The Friends I Have Never Met

The world is a very different place, than it was when I was young. Sometimes it is hard to remember what it was like before the internet. It was a simpler time and I do miss it sometimes, but then I think about how different our journey would have been without modern technology. The countless hours I have spent researching Emmett's symptoms, new therapies, and doctors, would have literally taken me years to navigate, without the internet. I never would have heard of some of the best treatments out there and I don't even want to think about how many times I would have gotten lost on my way to one of Emmett's appointments, without navigation on my phone.
One other thing that would have been profoundly different, without modern technology, is my network of friends. I am blessed to say that I have an amazing support system of family and friends who love Emmett unconditionally, but I also have a whole other network of "friends" that I have never met. These are the families that I have connected with through online support groups, that never would have existed without the internet. These are people from all over the world who are on a similar journey. Some of them have children with only a few similarities to Emmett, while others have the same diagnosis.
Even though we have amazing family and friends, having a child with special needs can still be lonely at times. However, being able to connect with other families, who face similar challenges, has made this journey a lot less lonely. These groups have been a great place to vent, share ideas, ask for advice, and share exciting progress. The past few months have been especially exciting because we are beginning to connect with other families that have children diagnosed with Xia-Gibbs Syndrome. When we were given the diagnosis in November, we were told that there were only four other known cases. We don't know much about the syndrome yet, but it has been interesting to compare notes and see how similar our children truly are.
I may never meet a lot of the people that I have been in contact with and I may not even know much about them, but I do know that having them to relate to has been a lifeline for me. The internet can be a dangerous place, but it can also be a great resource to connect with people in a positive way, to encourage them, give them advice, and let them know that they are not alone. So, thank you to all of the friends I have never met. It is good to know that I am not alone in this journey and I hope that I have been able to help some of you, like you have helped me.

How God Prepared Us for Emmett

When I used to think about getting married and having children, I never really considered the possibility of having a child with special needs. While I was pregnant, we never considered doing any extensive tests to determine if our unborn child would be born with anything out of the ordinary. We weren't oblivious to the possibility, it just didn't matter. No matter what child God gave us, it wouldn't change how much we loved it, so we chose not to do any testing. Standard prenatal screenings wouldn't have detected Emmett's syndrome anyway. A few months ago, I started thinking about how God prepared us for Emmett. The more I thought about it, the more I realized He had been preparing us for most of our lives.

Although my husband, Seth, and I had never met anyone with Xia-Gibbs Syndrome before Emmett's diagnosis, we did intimately know people who faced challenges in life and we loved them unconditionally. My first experience with someone who had a physical impairment was with my dad. He was severely injured in an accident as a toddler, which left him with only two fingers and a thumb. Although he may have looked strange to others, he was just my dad and he learned how to do just about anything, with very few limitations. I think that by seeing what my dad had overcome, it helped me realize that you shouldn't put limitations on people, regardless of their disability or diagnosis.

When I met Seth, I quickly learned that he had a twin brother, Nathan. He was mentally impaired and epileptic, as the result of a childhood illness. Although Nathan had his challenges, his family treated him as an equal and had high expectations of him. He was a hard worker and had a child-like spirit that could always brighten your day. I only knew Nathan for a short time before he passed away, but I am thankful that I got to know him and it gives me hope that Emmett will be happy and accomplish many things, even if it isn't what others perceive as normal. I truly believe that having Nathan as a part of the family, helped prepare us for Emmett.
I'm sure that my dad sometimes wondered why he had to lose his fingers and I know that Seth has wondered why his brother had to get sick. No one truly knows why these things happen, but I do know that these circumstances did help prepare us for our journey with Emmett.

I also often wonder why Emmett has Xia-Gibbs Syndrome, but I can't help but think that what we are going through now will help someone else along the way.

Mr. Mischief

I first suspected that something was "off" with Emmett very early on. I remember telling my close friends that I was concerned because he didn't smile much and was not easily amused by things that most babies would love. It was too early to pinpoint developmental delays and many people said that he was just taking everything in and that he would be fine.
When he was diagnosed with low muscle tone, I began to understand why he was "the observer" and seemed more serious. As he became stronger and was able to do more, his personality began to come out more and more. It has been a slow process, but he is really starting to show his mischievous side.
A few weeks ago, we were playing outside and he had mittens on his hands. He loves chewing on things and managed to pull one of his mittens off with his teeth. Well, a few minutes later, he managed to pull the other one off, the same way. These are the pictures that I took and I think that it is very clear that he knew exactly what he did and that he is very proud of himself.

He isn't saying any words yet, but he will mimic kissing, laughing, and even coughing. He loves copying these sounds and loves to see our response when he does it.
He has great facial expressions and will look off to the side or flash a mischievous grin, when he is up to something or doesn't want to do something. He will also scrunch up his face in disgust or make an awful, throaty sound when he gets upset or mad.
These may seem like little things, but it shows me that he understands far more than he can express and that he is learning to communicate, even if it is only with a silly face, grin, or giggle. I love watching his personality unfold and look forward to seeing him get into more mischief. After all, that's what little boys are supposed to do!

Toddler proofing and loving it!

I know that many parents dread the phase when their child starts getting into things, but as a mom who waited almost 2 and a half years for her son to crawl, I say, "bring it on!" For many, many months, I watched Emmett pretty much stay in the same general area. It took him a little longer than most, but he did learn to roll, pivot in a circle, and eventually, scoot backwards on his tummy.
I still remember the day that he backed himself up under our couch, but couldn't figure out how to move forward. Of course, I helped him out, but not until after I took a quick picture on my phone. I know that most parents are proud of their children when they do something new, but I never imagined that watching my child get stuck under our couch would be something that I would celebrate!

Now that Emmett can crawl FORWARD, pull to stand, and cruise, I have to be much more careful about where I put him and what things are in his reach. However, I am not complaining... I am loving every minute of it.
Emmett had shown so little interest in moving for so long and now it is like he is seeing the world for the first time. The other day, I left the room for a minute and came back to find Emmett eating a piece Corbin's cinnamon toast. He wasn't simply eating it. He was shoving it in his mouth with both hands, as if he hadn't eaten in days. It was almost as if he knew that he only had a few seconds before either Corbin or Mommy caught him in the act.
I've also had to fish dog food out of his mouth and change his clothes after he put his hands in the dog's water dish. And I'm quite sure that we will have to start closing the door, when he discovers the even bigger "water dish" we have in the bathroom. It may be a slight inconvenience, but I can't help but be happy to see him acting like a typical toddler.
Of course, I do also worry about his safety. He loves to cruise around things and doesn't really know the difference between the couch and the rolling office chair. All he sees is something to pull up on, which isn't always in his best interest. He also likes to cruise along walls, which is fine, except he hasn't quite mastered how to get down safely. Needless to say, if he cruises into our kitchen with the hard tile floor, we definitely have to watch him more closely.
I guess the point that I am trying to make is that having Emmett has made me appreciate all of the stages of development more. We may have our television surrounded by a safety gate and have a few more messes to clean up, but I don't mind at all. Our little man is doing new things and that makes me one happy mommy!

What's in a name?

It took me a few weeks to decide on a name for my blog. I wanted something simple, but also something that meant a little bit more. While I was brainstorming, I kept coming back to how loving Emmett is and how he gives great hugs. He loves people and doesn't know a stranger. Every time we see a new doctor or specialist, he willingly goes to them and will often times lay his sweet, little head on their shoulder.

He is the same way with his therapists. It is not uncommon for him to do a few repetitions of a therapy activity and then, lean in for a big hug. We joke that he is trying to get out of work, but I know that he truly needs that physical connection. No matter where we go, Emmett is looking for someone to cuddle.
Just last week, we were waiting for a therapy session and another mother was waiting with her child. I put Emmett down and instead of playing with the toys on the floor, he immediately crawled to this woman, that he had never met before. She happily picked him up and a new friendship was formed.
So, that is how I decided that "Embracing Emmett" would be a good name. Not only because he gives great hugs, but also because his affectionate nature steals the heart of everyone he meets. It is so easy to embrace his sweet spirit and love him for who he is (and I'm not just saying that because I'm his mom).

A Different Perspective

I like to think that I have always been a fairly compassionate person, but I believe that having Emmett has made me much more aware of others and slow to judge. When we were first told that Emmett had low muscle tone, I didn't know much about it. I quickly learned that it could affect many things in his life, not only his gross and fine motor skills, but also his eating, drinking, breathing, and speech.

It used to drive me crazy to see a child using a bottle, when they were clearly "old enough" not to. Now I know that low muscle tone can make it difficult to eat and drink and that a bottle may be their only option. I never imagined that I would have to help my 2 1/2 year old hold his cup and thicken his liquids, so he doesn't aspirate, but that is exactly what I do. I also never imagined that I would have to spoon feed him a large percentage of his food because he has difficulty chewing certain foods and doesn't have the fine motor skills to spoon feed himself.
These challenges, and many more, have made me look at things in a whole new perspective. Maybe the 4-year-old with a pacifier isn't coddled, but has sensory issues and it helps keep her calm. Maybe the 7-year-old in a stroller isn't lazy, but has low muscle tone and tires easily. Maybe the 9-year-old who is crying and screaming isn't unruly, but is autistic and is unable to verbalize what is bothering him. Maybe the student who is fidgeting and slouching in her chair isn't hyperactive, but has a weak core and just needs someone to put a stool under her feet. Maybe the toddler that doesn't respond isn't ignoring you, but has a slow processing time and needs time to absorb what is being said. Maybe the baby that wakes up several times a night isn't spoiled, but has sleep apnea and is just trying to breathe. Things are not always what they seem. There are many disabilities that aren't visible and many situations that can be misunderstood.
I'm not saying that there aren't spoiled children or that every child that misbehaves has a disability or a medical condition. I just want everyone, including myself, to be more compassionate and slow to judge.
I found a quote, several years ago, that I absolutely love:
"While we try to teach our children all about life, our children teach us what life is all about."
                                                                                                        -Angela Schwindt

Even without being able to talk, Emmett has taught me so much and I can't wait to see what else he will teach me, in the years to come.

Making Progress

It was nice getting back into our regular routine, after the holidays. We are so used to seeing therapists every week, so it was a little strange to just be home with no appointments. Emmett still had some therapies, but only a few. Corbin is so used it, he almost always asks, "who are we going to see today?" I am so glad that they both embrace our busy schedule and don't mind new situations.
Emmett had a follow-up appointment with his Physical Medicine and Rehabilitation doctor this week. We had only met with her once before in September. She is an awesome doctor. Last month, she called us on a Friday night at 6:30 pm with his MRI results, just so we wouldn't be worrying about it over the weekend. (The results were normal, in case you were wondering) She was very pleased with Emmett's progress over such a short period of time. He wasn't pulling to stand on his own, cruising, or crawling when she saw him last. She was very optimistic and is anxious to see what he is doing when we go back in April. I told her about some of the holistic therapies we use and she agreed that they are definitely beneficial.
We have been so blessed to have such a great team of doctors and therapists for Emmett. I hear horror stories of doctors telling parents that their child will never walk or never talk and I am thankful that we haven't had to deal with that kind of negativity. It is okay to be realistic, but only God knows what a child will or will not do. It is our job to help them and to love them, no matter what.

Some of you may have seen this already, but I wanted to share the testimonial I wrote about Emmett:


Emmett - 2 1/2 year old diagnosed with hypotonia and global developmental delay

(caused by Xia-Gibbs Syndrome)
     "Our son, Emmett, was diagnosed with hypotonia at 8 months of age and started traditional therapy shortly thereafter.  One year later, he had made some progress, but was still delayed in all areas.  At that time, Emmett could sit up with assistance and roll.  He could bear weight in his legs, but wouldn't stay on his tummy or attempt to crawl.  He had very inconsistent eye contact and limited fine motor skills.  He also tended to hyperextend his legs and used his right side more than his left.  We had heard about the Anat Baniel Method from an online support group and decided to do a block of lessons when Emmett was 22 months old.
     We could see progress almost immediately and others noticed the changes in Emmett, even those who had no idea we had tried ABM.  He had better eye contact, a longer attention span, and was more observant.  His body movements were also more organized and more deliberate.
     We continued to see similar results after each block of lessons.  We have had 5 blocks of lessons in the past 8 months.  In this time, Emmett has learned to transition to all positions on his own, crawl, pull up to stand, and cruise.  He is bending his arms and legs much more and he is using both sides of his body more effectively.  His eye contact and interactions with others is better.  His feeding and fine motor skills have improved.  He has better balance and has faster reflexes. 
     Since we started ABM with Jon, Emmett is more in tune with himself and with the world around him.  We believe that Jon has helped Emmett "put the pieces together" and reach his full potential.  We are so thankful that we found ABM and look forward to seeing what the future holds.  ~ Arika

http://yourmovementmatters.com/testimonials.html?m