The first time I heard the word autistic it was from a friend of mine that works with social services. She looked straight at me and told me that she thought he was autistic. I waited until she left and then freaked out. I got on the net and Googled everything about autism and noticed that he met a lot of the qualifications for it.

A short time later his pre-school teacher and his education team decided to have him tested for autism. Needless to say, I was not surprised with the results of the test. It broke my heart. I felt like a failure as a parent.

Now the Munchkin Prince is in the first grade and doing fairly well with his spelling and some his work. He doesn't read and is really lacking in in his social skills, but he has really improved since starting school. He hates noise. He doesn't like to be in a crowded room. He's really shy and quiet and withdrawn. The issue we are having right now that scares me the most is his lack of understanding for his safety. Apparently he tries to leave school by himself and walks in the wrong direction and down the middle of the street.

He also tends to throw gigantic fits which are not only embarrassing but I find it hard to tolerate other people's opinions about them. He's a kid. He's not normal. I'm not normal. Our family is not normal. And I didn't ask for your opinion.

Not that I won't welcome the opinions of other parents with children with special needs. I just don't see a need for strangers to offer condescending advice when they don't have a clue about our situation."

Thankful That We Are Not Alone - Guest #3

I am incredibly honored to share with you our next guest. She has a blog that I have been following for about 6 months called The Ordinary Life of an Extraordinary Girl which chronicled her daughter, Alex, who was 16 and a Sophomore in High School. She has started the second "chapter" of her story which is chronicling Alex as she is 17 and a Junior. This has the same name, The Ordinary Life of an Extraordinary Girl but has a different URL. This (these) blogs have been an enormous resource for me and has offered advice, on purpose and just by virtue of the stories she shares. Alex is an amazing girl and I hope Elise can follow in her footsteps!

Please welcome Gary as she shares what is on her heart:

"My extraordinary daughter, Alex is 17 years old. We call her extraordinary because she is...she has an extra chromosome, and an extra huge smile, and she brings extra sunshine to our lives. However, this does not come without it's challenges, particularly related to education. which is a right guaranteed to all children.

In these past 17 years I have learned a lot about the education of children with special needs, and in particular, Down Syndrome. There have been lots of good and some bad. Alex has learned to read, write, add, subtract, multiply, divide, tell time, count money, speak clearly, and advocate for herself...the list goes on and on.

In today's world all we hear is "budget cuts" and I know there are massive budgets measures being handed to our educators and the educational system. However, I do not believe that because there are budget cuts, our kids should suffer. Through teamwork, brainstorming, and maintaining good relations with Alex's team we are still able to create an inclusion and supportive environment. this is the only was my extraordinary daughter learns, just like her brother, her sister, and her "regular peers".

I fear that these budget cuts are mostly affecting the youngest kids, or the zero to three population. I believe that early services, or commonly called early intervention, should be mandatory for all children with special needs. I also believe, in most cases, a balance between public and private services must be considered.

There are countless stories and studies proving this. I have seen and heard of children that were born in the forties and fifties who were either institutionalized (as that was the common advice preached by the medical community) or kept in seclusion in their homes. We can compare these babies, as adults, to those children that were brought home from the hospital, educated and received early intervention - mostly by their parents and siblings. This life-style guaranteed their successes, and many of these disabled adults are active members of our communities today.

Our school district had a program called PIE. I cannot remember the real name and it is no longer in existence in that form. In this program, other moms with kids between the ages of six months and three years, met once a week in a classroom and had our version of a playgroup. This included speech, occupational, and physical therapists, as well as an early childhood educator. These services were also available more often as initial assessments and evaluations were made, and appropriate therapies recommended.

We moms were also able to share and support - a very important thing to a parent with a baby with disabilities. We were able to get thoughts and ideas on our children's strengths and weaknesses from professionals. I knew very early on that we did not need to concentrate on Alex's muscle tone - her strength would come - but we did need to focus on her speech.

To that end we worked with a private speech therapist - at the time is was covered by insurance - and Alex learned to sign. Signing was a miracle, it turns out. Children with Down Syndrome do form language in their minds, but have difficulty transferring this to understandable sounds. Speech is very delayed.

The theory behind signing is kids will gain confidence when they learn their families can understand their needs. This will help language come faster. Alex was able to make simple signs, "more", "play", "drink" at eleven months. We were able to communicate and it was gratifying for all of us. She spoke her first words and 15 months and her real sentences came at three.



Speech is still a huge issue for us. We are certainly able to understand Alex and she does speak in full sentences. But, this has been a huge challenge for us in the school system - kids with Down Syndrome need reinforcement. Someone once said to me "Alex talks, isn't that enough?" Absolutely NOT, with out constant reinforcement she will regress. Alex now speaks clearly, in sentences and we have great conversations. She had a great foundation to work from, and always improves.

I do not want to leave the impression that this is a struggle - sometime it is - but often it is not. We have met caring and concerned educators and professionals in Alex's journey through the educational system, and we have met others that are not as caring. But, overall I believe, that with the right people and right services - Alex will succeed and will leave a positive impression on everyone who crosses her path. And that's part of our job as parents of this extraordinary girl.

Our kids have the same right as all kids...but sometimes we have to work a little harder to make it happen. Believe me, it is worth every second, every day and every year we spend. The rewards and promise of a big, beautiful future cannot be compromised."

Thankful That We Are Not Alone - Guest #2

This is a very interesting perspective that my very dear friend, Lynn, was able to give us as parents...I, personally, found this fascinating and encouraging all at the same time.

"The Way I Am

I was born with a profoundly cleft palate. What this means is that the entire roof of my mouth, including my uvula was missing. At the time, there was a new surgery to repair what was missing. I was actually the very first child in my hometown to have a successful repair using this method, which is now the medical standard. I had two surgeries, one at 17 months and another at 3 and a half, which I still remember. By the time I was 4, all the worry and work was over with and aside from some extra dental work I would need, I was mostly just like every other kid, medically speaking.

Now that you know my medical story, I'll let you in on how it really affected me. I didn't know any different. I had never been a child without a cleft so I missed nothing. I wasn't sad that I had to be weened and drinking from a straw by the time I was 16 months old. Sure, it was hard on my parents, but to me, it was just how life was. I had my last surgery right before Easter which meant no chocolate bunnies for me, but my hospital room was filled with stuffed bunnies that friends had sent. They were more comforting and lasted a good bit longer than any chocolate bunny. I was thrilled. I do not remember any pain. I remember my parents insisting that my medical care be perfect. I remember being loved and cared for. I do remember being afraid of people in white uniforms like nurses, split toilet seats like hospitals have, and plain rectangular band-aids, but those fears quickly vanished, thanks in part to my grandfather bribing me. I wasn't afraid of doctors and hospitals because they make you feel better.

Things were actually more difficult for me when I started school. My voice was more nasal than everybody else so I got picked on by the mean kids. My friends stood up for me until I was ready to stand up for myself. It was a bit of a shock to me because every time I went to a doctor they marvelled over how well I spoke. I chose to believe the doctors knew what they were talking about and that kids were just uneducated on how special I was. I had worked hard to learn to talk and no one was taking that from me. It also helped when I noticed that every child was picked on about something, even the kids that had born perfectly normal. I just had a doctor's note for mine.

Now that I am an adult, having a cleft is almost never an issue. Mostly it comes up in doctor's offices because it is kind of hard to miss when you look in my mouth. In short, all the bad is gone and the good remains. To me, although it was my cleft, it was my parent's battle. They were the ones who knew how different my life was. They were the ones who had to deal with all of the special issues. My parents had to come to terms with my birth defect. I wasn't different to me, I was the way I had always been."

To enjoy more of Lynn's thoughts on life in general, follow her blog The Life and Times of Rixie the 4th. She is always a pleasure to read!

"Thankful That We Are Not Alone" Project

I have had a couple of questions about this project in conjunction with some specific requests I've made of a few people.

"Thankful for there being others out there with Down Syndrome?"...not exactly...but...

The hope in this project that we'll find that we aren't all that different from other parents...typical or special...

Many parents with kids with special needs feel isolated. That they are the "only ones" because their child is different than their friends' kids. They tend to worry and be sad and lock themselves off from others as a protection device for their kids and their own broken dreams and plans...and by "protecting themselves" their friends get hurt and don't learn how to support. It is a vicious cycle.

Also, sometimes we get so bogged down "putting out fires" you know, the tyranny of the urgent...in the medical necessity, the educational concerns, the putting your head down and trudging, you forget that there are others out there literally with the same needs and concerns as you...who are a couple years ahead of you in the same path or side-by-side, that can give you advice and emotional support...and then you also forget who you were a couple of years ago and forget to reach out a helping hand to someone coming behind you...

This month's project I'm hoping will open doors, offer support, give advice, and generally encourage each other...eliminate the alone-ness for those with kids with special needs, diagnoses, stages, or even just "the not perfect" in your life that you weren't expecting.

So, I extend the invite again, come on over and share!

Thankful That We Are Not Alone Project - Guest #1

My friend Susanna is my first guest blogger. Kudos to her for being willing to go first!

"Micah is my six year old son. He is on that "spectrum" no one wants to be on.His teachers say, however, that he's a big conundrum to them. In many ways, he doesn't fit the typical autistic child. Most of his issues, they say, stem from sensory stuff. The only thing definitive is that he is on the spectrum. And, that's hardly definitive, since no one really understands autism anyway. The latest diagnosis is what they call, in the state of Georgia, Severe Developmental Delay. Or in other words: ?????

Unlike many parents, I did in fact worry when I was pregnant that something could be wrong, being the constant Debbie Downer I tend to be, but I prayed and hoped for the best. But when he came out looking so perfect, so cute and healthy, those fears were laid to rest. About a year later, and my son was not hitting his milestones, we chalked it up to him taking his time. When a year and a half came, and my son went behind what I call "the window", I asked my doctor to do a screening. My doctor said we would wait until he was two. I knew something was wrong, so when he turned two a few months later, and was found to be behind, we hit the ground running with getting his paperwork through, and getting into some programs. My pediatrician said, "You need to stimulate him a little", and that was the first bug in my ear that is was probably just me not knowing how to be a good parent.

Many programs proceeded. He was observed a lot, and many experts had their different opinions on what category Micah fit into. This is the part of the story where I'll say I understand why over 80% of couples with a special needs child separate. My husband was grieving in his own way, and had to withdraw from Micah for a while. The pain of seeing his son turn out to not be typical, and to not know how to help help him was too much. He withdrew from Micah, and inevitably, me. I immersed myself in programs, volunteering, moms' groups...anything that would keep me busy, and my mind off of what was happening. I was heavily involved with Micah, and yet too busy to have many pity parties. Looking back, I see that those years were harder for my husband than me. If I could say anything to women, it's not that your husband doesn't care, but as strong as men are, in some ways, they are incredibly fragile.

Micah was not just difficult in public, he was...well, embarrassing. He not only threw a fit when he didn't get his way, he would violently head bang...on anything. He even put his head through a plate glass window once. And the parenting advice was plentiful. "Give me a week with him, he'll be talking." "Are you spoiling him?" People would come right up to him and tell him to behave. And of course, there was the "friend" that love to compare my children to other kids his age that were "thriving" and "brilliant". I won't talk much more about these instances. I'd love to say that I was too tough for them to penetrate my heart, but they did, and they sting to this day.

Micah now has worked through most of his sensory issues, (he can wear helmets, tight jackets, no head banging, etc.) and if you were to observe him, you would say that besides not always understanding personal space and boundaries, he seems typical...and then...he'll talk. His speech is very, very delayed, making also his cognitive skills delayed.

Having my beautiful son has made me come to terms with many of my own issues: my temper, my judgemental attitudes, and my insecurities. I'm thankful for him. I am less likely to notice other children's behavior, and certainly not quick to judge other parents. I've learned that the last thing I ever want to do is use my children as a competitive tool, and I'm grateful for every milestone. Many days, I almost forget Micah isn't typical. And then, it will happen. A parent innocently bragging about something that their child did or said, a child performing on an instrument or singing a song. Children his age in sports. Little things like that.

Early on, I swore off playdates. At this time in my life, I wasn't surrounded by the best kind of friends. I was in a new state, and at the time, I didn't realize these women were just insecure themselves, I am very fortunate now to have a great circle. Complete trust with my child, and understanding. But as we look back now, our expectations of Micah were just too darn high, even for a typical child. We wanted him to be perfect in public. We wanted him always to be the bigger person in a situation with another child. No one could have lived up to our expectations, and I pray frequently that Micah has no recollection of just how hard on him we were. Fortunately, we wised up while he was still a toddler.

Micah is incredibly sensitive and sweet. And this makes it difficult when he's rejected by other children. Fortunately, we are blessed. The neighborhood kids here, are now, like family. This is a safe place, and everyday after school, you can catch us out in the tree house with about six boys in the yard, climbing trees, throwing sticks, and wrestling. The neighbor kids know that if they are coming to my house I'm going to let them wrestle. Micah needs that rough play, his sensory system almost begs for it.

I've still sworn off play dates, but fortunately for us, we are a playdate."

November's Plan...I want YOU!

Welcome to November! If you are still here, that means you are not tired of me yet....and that relieves my mind a bit!!

It also encourages me that my Big Plan for November may actually work!

I want to have as MANY of you on as possible!!! If you are AT ALL interested in a Guest Blogger spot, please contact me at underwater9800 at gmail dot com! I want this month's theme to be "Thankful That We Are Not Alone". So if this blog applies to you as a parent or sibling of someone with special needs or any kind of disabilities (including gifted as per my blog #18 Smarts) or you yourself struggled or continue to struggle with something or you love someone with something that gives you a unique perspective...I would like nothing better than to load this month up with a strong community resource! It does not have to be long or profound, you can recycle something that you have written before. You don't even need to have an "official" diagnosis, you can be in process of testing and determination, you can have a brand shiney new diagnosis, you can have one a million years old...anything is fair game. I am just wanting to open more doors to community and sharing.

Please add perspective. Share what you wish others knew about you or your child, share what you wish YOU had known, share what is in your mind and heart and find new friends!

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiastes 4:9-12

Come help some one up...