Social Stories

Recently, I wrote a very long post on Snugglebug's anxiety. We have started two things that I hope to impact his anxiety. Only time will tell if they work.

The first thing we started was the use of social stories. Social stories are short, descriptive stories with pictures to help the child visualize an event and explain what is going to happen. For Easter, I made a social story using scrapbook graphics. I love digital scrapbooking so I used the same concept for the social story.

We then read the story about hunting Easter eggs, what to do with the eggs, and what to do when we saw our friends. Snugglebug loved it and even asked me to read it after the egg hunt.

Once at the egg hunt, he was excited. There was no visit from the evil anxiety until the kids began to crowd into the starting area before the egg hunt. I could feel the tension increasing as the kids crowded around him and began invading his personal space (personal space is a whole other post). I whispered the words from the story in his ear, "We are happy to see our friends." He began to relax and seconds later the whistle signaling the craziness sounded. Snugglebug took his time gathering eggs and enjoyed every minute of the ten minute egg hunt. He walked away with a dozen and a half eggs. I walked away with a smile on my face. I don't know if we can attribute the social story to helping him to deal with his anxiety but it was enough that I am now making social stories for other upcoming events.

(For those interested in social stories, there are several websites that were very helpful. I'll post them at the end of this article.)

The second addition to our anxiety fighting battle is a visual scheduling system for each day and week. Using Picture Exhange Cards with velcro on the back, we attach the cards to a laminated piece of cardstock. We list the events of the next day with the PECS, and walk through those events the night before and again the next morning. We have just started this system so I hope it works as well as I have imagined.

We also have a laminated weekly calendar with the days of the week. We check off each day of the week and if there is a special event we mark it on the calendar so he can see it coming. He seems to like it.

I'll let you know if all this works to help curb his anxiety. I have no doubts that anxiety will still stage an unwarranted attack, but hopefully those attacks will be less in number.

Anxiety Attacks

Anxiety is a horrible and invisible enemy. It sneaks up on the victim when they least expect it. It's even worse when the victim is a child who can't comprehend or explain their feelings.

Along with 7q11.23 duplication comes a horrible level of anxiety. For some children, the anxiety is so high that it interferes with their social life and behavior, thus leading to past misdiagnosis of autism.

Snugglebug has this anxiety. On the scale of anxiety connected to 7q11.23 duplication, it is on the lesser end. But, on the scale of a nuero-typical three-year old, it is on the high end.

I cannot predict when the anxiety attacks will occur. I don't even know what to do when they do occur except reassure him that we will get through the situation together.

We had two incidents recently that seem to be similar in circumstance.

First, I took my train enthusiast to see Thomas the Train and ride a life-size train. Upon seeing the train, he squealed in delight and took off running toward the train. He was excited beyond belief. We arrived earlier than our boarding pass time so we had time to kill in the bounce house, etc. But, he wasn't interested! He only wanted to ride the train.

Finally, boarding time arrived, and we stood in line to board the train. But, as we approached the train's entrance, panic set in. I could feel him becoming tense but when the panic set in full force, he took off. He left my side and ran down the gang plank, away from me and the train. Fortunately, we were surrounded by understanding parents who cleared a path for me as I chased after him. I caught him pretty quick and hoisted his thrashing body up and back to our spot in line. The anxiety was just too much for him. When fight or flight overtook him, he chose flight.

Once on the train, he calmed down as I talked him through what was about to happen. He was still tense but seemed a little more composed. He made it through the train ride with flying colors. No more attempts at escape. He even climbed off the train by himself. I have no idea if he enjoyed the train ride. The downside of a non-verbal child is not knowing what they are feeling--Good or Bad.

The second incident was similar to the train. His little pre-school class took their first field trip. The eight students and two teachers were to ride the bus to the local library where they would read stories and sing songs. While we talked about it all weekend, the whole thing was new to Snugglebug and anxiety set in again.

The bus rolled up and the other students boarded gleefully, but Snugglebug had a complete meltdown. He was thrashing and crying. I carried him onto the bus and tried to talk to him, but he wasn't hearing me. I sat with him for a little while till he calmed down and was at least breathing again. I explained over and over again what needed to happen and that they were going to have a lot of fun. I finally slid him into the seat but he began crying once again. As I buckled his seat belt, he cried harder and louder. I fought back the tears that were forming and continued to reassure him.

His anxiety had not subsided when I left the bus and the teacher took my place next to him. I smiled and waved as the bus pulled out of the parking lot, but once it was out of site. I fell apart. Big, nasty, crocodile tears poured down my cheeks as I stood there all alone in the parking lot.

I prayed to God to look after my little boy and comfort him because I couldn't. Climbing into my car, I wiped the tears and cried some more. Moments later, I received a text from his teacher with a not-crying photo of Snugglebug. Before they were around the block, he had stopped crying and was enjoying the view from the bus window. I couldn't tell from the photo if he was happy or not, but at least I knew the anxiety had subsided enough that the tears had stopped.

I was extremely grateful to his teacher for letting me know that he was okay. Thoughtful teachers are a great gift to parents as well as students.

Upon returning from the library, Snugglebug had no issues boarding the bus and was excited to see it pull into the parking lot (all relayed to my by his teacher). Since then, he has asked about riding the bus almost everyday. We may actually consider the bus for summer school. It looks like this fear may be well conquered.

Meanwhile....Back in the airport

So, we are in the throngs of negotiating the waters surrounding the island known as the Preschool Program for Children with Disabilities. The very term makes me wince. I am not sure that I have really come to grips with the term "special needs" or disabilities. I'm thinking the entire thing needs a new name, like "Preschool Program for really adorable children with parent's stuck in an Amsterdam airport." Yes, it's long but makes a lot more sense.

I have spent days doing paperwork. For every question they asked, I attached a separate sheet explaining my answer. For every milestone listed, I checked "delayed." For every health problem listed, I checked "yes."

I attached 5 extra pages of data, not including more pages and a booklet on 7q11.23 duplication, and prayed someone would actually read all the data provided. (Thanks to my Dup Group buddies for helping with that!)

In the midst of doing the paperwork, I have returned to the airport and the aisle of grief. Once again I am mourning. Once again I am struggling with denial, struggling with change, struggling with wanting to have a "normal" life for my child all the while struggling with the need for professional intervention to get him where he needs to be for kindergarten. (The more I hear about kindergarten, the more worried I become.)

I was brought almost to tears one day as we played Legos in the floor for the very first time. We spent two hours building bridges, roads, and stairs for his animals and trains. I was brought to tears by the thought that our spare time was once again being whittled away. You see school won't be in place of therapy two days a week but in addition to therapy. Selfishly, I want a day each week that we can spend together as a family, and selfishly, I want a day each week where Snugglebug and I can crash, relax, and unwind. You do the math. There aren't that many days in the week or hours in the day.

I love our quiet down-times when we sit playing (a.k.a working on OT and speech homework). I have come to grips with so much of this adventure, yet just as I find bit of balance, a new ball is thrown into the mix, and I must find balance juggling even more than before. I can't even really put my emotions into words. I want things to stay the same, yet I want to embrace change. I want to accept once and for all that life for us is going to be full of challenges such as this, but it seems acceptance is outside my reach.

I'm peering at the daffodils outside the airport. I'm glad there are at least windows here, and I seem to have located a payphone to call friends and family for a shoulder to cry on and an ear to listen.

If you are clueless as to what I am referring to, I advise you to read: Amsterdam International.

The Quest for Encouragement: Are you in the airport or not?

A friend read Amsterdam International and asked what she could do or say to support and encourage those of us with neuro-atypical children (my word not hers, but about that in another post). I was so touched by her question. The simple desire to encourage me means more than any words she could ever utter.

Yet so often I don't even admit that I am in Amsterdam International, let alone admit that there are no windows to even view the tulips and windmills. When asked the age old question, "How are you?" I give the age old answer, "Fine." Besides, there is no way to answer that question when the airport feels like it is closing in on you.

So, using Dana's analogy of the airport and tulips, I have devised a coded question for friends and family to ask the parents of neuro-atypical children....

Are you in the airport or not?

You see some days you are in the airport. You might be near a window with at least a view of the tulips, but other days you might be smack-dab in the middle with no sight of an exit, a plane, or a tulip. All you see is the concession stand and its day-old sandwiches.

Then there are other days, when you escape the confines of the airport to see Amsterdam. You might not see the tulips, but you are at least breathing fresh air. But, other days, you might actually be seeing the tulips.

Each day is different. For those of us who have children with health problems, we cannot begin to explain those problems in the few minutes allowed for the "How are you answer?"

But, if we ask, "Are you in the airport or NOT?" A quick answer tells all and means the world to us moms. Just knowing that someone is interested...Just knowing that there is no judgment in how we truly feel, reminds us that even when we feel we are alone, we aren't. We have friends, who if they cannot even begin to understand what it is like to prep a two-year old for a colonoscopy, they can accept where we are and how we feel.

No matter the issue of the day or the view in Amsterdam, we just need a caring heart and sometimes someone to listen to us. We realize not everyone wants to know all the details. All we want to know is that someone cares enough to ask..."Are you in the airport or not?"

Quest for a New Word

With all due respect to those who believe there is no such thing as a normal child, I do believe there is a "normal." AND that my Snugglebug does not fit in that category.

A normal child goes to the park, Snugglebug goes to Specialists (6 to be exact).
A normal child goes on playdates, Snugglebug goes to therapy (3 hours a week to be exact).

A normal child does not have to be prodded to move forward in development. It just happens.

So, while the word normal is not the best word to use, I am at a loss for what to use to describe our situation. A Dup Group parent suggested the terms neuro-typical and neuro-atypical to describe their two different developing children, one of whom has 7q11.23 duplication and one who does not. I like the terms. They seem to fit the definition.

So, until I find a better way to describe sweet babies who need extra love, extra help, and extra supervision, I'll be using neur-atypical.

I'm open for suggestions.

Amsterdam International

The article below was written by Dana Nieder, the mother of a special needs child. This article speaks to every crevice of my heart. It is hard to explain what it is like to be a parent on this journey of life with a neuro-atypical child, but she does.

The poem below, Welcome to Holland, is written by Emily Perl Kingsley, a writer for Sesame Street and the mother of a child with Down Syndrome.

Dana uses the poem as a basis for her article, which is why I included Welcome to Holland here. Dana includes a link to the poem in her article.

I would love to hear comments from you, my readers.



--------

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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

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

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

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

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

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

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

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

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

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

-----------

Amsterdam International
Written by Dana Nieder

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

Please feel free to forward this, blog about it, post it places, etc. My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone. If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out.

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :)

Thanks for reading :)
Posted by Dana at 10/05/2010 10:05:00 PM

7q11.23 Duplication: A Mom's View

My sweet Snugglebug has been babbling away and is now starting to say little words like "Hi" and "Bye." It is very quiet, almost a whisper and either before the person is in view or after they have left. It's hard to explain the excitement of a whispered "bye". It is hard to explain anything regarding my child. On the outside, he looks perfectly fine. Many just assume he is quiet or extremely shy. He really isn't either. I just nod and agree because there is no way to explain it.

I'll never forget one day in the grocery store; someone else's kids were running a muck through the store, screaming, yelling, etc. Snugglebug sat quietly in the cart, helping as he always does. A very nice senior lady approached us and said, "I'm glad your child isn't like those others." I just answered simply, "thank you."

But, I digress. Life with a child with a rare genetic syndrome is interesting. Everything you had planned before the baby was born is completely negated. The adventures to the zoo, the friends in mom's groups, the swim lessons, and yes, the Spanish lessons. I'm an ultra-planner and had it all planned out.

Now, we are approaching three-years old and having to consider pre-school, which oddly enough was the original plan. But, there is a difference when you are home everyday and considering two-day a week pre-school. You're ready to get rid of them for a few hours a week. We are already on the road at least two-days a week and turning loose of him for two more is a daunting thought. We have so little time to be mom-and-son on an adventure called childhood. Our childhood adventure has been shortened by two years because of his genetic disorder and the delays that go with it. While he is progressing, he has a long way to go before he is ready for kindergarten.

Another Dup Group (our support group for 7q11.23 duplication) mom said it best when she said that our kids just need more education than the average child. We have to think about schools earlier and have to think about summer schools when they are older.

It is impossible to explain the emotions connected to sending him to pre-school. They are confusing even to me and I'm the one feeling them. I want my little boy to have a great educational experience which means giving him the head start that he needs, but selfishly I want to experience all those mommy-adventures with him and there are so many we haven't had yet.

When I voice my feelings, I am always reminded by the listener that it could be worse. I realize that and don't forget that I am blessed to have a child as healthy as he is, but it does not negate the emotions that I feel.

I cannot express the emotions when he speaks a word; I cannot express the emotions when we have to skip a playdate because of therapy or a doctor's appointment; I cannot express the emotions of sending my child to school at three when he shouldn't be leaving the house till he is five; I cannot express the emotions when I realize that his annual expenses are the equivalent to my sister's three kids all total.

So many emotions from a mom with one child; All of them churned up by the thought of sending him to preschool. We are off to therapy in a few minutes and during those two hours of therapy and the hour and a half round trip to and from, I'll try to squelch the emotions because one cannot function with such emotions. One must push them aside and focus on the moment at hand.

For me two-years, one month, and two weeks seems just like that. It hasn't flown by. To live in the moment is the only way to savor each moment, no matter how few they may be. They don't grow up near as fast as you think they do when you are experiencing every single moment. Yet, it is still never enough.

Of Papas and BowBays

The most frustrating thing about 7q11 duplication is the inability of a child with a brilliant mind to share his or her brilliant thoughts. I often look at my 2 1/2 year old and wonder what is going through his head. What would he say if he could make his mouth make sounds? What questions would he ask? What words or phrases would he repeat without ceasing? The understanding and comprehension is there. I can see such comprehension on his face and through his actions. I recognized that a year ago when we began speech therapy with our wonderful speech and language pathologist.

We began therapy a year ago almost to the day. A year ago at 1 1/2 years of age, Snugglebug barely made a sound. It was rare to hear anything at all from him, let alone speech appropriating sounds. We began with sign language, and now, he has a vocabulary over 100 words. We celebrated each word as that was a step toward communication. Then grunts showed up and the occasional repetitive sound. More sounds crept into his repertoire, but nothing significant and yet all building blocks.

In August, we took a vacation and a week and a half break from speech therapy. The second session after our break, he officially crossed over from single sound repetition into multi-sound babbling. The therapist and I were overjoyed, cheering, and encouraging more sounds from him.

A week after that Gabriel said his first official word. PAPA...He was visiting his grandparents, my husband's parents, and called out to Papa in the other room. "Papa, Papa" he shouted loud and clear till his grandfather answered him. Yes, it's official! We have a word!

Then this weekend on Labor Day, while visiting with my family, Snugglebug, who adores his newest cousin, announced the 6 month old, "BowBay" he shouted while also signing "Baby." If he hadn't also been signing, I don't think I would have realized he was speaking his version of the word Baby. Yes, we have another word! BowBay for baby! Again I was rejoicing and jumping up and down and telling him what a wonderful word it was.

So, in one year of speech therapy, we have two words and over 100 signs. If another year of speech therapy gives us 100 spoken words, I will be the happiest mom on the planet!

Quest for Acceptance: We are Flawed!

We are flawed! While that doesn't seem like a revelation, it really is. Stop and think about it. How many times have we been disapointed in ourselves for not succeeding or for something not being perfect or perhaps for not doing as good a job as someone else? How many times have we judged others for not doing a good job at something? We gauge ourselves on a standard that would require perfection to achieve and that is just not possible.

While cleaning out my closets, I discovered just how much of a perfectionist I am. I have dozens of projects half-finished because they were too flawed for me to even spend the time finishing them. I would toss it aside with the others in hopes of correcting the flaws at a later date or even starting over and making the next project flawless. Thus my flaw is my perfectionism.

But, my desire for perfection doesn't stop with craft projects but extends to motherhood. I expected so much of myself before becoming a mother. I had a long list of things I was going to do and a tall pile of books to teach me how to do them. None of those ideas worked, and no amount of books would provide me with a child who slept or who would stop crying from the pain of acid reflux.

My quest to be the perfect mom was flawed from the beginning, and it just went downhill from there. My other pre-baby idea was that all babies were born perfect. That's what we always hear. "He's perfect. Ten toes, ten fingers." "She's perfect and beautiful." My baby had a swollen eye that was completely closed. He was slightly jaundiced and not perfect.

But, before you chastise, acceptance begins with the realization that we are not perfect, not even as infants. We are not perfect physically or spiritually. We are born with the blood of our fathers polluted with the sins of Adam and Eve. Our bodies are just as flawed. If we weren't flawed, we certainly wouldn't need the Grace of our Lord Jesus Christ or the help of a gracious God.

In my pursuit of perfection, I certainly would not have found any need to call on God for help if I had had a perfectly healthy child, who slept through the night, and did not have acid reflux. I certainly would not have called on God for provision if we had not found ourselves in a situation in which we could not provide for our son and his medical needs.

I've received some backlash for focusing on my son's health issues and speech delays, but in truth, I am realizing that by focusing on his imperfections, I am seeing God working in miraculous ways. By accepting that life is not perfect, that my son is not perfect, that I am not perfect, and that our situation is not perfect, I am admitting that our life is a perfect place for God to show his handiwork.

Thus, I am, as a non-professional, suggesting that the first step to acceptance is accepting that we are all flawed, physically and spiritually, and that we need a God that is greater than our flaws and more gracious than we deserve. But, most importantly, because of our flaws and imperfections, we must rely on God to get us through, to provide for us, and to give us the strength in the tough times.

The Quest for Acceptance: Permission Granted

I grieve, and I pray. I grieve because while most parents make playdates, we make doctor's appointments; while most kids play at the park, we are at therapy. And I pray that one day my child will be normal, that he will grow out of his problems, that nurture can overcome the horrible genetic hand that nature dealt to us.

No one tells you that you can grieve over something other than death. No one tells you that you can grieve over the loss of a job or loss of health. No one tells you it is okay to feel the deep sense of loss when a dream never comes to fruition, whether that dream be motherhood or something else entirely. Some people have told me that it can always be worse, and I should be thankful. Grieving does not mean one is not thankful; it merely means one is forced to accept what was not originally planned.

So for the first year of my son's life, I was in denial. I accepted that things were just outside of normal. Then he was diagnosed at 14 months of age, and I moved to anger, bargaining, depression, and back again to anger overlapped by bargaining and depression.

Today, I sit at the precipice of acceptance. I say that only because I give myself permission to grieve. There are days that I am angry...angry with God...angry with myself...angry with people around me. There are days that depression overwhelms me, and I feel darkness closing in once again. But, through all the tears acceptance is near and acceptance is the quest. What does acceptance look like? I don't really know. What does acceptance feel like? I don't know that either. What lies beyond grief? I don't know that either. But, I give myself permission to grieve, so that I may see what is beyond grief. I give myself permission to ACCEPT!

Let Us Now Speak Russian!

Imagine a doctor, other than your pediatrician, telling you that even though you are English speaking, living in an English speaking country, and are surrounded by English speakers that your child's native language is Russian. Of course, the first thought going through your mind as a parent will be, "that's impossible." But the doctor reiterates that if you want your child to speak, you must teach your child Russian. Sounds impossible and ridiculous, doesn't it? But that is exactly what has been going through our minds, mine and my husbands.

While my son is hearing, with only a small hearing impairment, which is correctable with pe tubes, he most likely will need sign language to communicate. See the duplication of 7q11.23 effects the part of the brain that forms speech. And even though Snugglebug can understand everything I say, the words just aren't there for him to communicate. The frustration is obvious on both ends, his and mine. The desire to communicate his needs is frustrating and my desire to understand him is heart wrenching.

So, each day, a dozen or more times, I refer to a sign language manual my sister gave me and an online sign language dictionary. (An aside: My sister is a sign language interpreter, and I believe God gave her that gift so she could bless me in helping me to communicate with my son. God works in awesome ways!) I look up words that we use over and over again such as bird, dog, cat, pear, apple, etc. It would be fine if I only had to remember four or five words in sign language, but an entire dictionary! It's daunting. Two hours later, I have forgotten the sign I looked up earlier and have to check it again. Because not only do you want your child to speak Russian, you want your child to speak it properly, and not like a backwoods hillbilly that no one can understand.

So, I race to look up the word for bird once again and by the time I find it, the hummingbird has left the feeder and Snugglebug is on to something else. I look up that word, too. As I sign the words to Snugglebug, I pray that eventually his speech abilities will kick in. Some studies have shown that adults with the same genetic syndrome have little or no speech problems. The question would be: Are they on the least end of the spectrum or the worst end? Did they "grow out of" their speech problems or were they less in the beginning?

Nevertheless, learning and teaching an entirely new language is daunting. Snugglebug is 17 months, and we have decided we need professional help learning sign language and teaching it to Snugglebug. So, it is time to enlist a speech therapist. The problem is that our pediatrician disagrees, or I should say her staff refused to allow me to pass on my request. The nurse turned me down flat and said I would have to make an appointment if I wanted a script for speech. I guess she is afraid I will give him speech when he doesn't need it and make him immune to speech down the road. Or perhaps the nurse was worried about me marketing the scipt on the street. I hear scripts for speech evaluations go for high dollar! And there is no doubting that some people get a thrill from the spoken word. I would hate to see a speech therapy session fall into their hands or mouths. Or perhaps, she interpreted my request to be a desire to have the youngest person ever in Toastmasters.

Whatever the nurse's reason, and I tried to reason with her, she insisted we needed an appointment before we could even consider speech therapy. Honestly, you would think I had told her I wanted to teach him Russian!

Busy Month

I just realized it has been almost an entire month since my last posting but what a busy month it has been. We have had 4 doctor's appointments, 2 therapy appointments, 1 birthday party, 1 family reunion/camping trip, 1 baby shower, and now we are on vacation.

July will be just as busy as June. It never really seems to slow down. I always think that once summer gets here things will slow down but they never do. This summer is even busier than the ones before since we have added so many doctors appointments and now physical therapy. I have decided that one child with special needs is the equivalent to four or five healthy ones. While healthy children go to the doctor with an ear ache or the flu, we go for hearing issues, growth issues, and digestive issues. I am incredibly thankful that Snugglebug has been healthy in all other ways. To add the flu or chronic ear infections to the already extensive list would be too much to handle.

I am learning more and more about 7q11.23 duplication syndrome. I am learning that most of Snugglebug's health issues are related to that duplicated gene. I also am finding myself amazed at the intricacies of genetics...that just one duplicated gene can wreak havoc on the system in so many ways is amazing. Granted, Snugglebug has more than one gene duplicated in that region but it all ties in together. Makes a person wonder how anyone could ever believe in evolution.

So much more research needs to be done on 7q11.23 duplication so that parents like me can have a better understanding of what life will entail. I pray for those scientists everyday that they will have a growing passion to seek out answers for the rest of us.

Tying the Pieces Together, Part 2

Sweet relief. Sweet relief is what I feel today after our highly anticipated meeting with our geneticist. But, before I explain how all the pieces of the puzzle finally fit together, allow me a moment to express my gratitude to a very down-to-earth doctor and scientist, Dr. Angela Scheuerle, MD, FAAP, FACMG. Dr. Scheuerle took great time in understanding us, as a family, and our medical history. Talking with her was like talking to a friend. During our meeting today, she explained everything on a level that we, non-scientists, could understand.

She explained that we should have two of each chromosome and that a deletion or duplication (addition) is what causes genetic syndromes ranging from Williams Syndrome (caused by a deletion) to Downs Syndrome (caused by an addition to Chromosome 21).

Our son has a duplication of a gene. This gene is known as 7q11.23 duplication. This duplication was first discovered in 2005, thus not a lot is known about the problems occurring with this type of genetic syndrome.

We do know delayed speech, delayed motor skills, and slowed growth are all connected to 7q11.23 duplication. It has also been documented that autism or other type social anxieties as well as various learning disabilities have accompanied some with the gene, but others have no problems socially or educationally. The issues with social interaction and learning dissabilities seem to span the spectrum of severe to non-existent.

Dr. Scheuerle explained that there are many people walking around with the genetic duplication but show no symptoms whatsoever. This is very positive for us. Even though we have a 14-month old who is not talking and not walking, it does not mean we will be dealing with serious issues the rest of his life. It does however serve as a road map for us, telling us what may be ahead of us. In which case, we can be better prepared.

While constipation, a serious problem for Snugglebug, is not considered to be a symptom of this syndrom, Dr. Scheuerle surmised that it could also be related. This is the final piece of the puzzle. She explained when you have a vast array of issues that seem to be unrelated, they are typically related to a genetic syndrome from either a deletion or duplication of a gene.

Currently, Snugglebug is receiving physical therapy, and we hope to begin speech therapy soon. He is already progressing in his motor skills which thrills me. I've never been one of those moms who wanted their baby to stay a baby. I couldn't wait for him to walk, and I still can't. I can't wait for him to talk either. I can't wait to hear what his little mind is thinking about! I can't wait to have a conversation with him. All these things are going to come in time. I must hold steadfast to the fact that God is a gracious God, and that He will see us through.

I'm encouraged by all we have been through in the last few months and even more encouraged by what we learned today. The pieces of the puzzle have been tied together and presented with a solution.

Tying the Pieces Together, Part 1

This is day 2 of a very long week which followed another very long week in a very busy month. We have been taking Snugglebug to specialists of all sorts. If we haven't been to see a particular type of specialist, it has been recommended. We have also been drawing blood for different tests all in hopes of tying all the odd pieces together.

I have mentioned Snugglebug's battle with constipation, but he is also very small for his age. He is in the 1 percentile. We have a friend who's 6 month old is the same length as 14-month Snugglebug. He has delayed motor skills and delayed speech. In both areas, he is around average for a 9 month old.

We began physical therapy with him last week in hopes of getting our 14 month old mobile, and we are looking into speech therapy. After much discussion with our pediatrician, we decided to try to pull all the pieces of the puzzle together, and she started booking specialist appointments for us.

One of the specialists was a geneticist. She called yesterday and said she had found something. She asked that my husband and I come in to see her without Snugglebug in tow so we could discuss the results at length.

Our minds are racing with the possibilities. The fears that lie with a genetic disorder are huge! My husband and I spent a great deal of time on the phone last night discussing what it could mean for us and for our little guy.

Thursday, we see the Geneticist and will learn what is in store for us. We still have a gastroenterologist and possibly an Endocrinologist to see. So we may unearth even more causes for his various symptoms.