Back to Reality-Then, Back to School

It has been almost 3 weeks since I returned from my first segment of training for the Anat Baniel Method. I must admit, it was hard to jump back into the daily grind after being away for 10 days. We had class every day, so it was easy to forget what day of the week it was and the weather was beautiful.

When I returned, it was time to get back to the reality of housework, preschool and therapy appointments. Both boys had Easter parties that week and Corbin's spring break started just 4 days after I got home, so I definitely didn't get to do as much "homework" as I would have liked to right away. We are supposed to do movement lessons as part of our homework, which require you to lie on the floor and do a variety of slow movements. They are most effective with few distractions, so that you can really pay attention to how you are moving and how your body feels. However, having a 5 1/2 year old run circles around you, while a 3 1/2 year old is either grabbing your hand or climbing on you, is not exactly the ideal scenario. Next week we will all "go back to school" and I'm definitely ready to start my first online segment with fewer "distractions".

My first training segment was awesome and I met many amazing people. One of my favorite parts was hearing all of the stories from my fellow classmates about how they found ABM or how their children have been transformed by ABM. I've obviously seen big changes in Emmett too or I wouldn't be in the training. After doing several movement lessons myself, I have an even better understanding of how powerful this work can be.

Although I am just "a baby" in the ABM profession, I am already learning how to help others- one baby step at a time. I've even started practicing the few things that I have learned on family and friends. It will be a while before I fully understand what I am doing, but I guess that is how it is anytime you try something new.

Even though I was a little nervous to start this new adventure, I'm happy to say that it has been incredible, so far, and I know that it is only going to get better, especially when I can help Emmett in a way I never have before.

The Final Countdown

It's hard to believe that in just over a week, I will begin my journey to become an Anat Baniel Method practitioner. I'm very excited, but I feel like I have a million things to do!

There are a lot of logistics to work out with two different preschool schedules, therapy appointments, and my husband's work schedule, but thankfully, we have family and friends that are willing to help. I will be out-of-state for ten days, which is a pretty big deal, when you're the primary caregiver, cook, and taxi driver.

I have completed the master calendar and am working on several pages of instructions, tips, and phone numbers for the variety of people who will be helping. I have stocked up on Emmett's favorite foods and the diaper supply is secure.

I didn't think much about Emmett's daily routine, until I started typing everything out. There are a lot of little details that are just everyday life for us. His medical needs are relatively minimal, so he doesn't require a nurse to take care of him, but he does have a somewhat limited diet and we have to thicken his drinks, so he doesn't aspirate. It isn't rocket science, but it is important for everyone else to know, especially since he is nonverbal and can't easily communicate. There are also the little things, like what to pack for school, when the boys have a snack, and where to find the band aids! I know that the world will not come to an end if Emmett doesn't wear green on St. Patrick's Day or if Corbin forgets to do his homework, but I just want everything to run as smoothly as possible.

This is the longest that I have ever been away and it will definitely be a challenge for everyone, but I know that my boys will be in good hands and that it will be totally worth it.

I may not have prepared the make ahead slow cooker meals that I had intended to, but my husband is an excellent cook, so I know that my family won't starve. I didn't even plan the boys' outfits for the week, but I'm pretty sure that they won't go to school naked! Will everything be exactly how I would have done it? Of course not, but as long as my boys are happy and safe, that's all that really matters.

Even though I know that I will miss my family, I must admit that I am looking forward to waking up to an alarm and not the sound of a screaming child. And being able to go to the bathroom without having an escort will be a luxury. However, what I am looking forward to the most is learning how I can help Emmett and many others, through the Anat Baniel Method. This is going to be an amazing adventure and I can't wait to share it with everyone.

 I'm sure going to miss these little guys and their daddy too!

God's Perfect Plan

I really enjoy reading blogs, especially those about children with special needs. A few weeks ago I read a blog that was titled: Bible Verses for Special Needs Moms. I could really relate to what was being said and one of the verses even hangs on Emmett's bedroom wall. 

One verse that the blogger mentioned was one that I had read before, but had never really thought much about. The Bible is cool that way, you never know what verse will stand out on any given day.

This is the verse:

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

- John 9:1-3

Although we are all sinners, Emmett's syndrome is not a punishment for something we did, as his parents. He was created that way by God and I see the glory of God's creation in Emmett everyday. In the chapter mentioned above, Jesus went on to heal the blind man to display the works of God, but not every person that is sick or impaired will be healed.

Even if Emmett is never "healed", there are many other ways that the works of God can be displayed in him or through him. When I read John 9:1-3, it made me think of all the ways that Emmett has already blessed so many people, just by being himself. It also made me think of how having Emmett has given us the opportunity to help other people. Whether it be by giving advice to other parents in a similar situation or by helping other children when I start my new career, many good things can happen as a result of God's perfect plan.

Even though we are only three and a half years into this journey, I am beginning to understand why God gave us this amazing boy and I am so thankful He did.

Rare, but Not Alone

It has been just over a year since we received Emmett's diagnosis. When we first heard of Xia-Gibbs Syndrome, there were only 4 other known cases in the world and very little information about it. I would find myself googling it every couple of weeks, in hopes of finding just one other family who could relate. About three months later, I received an email from a mother of another child with Xia-Gibbs Syndrome from halfway around the world. I was so excited! We quickly exchanged emails about our children and learned that they were very similar, not only in their delays and medical background, but also in personality and appearance. A few days later, I received another email from a family here in the U.S. This trend continued and over the past 10 months, we have been connected with 13 other families from all over the U.S. and Europe. The children range in age from 2 to 18 years old. I have never met a single one of them, but I am so thankful that we have found each other.

Our intimate, little group shares the good times and the bad. We ask each other questions and give advice. Even though we still have a lot of questions about the future of our children, it is nice to know that we are not alone in this journey.

Although I have connected with many people who have children with special needs and can relate to them in many ways, I felt such a sense of relief when I started to connect with other "Xia-Gibbs families". All of the children have a variety of medical concerns, some of which may not be related to Xia-Gibbs Syndrome, but it has been interesting to compare similarities.
I want to respect the privacy of all of them, so I won't go into great detail, but I will share a few general observations:

• Xia-Gibbs Syndrome causes hypotonia (low muscle tone) and developmental delays. Low muscle tone can affect fine and gross motor skills, speech development, eating, and breathing!

• Most of the children have or have had obstructive sleep apnea.

• Many of them have feeding issues of some kind. They have difficulty eating tough meats and hard fruits and vegetables. However, most of them love food, despite their limitations, and tend to stuff too much in their mouths. Some of them choke on thin liquids and must drink thickened drinks.

• Some are talking, some are not. The ones who are talking have difficulty with expressive language. Most of the children tend to get frustrated when trying to communicate, whether they can talk or not.

• Most of the children love music and are sensory seeking. They like tight hugs, being in water, feeling different textures, and tearing paper.

• Perhaps the most interesting thing that these beautiful children have in common is their love for people. They don't know a stranger and they love being close to others. Many of them hate to be left alone in a room.

These are simply observations that I have made and by no means am I claiming that they are medical fact. I am sure that as more and more children are diagnosed, we will continue to learn more about Xia-Gibbs Syndrome. The challenges we face can be difficult, but it is nice knowing that we are not alone. I hope to eventually meet these families face-to-face, but in the meantime, I am thankful that we are able to connect through modern technology. 

A Whole New World

If any of you follow Emmett's page on Facebook, you have probably seen a few videos of him walking. Every time I post one, I am amazed at how much he has improved in such a short period of time. His little Frankenstein walk is becoming more natural and relaxed every day. He has mastered turning in all directions and his balance has improved. He is beginning to navigate around obstacles and transitions well between different floor surfaces. He even claps his hands while he walks sometimes. He still falls pretty easily, but he is doing great!

When we are home, he spends much of his time just walking around, exploring the house. He knows when someone leaves the room and will quickly follow after them. What used to take him several minutes, only takes him a matter of seconds now. If one of us "escapes" to the bathroom, it isn't long before we hear his rhythmic, two-handed drumming on the door.

I think the best part about Emmett walking better is that he is becoming more interested in everything around him. He's trying to turn door knobs and he is just tall enough to reach things on the kitchen counter and table. I have caught him snatching food off of his brother's plate and have even saved a few dishes before they hit the floor, but I don't mind a bit!

Just last week, we visited the children's museum and it was the first time I really felt like he did more than just watch the other kids. He was able to walk around a little and check things out on his own. He especially enjoyed pounding on the drums and feeling the sand on the spinning turntables. I have to watch him carefully when we go out in public because he doesn't really understand the concept of strangers or personal space, but it is fun watching him as he discovers and explores new territory. I can tell that he is enjoying it too because he has a little smirk on his face that says, "Hey, I'm walking all by myself!"

Keep it up, little man. You'll be running before we know it!

Choosing Thankfulness

Sometimes having a child with special needs can make day-to-day life a bit overwhelming. However, with Thanksgiving just around the corner, I thought it would be nice to focus on the things that I am thankful for:

• Instead of being sad that Emmett can't do what other kids do, I am thankful for everything he CAN DO.

• Instead of being disappointed that he is still very much like a one-year-old, I am thankful that I get to ENJOY THE BABY PHASE LONGER!

•  Even though Emmett wakes up by 5:30am almost every morning, I am thankful that HE SLEEPS THROUGH THE NIGHT.

• Although having several therapy appointments every week can be exhausting, I am thankful that HE HAS HEALTH INSURANCE, which makes these appointments possible.

• Instead of thinking that my older son is missing out on a "normal" childhood, I am thankful that having Emmett as his brother will make him A MORE COMPASSIONATE PERSON.

• Even though Emmett can't tell me with words, I am thankful that he has A BEAUTIFUL SMILE AND AN AMAZING LAUGH that tell me that he's happy.

• Even though it took him over three years to learn how to walk, I am thankful for EVERY BEAUTIFUL STEP.

• Even though Emmett often cries when we leave the room, I am thankful that HE LOVES TO BE CLOSE TO US AND GIVES GREAT HUGS.

• Instead of being bitter that I have a child with special needs, I am thankful for ALL OF THE AMAZING PEOPLE that we have connected with because of his special needs.

• Even though our days can be challenging, I am thankful that GOD CHOSE US to be Emmett's parents.

• Even though he may not be like other children, I am thankful that EMMETT IS FEARFULLY AND WONDERFULLY MADE, just the way God intended.

School Days

I wasn't quite sure what to expect when Emmett started preschool. For the first few days, I almost forgot that he wasn't home with me. I halfway expected to feel him pull at my leg or to hear him crying for me in the next room. I've been without him before, but I'm rarely home, when he isn't. It definitely took some getting used to.
Thankfully, Emmett is adjusting well to school and likes being there. His teacher writes little notes to let me know what he has been doing and she sends home a daily behavior sheet. He has gotten a "green light" every day, but that is no surprise because he is normally a happy boy, as long as he has food in his tummy and a grown-up friend nearby. His big brother, Corbin, even gets to be a peer student in Emmett's class once a week. Even though Emmett's teacher keeps us informed, it is nice when Corbin can tell me about their day.
Emmett receives PT, OT, and speech therapy at school. He rides the bus and is home before noon every day. When I first learned that he could ride the bus, it sounded a little strange, but with two different preschool schedules in two different towns, it has worked out well.
So, you may be wondering what I do with all of my "spare time", now that Emmett is in preschool. One thing I get to do is spend extra time with Corbin, which has been good for both of us. He even works out with me sometimes. I'm not sure which is funnier, me trying to do Zumba or Corbin trying to follow along! 
The rest of my time is spent doing household chores, making phone calls, doing research online, and taking Corbin to preschool. I have also been able to tackle a few deep cleaning projects, but my personal favorite is running errands ALL BY MYSELF! It's amazing how many stores I can run in and out of, when I'm not buckling and unbuckling car seats at every stop.
Although it's still a little strange not having Emmett with me all of the time, it has been a good change for all of us. He's learning how to do things without me by his side and I'm learning that it's okay to let someone else take care of him for a while.

The chalkboard should say, "I'm going to be EVEN MORE AWESOME!"

Corbin's first day going to school with Emmett.