Emma Joyce

Thank you to Rhonda for sharing her beautiful daughter, Emma Joyce's, story with us!

Emma was born April 20, 2007. Not long after, I had sensed “something” was not right. Emma seemed jumpy, delayed and not able to follow vision wise. At her 2 month immunization appointment, I asked her doctor to take another look at her. She was then referred to the pediatrician. A few weeks later at her appointment, he immediately sent us to Winnipeg Children’s Hospital. She ended up getting admitted for testing, which was to take a couple days. It turned into a very long three weeks. I kept telling the doctors it was like she was having a seizure. Finally they called the neurologist and he didn’t think so, but sent her for an EEG to be sure. Little did I know the next 45 minutes of that day would change our lives forever. They told us we were to wait in the hallway for about 45 minutes. After 15 minutes they called us in to tell us Emma has had 4 seizures since she had been in there. Although I was devastated, I tried to look on the bright side, thinking lots of people have seizures, it can be managed. I did not realize how dead wrong I was. Emma was given a load of Phenobarb to settle the seizures while they could do further testing. She was so sedated, she was out for 3 days, and I was starting to go crazy. She underwent numerous testing, such as EEG (had it on for a few days), MRI, LP, numerous blood tests, PEG Radioactive testing, and that is to name a few. She was having 20 + seizures a day, which were Infantile Spasms, so it just looked like she was jumping or startling while falling asleep, while sleeping or awakening.

She was finally released from the hospital and sent home on ACTH injections, which is a steroid. It worked wonderfully to control seizures, however, you cannot be on it forever. When she stopped the injections, we had numerous trips to ER here in Brandon as she was having seizure clusters ( seizing, brief stop, then seizing again, etc). We have had so many adjustments to her meds.

In June, 2008, her neurologist finally told me what she was diagnosed with, although I am pretty sure he knew before. She has Early Epileptic Encephalopathy of Infancy, otherwise known as Ohtahara Syndrome. It consists of, but by all means not limited to, cortical vision impairment, severe developmental delay (she is like a newborn baby), seizures (very difficult to control with medication) and feeding issues.

In January, 2009, Emma was admitted to WCH to start on the Ketogenic Diet, which it a medical diet often used to control seizures. At that time, she also underwent a feeding study, at my request. Since then she has been restricted to have anything by mouth, as she was putting 80% into her lungs, causing her to have aspirational pneumonia. She was scheduled for G Tube surgery. The night before surgery, she had a fever, which turned out to be the start of another pneumonia. Surgery was canceled and the next date was February 13th. She remained in the hospital all this time. After her surgery we returned home on the 18th of February. It took a lot of getting used to, as I was having to use the feeding pump, IV pole, etc. She adjusted wonderfully, life was great!

March 10th came along and Emma started having severe diarrhea. Her doctor and I figured, probably just a flu bug. Over spring break, we went into Winnipeg as she had appointments with Metabolics, neurology, surgery follow-up, and her pediatrician. They were all clueless as to WHY she would still be having diarrhea. We collected stool samples and sent them away, with no results to show anything. We took her off the Ketogenic Diet; put her on Nutren JR. with pedialyte to see if that worked. It didn’t. At the end of April, she was still the same. We went to the Rehab center for Children clinic to see her feeding specialist. We switched her over to a formula that is the most broken down formula you can get. After 5 days of being on the new formula, Emma was nothing but bones, she dropped weight like crazy. Her eyes were sunken in and she looked absolutely horrible. After having her on straight pedialyte, and no result for the better, I took her back up to the hospital here. The doctor could not figure out why either, especially after getting pedialyte on continual feed. Emma was so dehydrated and malnourished, that her sodium was so high; she was at major risk for a stroke. They admitted her to BGH. After being in hospital 4 days, with still no answers, Emma developed pneumonia again. Her doctor refused to prescribe her an antibiotic, and she was so weak, she kept desating and they finally transferred her to Winnipeg via ambulance. She was admitted to CK3 there, and shortly after, rushed into PICU.

In PICU, seeing Emma for the first time, hooked up to BIPAP, I thought, my God, this is it, this is how I am going to lose her. It is a mother’s worst nightmare. I was standing beside Emma and realized they had her G-Tube hooked up to a drain, to empty out her tummy. I asked the nurse in there, what is that coming out? Yes, it was poop. The next day, she underwent a fluoroscopy, to test where the fluid is going when put into the tube. That is when we finally found out why she had diarrhea in the first place. Her G-tube was in her colon, NOT her tummy! Needless to say, she was very dependent on the BIPAP machine and still very weak. She spent 2 months in PICU and up on the ward. Finally, we were sent home at the end of June, once Emma had recovered wonderfully as she could have. She was sent home on oxygen, and she had an NG and NJ tube for feeding and we were awaiting her surgery. First two surgeries were canceled due to the H1N1 breakout at the hospital in Wpg. All of the PICU beds were full and they would not do Emma’s surgery without a bed In PICU for her after.

Finally, at the end of August she went for surgery. Emma had to get a fundoplication, which is the stomach wrapped around the esophagus to prevent refluxing, repair of the two fistulas (hole in colon and stomach from first tube) and a new G tube. I made the decision for her to have an Epidural instead of Morphine for obvious breathing issues. After her surgery, she was placed back on Bipap, just so they didn’t lose headway with her. The next day, she was wonderful! She came off the BIPAP and was back on her O2 mask. After a few days in PICU, we were sent up to the ward. After a few days and after they were sure everything was fine and her feeds were being tolerated at continual, we came home!! When we came home, it was my job to work Emma up in volume and down to a bolus feed (one feed at a time). She is currently on 4 feeds a day, with each one lasting 2 ½ hours.

She still requires home oxygen, as well as portable when we leave the house. She is always on an oximeter, which shows her heart rate, O2 level, and will alarm when desating. We were so fortunate to get her wheelchair. It allows Emma to be most importantly of all, comfortable. It also allows me to take her out and feed her at the same time, as they put an IV pole on it for her feeding pump and her feeding bag and also allows me to hang her backpack oxygen on it.

We still have numerous appointments to Winnipeg. Emma goes to Neurology, Metabolics, Respiratory, her pediatrician, her ophthalmologist and the Rehabilitation Center for Children (which I also usually have to transport her really large equipment) in Winnipeg throughout the year. She also has a few appointments in Brandon, usually the doctor here, and all of our fun ER trips, which really add up in a year! Her PT/OT/ST come to the house now, as well as her OT from the Canadian National Institute for the Blind.

 

Emma still gets a lot of respiratory infections, due to her swallowing issues, and I’m sure the Trachial Malaysia is part reason. Since being home, Emma has went from a mere 15 pound girl that was first admitted into Brandon last spring, to a very big 41 pound girl!! She is such a strong girl and such a little fighter, and I am so proud and blessed to have her in my life.

Special and Determined

Jacob's birth story shared by his mom, Marla, of Special and Determined....

I was born March 22, 2006 at 1:32pm in Naperville, IL by cesarean section. I weighed 7 pounds, 12 ounces, and was 20 1/2 inches long. The picture above was my christening picture in the hospital before my shunt surgery (16 days old). I was born with a congenital heart defect called Tetralogy of Fallot, which is a congenital heart defect consisting of four different abnormalities.

Tetralogy of Fallot involves four heart defects: A large ventricular septal defect (VSD) - a hole in the septum between the heart’s two lower chambers Pulmonary stenosis - involves narrowing of the pulmonary valve and the passage from the right ventricle to the pulmonary artery Right ventricular hypertrophy - the muscle of the right ventricle is thicker than usual An overriding aorta - the aorta is located between the left and right ventricles, directly over the VSD. As a result, oxygen-poor blood from the right ventricle flows directly into the aorta instead of into the pulmonary artery

Before I was born, my Mommy and Daddy wanted desperately to have a baby. They went through a year of infertility treatments until it got to be too much for Mommy. One unexpected day after Mommy stopped treatments, she found out she was pregnant.

Mommy’s pregnancy was considered “high risk” because of her age. The obstetrician recommended a few tests to make sure all was okay with the pregnancy. Mommy had a Level 1 ultrasound which is also called a “screening ultrasound” to check that there is normal growth of the baby and to look at the location of the placenta and to be sure there is enough amniotic fluid. During the ultrasound the Perinatologist discovered a hole in my heart. He told mommy that there may be a possibility of Down Syndrome because of this, and asked if she wanted to have an amniocentesis to confirm.

Mommy didn’t know how to feel about all this information except scared and overwhelmed and she didn’t know how to tell Daddy. After Daddy and Mommy talked and determined that they were happy to be having a baby and whatever God blessed them with they would handle it with a loving and open heart, they decided against the amniocentesis, and just had my heart monitored over the next 5 months to see how it was growing.

Mommy did all the things that expectant moms do. Started buying clothes, got the nursery together, tried mommy yoga (that didn’t go over that well) and had a baby shower. She wasn’t going to let anything ruin the excitement she was feeling as an expectant mom, she had waited far too long to be a mommy.

My Birthday: Well it was the day for me to come into this world and everyone was anxiously awaiting my arrival. Mommy and Daddy got prepped to go into the surgery for my delivery.

And here I was blue, as was told to Mommy & Daddy by the Pediatric Cardiologist before I was born. Mommy was eagerly awaiting the scream, after a couple of seconds there it was. Daddy never told mommy until just recently that I wasn’t breathing when I came out.

I got to see Mommy for only a few seconds before they rushed me off to the NICU to evaluate me. After what seemed forever, the Neonatologist came to the recovery room to tell Mommy and Daddy of the heartbreaking news…I might have Down Syndrome, but it won’t be confirmed until the karotyping (test to identify and evaluate the size, shape, and number of chromosomes in a sample of body cells) blood test came back from the lab. However there were other characteristics that would give them an indication I had Down Syndrome. The Simian Crease on my left hand (The presence of a single transverse palmar crease can be, but is not always, a symptom associated with abnormal medical conditions, such as fetal alcohol syndrome, or with genetic chromosomal abnormalities, including Down syndrome (chromosome 21), and a large gap between the big toe and the toe next to it on both feet.

Mommy and Daddy were quiet they didn’t know how to react to the news. Mommy was thinking it was her fault because of her age and Daddy just didn’t say anything, except “I’m going to call everyone to tell them the news.” Then the nurse brought a picture of me to Mommy. Mommy’s eyes started tearing up, she could see it in my eyes that I had Down Syndrome. Her heart started breaking.

It seemed like forever since Mommy and Daddy saw me so they wheeled Mommy down to the NICU to see me. I was hooked up to monitors and had an air bubble over my head to help me breathe, but Mommy wanted to hold me.

After two weeks in the NICU and several issues with my oxygen levels falling too low, I was transferred to another hospital were it would be determined if I would need surgery.

I had a Blalok-Taussig shunt put in at 16 days old to help with the flow of blood, so I could get stronger to have my complete heart surgery (open heart) when I was 6 months old.

Well finally 3 weeks and one day after I was born I was able to go home. My parents were so excited to get home and start living our lives as a family.

As I was getting stronger Mommy arranged for early intervention to start. I had a physical therapist come to my house to help me start to get stronger and help me to reach my milestones. I was scheduled to have my complete heart repair at 6 months old and they needed me to be strong to go through this major surgery.

Mommy would sit in on my therapies with Darla the physical therapist to learn all that she could to help me get stronger and help me reach my milestones. This is mommy helping me to stand with the encouragement of my pray bear. She used the step stool since this would help me to learn to grab on to something and pull myself up. She was very creative in what she used to help me reach my goals.

You can read more about my first six months in my book “Jacob’s Journal – My Journey Home”.

Follow me and my growth as I am now almost 6 years old.

Brick by Brick

I just heard this song, Brick by Brick by Bess Rogers. It made me think of all the little, almost unnoticeable, changes that our daily efforts produce for our special kids! Of course, this is the case with all children (and all adults, for that matter), but when other kiddos are reaching and surpassing milestones, we cherish and celebrate the "inchstones"! And, oh boy is it worth it!!! 

Three steps forward and two steps back we go, 

You try and push harder, they push right back, I know, 

That time moves fast and change moves painfully slow. 

It's hard to see the shift when you're so close. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

You plant a seed and wait for it to grow. 

They hate it now but they're too scared to know, 

That their children's children will sit underneath it's shade, 

And their children's children will bask in the love you made. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

It won't show for the longest time,

Bamboo Brace

I got this email from Sue of Professional Therapies, oh, about two months ago. I finally got around to taking a peak at the information and was thrilled at what I found! Read this over and see if this might help your kiddo or any of your friends and spread the word!....

"My husband and I are both physical therapists with a pediatric practice in Salt Lake City. About 10 years ago my husband (who is NDT trained) felt there was a tool missing to help him treat children with cerebral palsy and over time (and many prototypes) we developed a pediatric elbow brace called The Bamboo Brace that we manufacture locally.

"Although we originally developed The Bamboo Brace for kids with spastic hemiplegia type CP we soon realized it's success in using it for children with Rett Syndrome, Brachial Plexus Injury, sensory disorders, global motor delays, etc. Our brace is unique because although it promotes extension at the elbow it comes with 5 different flexible and interchangeable stays that adjust to varying amounts of spasticity/instability depending on the individual child's needs. The above link will take you to our website for more details and information on how it works and who can benefit from using The Bamboo Brace."

About the Bamboo Brace

Bamboo Brace reviews

Bamboo Brace on facebook

Peaceful Child

There have been so many successful and wonderful stories as a result of this blend of essential oils. There has even been a news story about it on MSN.

Peaceful Child Essential Oils Blend: Why.



Peaceful Child Essential Oils Blend: How.

Team Kellan

Meet Kellan:

Isn't he cute?! His parents are helping raise awareness and fighting for a cure for Angelman Syndrome. Please support them in their walk if you can. Information can be found here.

Milestone Moxie

Guest post by Cassie of Beyond Measure.

I follow a lot of blogs... I love reading about all of these other kids.... I love reading about their many victories. I pray for them when they are facing surgeries. I care about all of these kids and their entire families. Recently I have noticed that many of the moms out there are struggling. It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most. It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk. You are frustrated. Beat down. Exhausted. Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working. Or maybe you are beating yourself up because you don't think you are doing enough. It's your fault.

I remember those days so well. I cry sometimes when I read your blogs and I hear the pain in your words. That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.

And I can vividly remember how different he was, even as an infant. Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left. He had to work so hard to keep his head straight.



I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't. Something so simple. My son couldn't do it. I remember leaving that same play date crying. And honestly I eventually stopped going to play dates altogether. I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.
That was the goal we would work on.

As an infant, Caleb did not move his legs at all. And I mean no movement. They just flopped out to the side like a frog.



I saw how other babies would constantly kick their legs and could even stand up a little when held. Not Caleb. No movement, no feeling, nothing. Just sweet little legs that flopped out to the sides.

That became my priority. I just wanted him to try and use his legs. That was the new goal.

Next was head control. I called Caleb "bobble head" because the boy could not hold up his head. It was just too heavy.



He required so much support. I just wanted him to be able to hold his head up.
That became my priority.

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him.



His PT had to make him a special seat to go in his high chair so that he would have more support when eating.



It felt like we were constantly having to do things, adapt things, to help Caleb.

Things that every other baby could do with such ease, was such a chore for my son. Everything was a reminder that he was different.

The next priority was rolling over. I worked and worked with him. Desperate for him to just roll over. Begging him too. Bribing him with toys just out of reach so that he would roll over to get them. Nothing. I was convinced that he would never roll over. While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over. Caleb was 10 months old when he rolled over for the first time. It was to get a teddy bear that was out of reach. I cried. Rolling became his means of getting around for a long time. He would just roll across the living room to get to what he wanted. He found a way.



And then came the milestone that I thought would absolutely break me. Sitting. Caleb could not do it. I did everything the PT told me to do, I worked with him daily. I prayed and prayed. I asked family to pray. I was desperate for him to sit up. I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own. Caleb was about 15 months old before he could sit up well on his own.



With every milestone reached, there was another one that needed to be worked on.

For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on. I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with. I would highlight the things I worked on for that day. And I would beat myself up endlessly on the days that I didn't get to everything. I felt like a failure when I didn't work with him enough. I carried a heavy burden. Every day. Every time I went to the fridge, I saw that list, the things I was supposed to be doing. A constant reminder that I wasn't doing enough. I wasn't enough.

I think us moms are way to hard on ourselves. I know I am. This idea that we have to do it all, be it all, every single day. I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry. We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife. And that's just naming a few. We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids. We argue with doctors who think they know more about our child than we do. We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are. How sad you are. You love your child so much and your heart is breaking because he/she isn't walking. Or sitting up. Or talking. Or standing. Or whatever. It's always something. There is always something to work on, a goal to achieve, a milestone to reach. A mountain to climb. It's exhausting.

Caleb is 5 1/2 years old now. I've learned over the years that Caleb does things in his own time. He works hard and he does as much as his body will allow him to do. And I've seen him climb many mountains. I've seen him find a way. I've seen him succeed.





I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.



I've seen him do things we were told he wouldn't be able to do.



I've seen him do things I didn't think he would ever do. Like crawl on his hands and knees. He crawled on his belly until he was 3 1/2 years old. I had all but given up on him ever being able to get his knees up under him. But he did it, he got stronger, he figured it out. In his own time.



I've seen him graduate from HKAFO's to just AFO's.



And I have seen him walk. I have even seen him run.

I've seen him get stronger and stronger. I have seen him use legs that he can't feel.



And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion. As Caleb has started school, I have found new things to worry about. New goals to reach. But I'm learning to just appreciate all that he is and all that he has accomplished. My burdens aren't his to carry. He isn't sad, so why should I be? Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go. Getting a wheelchair didn't make him sad. He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired. Beat down. Sad. Defeated. Go look at your the precious child God has given you. We have beautiful, strong, resilient, determined kids. Our kids have and will achieve great things. Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them. They already have. There is great joy in that.

Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

FASD

Hi My Name is Ann Michelle

I am the mother of two boys, Jeremy (12) and Kennan (7), both joined our family through adoption. Like pretty much everyone on your site I didn’t start my parenting journey thinking I would parent a special needs child. In fact we didn’t really understand what might be long term for my second son until a year ago. It has been a long journey to this point.



FASD

What is FASD?

Fetal Alcohol Spectrum Disorders
FASD: is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

FASD includes conditions such as:
¨ Fetal alcohol syndrome (FAS)
¨ Partial fetal alcohol syndrome (PFAS)
¨ Alcohol-related neurodevelopmental disorder (ARND)
¨ Alcohol-related birth defects (ARBD)
Fetal alcohol effects (FAE) * obsolete terminology.

What Are the effects of FASD?


The effects of FASD vary among affected individuals.
Outcomes associated with FASD can include:
¨ Specific facial characteristics
¨ Growth deficits
¨ Mental Retardation
¨ Heart, lung, and kidney defects
¨ Hyperactivity & behavior problems
¨ Attention & memory problems
¨ Poor coordination or motor skill delays
¨ Difficulty with judgment and reasoning
¨ Learning disabilities

“Of all the substances of abuse (including cocaine,
heroin and marijuana), alcohol produces by far the
most serious neurobehavioral effects in the fetus.”
Institute of Medicine, 1996.

Us

My husband, Delmer and I have been married 17yrs. We learned two years after our marriage and two miscarriages later that we had less than a 10% chance of having biological children. We decided with the Lord’s help that adoption was the way we would build our family and thus began our journey.

Our Family

Five years into our marriages we adopted Jeremy and four and a half years after that we adopted Kennan.

Our Story

When Kennan was first born he seem healthy and “normal”. There was nothing that noticeably indicated that there were larger issues that would rear their ugly heads in the future. Things that we noticed where not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snuggly as others. As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was have trouble with language acquisition and speech problems. People would tell me he was hard to understand – even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more noncompliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more “experience”. Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birthdate. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences – both natural and disciplinary. School was becoming more of a battle he was having trouble staying on task and completing work. Homework was nearly impossible because he would through terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of. In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birthmother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birthmother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birthmother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was, “that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?

We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the of task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birthmother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birthmother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did. We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper.

In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!! There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder), SPD/SID (Sensory Processing/Integration Disorder), DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the possibility of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)). And if the Psychologist that we saw this last summer ( a whole other story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. So this Wednesday (Oct. 5, 2011) we are off to see the Geneticist for further evaluation.

Meanwhile my son sees an OT once a week for his sensory issues, we struggle with getting him to school and getting school work done (he doesn’t qualify for any services at school at this point because he isn’t two years behind – massive frustration) and we have just received approval to start our fundraising for his service dog (specially trained to meet his needs). And despite all the above disorders there are many people who still think he doesn’t have any special needs. You see when Kennan walks into a roomful of other second graders he appears (and often acts) like any other kid his age. He has learned to “keep it together” at school for fear of what other kids will say. Because many kids with FASD are like Kennan FASD has become known as the invisible disorder. They want him to,”just buck up, work harder, quit goofing around, stop being lazy, pay attention, stop the behavior, and just get the job done,” never trying to understand that maybe just maybe he can’t – he has brain damage and it’s permanent – that doesn’t mean he can’t be successful – but it does mean he might have to do it a little bit differently than many other children.

Marcus’ Story

Adapted from an old blog post by Sue of Lee Life and Lessons.

I’ll always remember October 2007. It was the month Marcus was diagnosed with Joubert Syndrome.

My pregnancy with him and his labor/delivery were uneventful. But when he wasn’t visually tracking and then developed an intermittent head tremor, we knew something was wrong. After seeing several specialists, we finally had him undergo an MRI and subsequently received the phone call that changed our lives. At worst, we had thought he had a vision impairment. But when the doctor told us of the diagnosis, she rattled off a list of challenges that “some – not all” children with JS face. So, in one phone conversation, we heard terms that no parent wants to hear: developmental delay, poor coordination, physical disability, mental retardation, vision loss, kidney failure. In her own words, she told us to rule out a “normal” life for our precious boy.



I remember Mike and I fell asleep in each other’s arms after crying and praying. How we got out of bed the next day remains a supernatural act of God because I felt like the news we heard the night before had strangled us to the point of suffocation. Even more miraculous is that we also went to the pumpkin patch that morning because we had already promised Audrey we would go. So we took pictures, cheered on Audrey in the bounce house, and picked pumpkins. Only the Lord knows how we got through it with smiles, when inside, our lungs had collapsed. It was purely the grace of God pumping oxygen in our bodies to be able to take each breath.
Marcus was 4 months old then and at that point had very little head control. He also had not developed his ocular motor strength/coordination at that point, so the possibility of blindness was still very real. His future was so uncertain and hope for him was very small. Needless to say, seeing a child in a wheelchair at the pumpkin patch made my soul drop even more. Later on that day, Mike went for a run and came back with tears after seeing a father teach his son to play baseball. We realized we wouldn’t be able to see the world the same again anymore.



One unexpected thing for me, that I didn’t expect, was how my identity would change. Being thrown into the world of special needs, I felt like I wasn’t just Marcus’ mom anymore. I was also his OT, PT, speech pathologist, psychologist, advocate, and nurse. I have often felt like I had to introduce myself to people as a mom of a child with special needs because it consumed my body, heart, and mind so much. But even though October 2007 has changed our lives forever, and though we can never go back to how it was before, and even though it is such a heart-wrenching and consuming journey, it’s so good to remember Galatians 2:20.

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

Although often forgotten, this verse has recently been a sweet reminder to us. Knowing that we are bought with the precious blood of Christ, and that He now owns our lives is a comfort. Remembering that it’s not about our life, but about His life in us, is a refreshing reality check. Seeing that we don’t have to live this life perfectly, but to live by faith instead, is reassuring. That He loved us and gave Himself on our behalf so that we wouldn’t have to be swallowed up by this life is a relief.



It’s been 2 years since then. Two years along in our Joubert Journey, which means we are still just running our first of many laps. But it’s amazing how much we’ve experienced and learned since then. The breathing is still purely by the grace of God. And though we often get angry we can’t just breathe easily on our own like we used to, it’s good to know that we need Him desperately and that He provides His grace lavishly.

Sarah's Story

by Lesley of My Morning Glory

Sarah is my third child. The icing on my cake- as they say. After two boys it was exciting to be having a girl. The boys were 7 and 11 when Sarah was born. I had all available prenatal testing and she passed with flying colors. I was a single parent and wanted to be prepared in case there were to be issues. But it appeared all was well.

Sarah arrived one week early at 8 pounds 8 ounces. Very easy delivery after an uneventful pregnancy. She appeared healthy and I took her home 2 days later. No immediate signs of the troubles ahead.

The first warning sign was at her 2 week checkup. She had not gained the appropriate amount of weight, in my opinion. The pediatrician thought she was fine. I was breastfeeding and thought maybe with the 2 boys and running around my supply was low. Or maybe whe was having trouble nursing as she would frequently pull off to catch her breath. It was like she couldn't coordinate the sucking/swallowing thing. At any rate, whatever the reason, I went cold turkey to formula bottles. And then she gained like a champ. She still pulled off a lot but got much more nourishment through the bottles.

The next sign was at 3 months when I took her for her first portrait session at the photographer's. She could barely hold her head up to prop on her elbows, like the boys did at that age. Then she didn't roll over till 6 months, then she couldn't babble unless the bottle nipple was in her mouth, then she didn't sit independently until 10 months, she could not crawl on all fours or pull to stand or use a pincer grasp. Basically, her gross and fine motor skills stalled at about a 7 month's old level. Which is where they remain today. She is almost 15 years old now.

And where was the medical community in this? They were not quite sure what was going on with Sarah. The neurologists had no answer. She was given the diagnosis of CP "for insurance purposes" but we knew that wasn't it. She continues to hold that diagnosis today purely for the insurance.

Some of Sarah's issues seemed to get worse gradually over time. She lost the ability to hold a cup and drink out of it, the ability to pull herself along on her belly, the ability to babble, the ability to finger feed. She lost them so slowly I almost didn't notice it.

At the age of 4, I remember discussing with her physiatrist the possible diagnosis of a cognitive disability. Her physiatrist disagreed with me and said Sarah more closely resembled a child with autism. So she was seen by an expert in the field, who said Sarah only had features of the condition, not enough for a diagnosis.



At this point I had a darling little girl with atypical cerebral palsy and features of autism. And it remains official to this day.

Every few years I take Sarah to a geneticist to review any new discoveries in the chromosomal world. She is tested for this or that but nothing has been found abnormal in any of Sarah's testing.

Sarah's situation most closely resembles Rett Syndrome. I had stumbled upon a support group on the internet 10 years ago. This group was for the parents of undiagnosed children that appeared to be a mix of Rett and Angelman Syndromes. Sarah fit right in. Even though she tested negative for both. As the years went by, she swayed more to the Rett side where she still sits today. She cannot walk, talk, feed herself or change her position. She is legally blind. She is full care in every possible conceivable way and then some :)

I think of her as affected by Rett Syndrome. I belong to Rett Syndrome support groups. She is followed by the RS department at Children's Hospital in Boston. She continues to test negative for it and she is retested every few years as the science improves. It is through other Rett parents that I learn how to manage issues with Sarah. They are an invaluable resource, offering encouragment, ideas and support. I have gained confidence in her care, learned to think outside the box for her schooling, and discovered how smart Sarah is.

So that's the medical side of things, which really is not Sarah's story, in my opinion. Those are just the facts. THIS is Sarah's Story:

Sarah is a gift. I know it sounds cliche, but there is no other way to say it---she is a jewel, the best thing that could have happened to our family. I cannot imagine how we could possibly have landed such a wonderful child. I felt this from the very beginning. I just knew from early pregnancy that there was going to be something glorious about this little person. And, eventually, no matter what I was told about the severity of her limitations, I just didnt care. It didn't matter. She was awesome just the way she was and I was so grateful to have her.



I feel privilged to be her mother. I am thrilled to be able, in this lifetime, to have the chance to experience raising both 'normal' children AND a special needs child. Not everyone gets that opportunity. I have no desire to change her or 'fix' her. I'll take her just as I got her.

My sweet girl.



The funny thing is, it is exactly the opposite of what most people think. I have found that the general public looks at Sarah as a hardship, a burden, that I must have extraordinary strength and endurance to take care of her, that I need a God's blessing to get through it and to cope with the calamity in my life. I see pity. I hear: 'I dont know how you do it'.

Well, if I could shout this from the rooftops, I would:

I have already been blessed... WITH THIS CHILD. She is delightful! We cannot do enough for her! She brings happiness! She brings joy! She brings laughter! She brings lessons! She brings contentment! She brings peace! She brings simplicity! She enriches our lives! We do not cope, we savor! She is a positive in our lives! We are lucky! We are grateful! It matters not a bit the things she cannot do! We learn from her!... Surprise, everybody!

The thing is, we are not teaching Sarah, she is teaching us. And I share her with whomever shows any interest. People need to know these children are not tragedies, they are amazing, wonderful, inspiring people, just the way they were born. There is nothing 'wrong' with them. They are perfectly themselves. These kiddos give more to us than we will ever be able to give to them. I want everyone to know. I want Sarah to have the opportunity to give to them, to show them another way, to challenge their view.

Because that's what she's on this earth to do. Teach.



And that is Sarah's Story.

Eternally Grateful for Addie

Thank you to Jennifer of The Henderson Family blog for sharing this special story with us....

We hit the ground running and I would say that we never looked back, but that is not a true statement. We look back from time to time and see a fear that was so deeply imbedded in our hearts that we never thought our pain would subside.

How do you tell people that your baby has Microcephaly when you can’t even bring yourself to say the word? It took me 102 days before I could tell anyone Addie’s diagnosis. I was so driven from the moment of her birth to protect her from the world that the fear of judgment and rejection kept me from telling anyone the name of Addie’s diagnosis.

The little piece of paper that Addie’s diagnosis was written on sat on the dresser in my bedroom. It sat there collecting dust and I couldn’t bring myself to even glance at the word. The stigma of having a special needs child pushed me to avoid saying the name; all I could bring myself to tell people was that Addie “has special needs”.

Although there was no medical reason for me to believe that there would be something out of the ordinary with my unborn child, I felt it in every part of my soul. December 31, 2006 at 6:00 a.m., the deafening silence of the operating room confirmed what my heart already knew. My Sweet Baby Girl would have to fight for every accomplishment in her life and would always be known for her diagnosis.


Within two weeks of Addie’s birth, I had her set up for every available therapy that I could find for her. I spent virtually my entire maternity leave sitting in one practitioner’s office after another.

I buried the person that I used to be and I moved on.

I had a new goal in life and that was to educate anyone and everyone about Addie. I refused to allow anyone to disregard her and I refused to allow her to know anything other than pure love.

We hit the ground running alright.

My husband, Chris:


My son, Julien:


And I:


Have made it our mission to provide Addie with everything in life that she deserves and to give her every opportunity in life that any other child has, just in different ways.

We have settled into our new lives. There are days when I don’t focus on Addie’s disabilities and then there are days when the world feels like it comes crashing down. A friend told me not long after Addie’s birth that, “This life is not a broken dream, it's a different dream.” and so it is. My dreams vary from day to day. Some days I just dream of continued acceptance for Addie and our family and other days, I dream of being Superwoman, just so that I can take care of every worry in our lives.

Like most other parents of special needs children, we were given a very grim prognosis. The first neurologist spoke the words that could have paved the road for Addie’s future, “She will never walk, she will never talk, she will never function as a normal child”. He told us that he didn’t “mean to take away all our hope”, but that he wanted us to understand the facts. Instead of folding under those words, it was immediately decided in my heart that I would prove him wrong. I have spent the last four years doing just that..

The first year was by far the most emotional.


The unknown plagued my every thought. We worried constantly about every aspect of Addie’s life and the life that we were making for her. We made drastic changes to accommodate her potential future needs. We sold our home and moved to a home that would be more accommodating to the needs of a handicapped child. We bought a new SUV to accommodate the vast amount of gear that seemed to follow us wherever we went. We bought every item that could possibly benefit Addie in any way.
I spent countless hours researching and researching some more, looking for the answers that no one could give me. At the end of the first year, I allowed myself to realize that the answers would come only in due time. The only thing we could do was to push Addie to excel, to surpass all odds and to love her more and more each day.

I can’t tell you how many times I look in disbelief at the MRI images of Addie’s brain. I look at the photos and realize that the images before my eyes gives me no more insight to the life we live than the words that resounded through my heart as we were told that our child would “never function as a normal child”. Addie’s brain has several areas of concern, including an unusually small cerebellum, frontal lobe abnormalities and Cortical Dysplasia.

There are moments when all I focus on are the words that we have heard as people tried their best to predict our future. Then there are the moments when all I have to do is look into Addie’s beautiful blue eyes and I see the miracle that God has granted to us.



There is no scientific reason for the cause of Addie’s Microcephaly and we are at peace with that. It wouldn’t really matter if science provided us with an answer, we know that Addie is who she is because of God’s decision for her and HIS plan to place her into our arms. We are eternally grateful for Addie.

I tried to think of one story that would best describe our lives and Addie or that would make the most impact. It never came to me, I am still searching for a way to capture our lives over the last four years. If you are interested in learning more about Addie and our lives, please visit us at The Henderson Family.



(Professional photos courtesy of Kim Sharit at Kim Sharit Photography.)

Resources for Social Skills

Effective Social Skill classes are hard to come by. And, often times when you find a group therapy class, it might be out of reach if your insurance won't cover group activities. We've been at this for ten years now and have only been a part of two or three successful groups. We've found Group Social Skill therapy to be a bit of a catch 22. Either your child is in a group with kids just like them and they all struggle with interaction, or you are in a group that has more typical functioning kids and your child isn't experiencing true pressure to interact. What to do? What to do?

A lot of the time, what ends up happening, is a parent is left to their own devices. Instead of a clinical environment, a lot of interaction at home, church, school, and in non-therapy settings like the grocery store or dentist's office becomes your therapy gym. Almost any location or setting can be converted and used to practice therapy skills.


Jackson has just started another Social Skills Therapy group. Because Jackson is getting older and has more ability and confidence, we are hoping this group will be beneficial. Jackson's therapist gave us the following resources. We thought we'd pass them along. If you have other effective at home resources, please leave them in the comments. Other parents are sometimes our best resource.


1. A great website for lots of resources and ideas:
http://www.socialthinking.com/

2. "You are a Social Detective" by: Michelle Garcia Winner, Pamela Crooke, and Kelly Knopp
http://www.socialthinking.com/
(Fantastic book about social thinking written for kids and teens.)

3.Video modeling DVD's and other resources to help kids model appropriate skills and behavior.
http://www.modelmekids.com/

4. What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What to do Guides for Kids), Paperback (April 14, 2007) by: Dawn Huebner and Bonnie Matthews. (Amazon)

5. What to Do When You Worry Too Much: A Kid's Guide... by: Dawn Huebner. (Amazon).

"I Believe In You"

I believe in you,
Your impetuous determination tells me
that you will never give up.
You have so much to give,
and have given so much already.
I believe that you will stand tall.
We are beside you, and will always be.


There is no rush, so take it slow, one step at a time.
We are ready when you are.

-Author Janet Harrold-