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.

Special Needs Adoption

by Elizabeth Fennelly of Following a Call to Adoption

Special Needs Adoption? Me? I’d never have considered myself “special needs adoption” material. I’m a “planner” and, although I generally ignore it, the fact is that I’m freakishly analytical. I think, rethink and over analyze everything… to death! I’m the kind of person that keeps pros and cons spreadsheets and right now, the analyst in me is freaked out and hyperventilating, wondering how it’s possible that we’re preparing to adopt a functionally deaf and blind toddler. Yes, I checked “blind – okay” on my spreadsheet, but deaf? No, that certainly wasn’t on my list and deaf AND blind, you better believe that wasn’t part of my plan! I’d planned it all out. We would adopt internationally; we’d adopt two little boys that wouldn’t have a home without us, but came “no strings attached”. I wanted orphans because I couldn’t face the guilt of delighting in my child, knowing that my joy came at the expense of another mother’s broken heart. So, no, a local little boy with significant handicaps was absolutely not part of my plan.

Am I panicking? Yes, I get a case of the “panic attacks” at least once a day and I ask myself over and over what I am doing and whether I’m about to make a huge mistake, one that will affect not only me, but the person that I love like I never imaged I could and who loves me no matter how obnoxious I am, and then, there’s this little blue-eyed miracle baby that doesn’t know we exist. But, no matter how many questions the rational me asks and how many frightening scenarios my mind creates, I don’t care because I love this child and it is stronger than any of my fears.

Am I the special needs adoption type? Yeah, I’ve still got to say that I’m not, as far as I’m concerned, I’m not adopting a “disabled” child. I am in awe of this toddler, who is happy and curious, despite facing a cross that makes my diabetes seem about as burdensome as a cold. I am fascinated by his ability to adapt and interact with all the “normal” people around him and by the fact that, although most people would consider him completely cut off from the world, he is affectionate and loving, recognizing when his foster mom is unhappy and delighting in making her laugh. This baby, who qualifies as both deaf and blind, and, according to society’s perspectives, is nothing but a burden, has a set of birth parents that loved him so much that they gave him up for adoption when they realized that they could not meet his basic needs. In addition to his birth parents, my little boy’s foster parents absolutely adore him. His foster parents have cared for him through his “deaf, blind, will never crawl or walk, or talk” diagnosis and, with the determination that can only be found in love, refused to accept that he would be condemned to a wheelchair and taught him to crawl, and to walk, and to run. And then, here we are, two random adults that have never met this little survivor, but are prepared to love him forever, not because we’re preparing to talk about how wonderful our kid is doing in school or what a great career he has, but because “there is no me without you”. That’s three complete sets of parents that are prepared to step way beyond their comfort zones, two of whom have or will have their hearts broken by loosing this little “burden”, and accept that sorrow because they love him. How many children have that kind of batting average? This is an amazing child and, God and the Province willing, I will rejoice in being his Mom.




We adopted a special-needs child, not because he was the best we could do, but because he was an amazing child, who happened to have some special-needs. Although many of my wonderful child's disabilities turned out to be terrible misdiagnosis - he does not have Cortical Visual Impairment of the first order, but mostly seems to have suffered from vision delays due to the fact that his extreme GERD meant that he was on his back almost all the time and his optic section of the brain was compressed by his flattened skull. When we brought him home, we increased his protein and calorie intakes significantly and the resulting growth spurt decompressed the back of his brain. Now, while he stills has his bad sight days, his principle problems are the stroke he had at birth, which means that his little left foot is constantly on point, his GERD, which resulted in a fear of food and means that he is only now learning to chew at age 5 (but he is such a trooper and tries so hard, even if you can see that he is kind of scared of choking!), and the fact that he has profound hearing loss. (Being born at 25 weeks and weighing in at 700 grams will make life a little harder.) However, he is an amazing and incredible child. I am profoundly grateful and blessed to be his mother. He is the greatest blessing of my life and, while everyone thought we were crazy to start with our family with a special-needs child, I believe that society has it all wrong about these kids. Kids are not commodities or some success goal. Kids are the opportunity to love beyond anything we imagined possible and our special-needs kids both return that love in a way that leaves me absolutely humbled. I am a Christian Catholic, so that affects the way that I view everything, but, when my son loves me and forgives me for failing to be Mom of the Year, he offers me a direct glimpse into the generosity of God. My son loves me unconditionally and it is humbling to have such a tiny, and often mischievous, little boy offer me the help and example I need to get up from my fall, ask forgiveness and try again. People ask me how I survive as a special-needs adoptive mom and I tell them that what they're seeing isn't surviving, it's thriving and I wouldn't change my life for the world!

(I am also a special-needs, foster-care adoption advocate and I believe that 300,000 plus kids in care, waiting for families to call their own, is a tragedy that must not be ignored!)

I Am Not My Body

I Am Not My Body is a full length documentary premiering April 5th. It is the story of Marius Dasianu, a young Romanian boy who was left with 3rd and 4th degree burns after a severe house fire in 2007. Both of his parents died in the fire, and Marius didn’t find out they had passed away until more than 5 months after the fire.

The fire burned away his nose, made it so he couldn’t blink, and doctors amputated all 10 of his fingers because of the infection and dead flesh.

Two students interning in his hospital from Brigham Young University met him and fell in love with him. With their families help, they brought him and his brother to the United States so Marius could get better medical care.

Doctors from the generous Shriner’s Hospital for Children have repaired his eyelids so he can blink, completely rebuilt his nose, and turned two of his toes into thumbs.

But that’s only part of the story…

His adoptive mother was diagnosed with an advanced stage of cancer. While he had surgery in Los Angeles, she would receive chemo and radiation treatments and then drive from more than two hours to be with him. She did this every day he stayed in the hospital.

While he has his moments (he is a kid), he always smiles, rarely if ever complains about his burns, situation, or surgeries, and has an incredibly positive attitude.

He goes swimming, wrestles, plays trombone, does karate, plays foosball, drives a go cart…all without hands.

The movie premiere will be held in Provo, Utah on April 5th. Tickets are complementary, but you do have to register. If you can come, go here to register! (I'm going, so let me know if you decide to come so we can try to meet!)



For more information, go to mariusmovie.com.

Picking Patrick

A special story about a special boy, Patrick, by his special mom, Emily Hoopes.

It was unseasonably snowy for the first week of November. It was my day off work, just after payday, and I was sitting down to the table to make a shopping list when the phone rang. It was our adoption caseworker. I'm sure we exchanged some introductory greetings, but I remember none of the conversation until she said the words, "There was a baby boy born in Michigan on Halloween."

Nine months earlier, my husband and I had started what we were told was our best window of opportunity to conceive a child. I had just had a surgery followed by several months of hormone therapy. But, by spring, our doctor sat us down and explained that what we were doing wasn't working. We needed to take more drastic measures before the window of opportunity was gone. We went home, discussed the options, prayed, and received what we feel was a very clear answer about what to do. I called and thanked my doctor for his efforts. And we started the application to adopt. By September, we'd completed our application in record time and were settling down for what we'd been warned would most likely be a very long wait.

Part of the adoption application is a "preferences checklist." It includes a list of possible health problems, as well as options about birthparents, race, etc. The training classes we attended emphasized the importance of really studying this list and selecting only those conditions that we felt we were prepared to handle. We followed the counsel and researched all kinds of possible health problems, but in the end, it all just felt silly. In our view, your child is your child. You don't tell the Lord what your child should be like. You trust Him to put families together the right way. It's about faith. And that's what we told our caseworker when she pointed out to us that we'd left ourselves open to adopting a child with severe special needs.

Because she'd warned us before that we'd hear of a lot of special needs adoption situations, when the phone rang that snowy morning, I was more surprised by the fact that the call was coming so soon after we'd been approved than I was to hear that this baby had health problems.

Still, my philosophies did little to prepare me for reality. There I was, scribbling notes on my shopping list. "Boy." "October 31" "Korean" and then "Birth defect" This baby had a major birth defect. His intestines had formed outside of his body, a defect called gastroschisis. I guessed how to spell it as she went on. Next I wrote "1-2 years," the child's life expectancy and I could feel my heart breaking. She explained to me that he'd need to travel out of state for surgery and I wrote "Pittsburgh? Florida?" I asked a few questions, most of which she didn't have answers for. Then, she asked me if I thought we'd like to be considered as parents. I told her that, obviously, I'd need to talk to my husband. She told me she'd send me copies of the e-mails she'd received with details and his picture. I hung up the phone and the tears started to flow.

Sure, I'd checked the boxes saying that I was open to raising a child with special needs. But until you're presented with a child and a diagnosis, you can't begin to comprehend what that means. It had never even entered my mind that I could be mother to a child who might not live. Was I strong enough for that? I didn't feel strong enough for that. The defect was so strange and, well, gross that I couldn't wrap my mind around it. Had I really checked this box? And then the e-mail with information on the diagnosis came and I didn't understand any of it. It had medical terms in it like "gastroschisis" and "parenteral nutrition" and "palliative care." I didn't understand them. It said that the child could only live two years, but even Wikipedia and google couldn't explain why.

But the baby boy in the picture sure was cute, even with an IV sticking out of the top of his head. His dark eyes seemed to be looking right up into heaven. The picture was titled "Patrick". I remember sitting at my desk just starting at that picture and trying to decide if I was looking at my son.

The next few days were a bit of a blur. After a thoughtful, prayerful day, my husband and I decided to send our profile to be shown to Patrick's birth family. I'll admit, I was scared to death. I knew then that my life as I knew it was over if we adopted this little boy. I couldn't even imagine how I'd do it. And yet, I was surprised to find myself grieving for him, as though he were already my own. I spent the next few days bouncing between fear of being chosen as Patrick's mom, and at the despair at the idea of not being chosen. We knew that whatever decision was made, we could never be the same.

On Friday, we received word that Patrick's birth parents had chosen us as parents, if we were willing. We finally started to be able to talk to hospital staff so that we could understand his medical condition. But the more we talked, the more we knew the information we were getting was still only a part of the story. So, Saturday we flew to Michigan to meet him, his family and his doctors.

That first meeting was overwhelming.

At last, we began to understand the extent of Patrick's medical needs. And it was so much bigger than we'd ever imagined.

Patrick's gastroschisis had been discovered in an ultrasound. Basically, his abdominal wall had not closed completely, allowing his intestines to form on the outside of his body. Most of the times, this can be corrected after birth. But, by the time a follow-up ultrasound was done, the intestines were no longer visible. Although no one can say for sure what happened, the doctors' best guess is that the intestines twisted (called a midgut volvulus). That twist pinched the main artery that feeds the intestines. With no blood supply, the intestines died, fell off, and were reabsorbed.

Because all of this happened in the womb without intervention, the loss was massive. Patrick was left without any of the vital portions of intestine that absorb nutrients. He had only the part of small intestine that connects the stomach to the rest of the small intestine (duodenum), just 15 centimeters long, and a fraction of his colon. Unable to get nutrition from food, Patrick is now fed entirely by IV, a method called Total Parenteral Nutrition (TPN). TPN has it's consequences, though. It causes swelling and scarring in the liver that can lead to liver failure. And, because it requires an permanent IV, blood infections (sepsis) are a common if not constant problem.

Most short gut patients are left with some intestine that can be rehabilitated and adapted and can eventually provide at least partial support. They can gradually wean away from IV feeding and be fed through a g-tube or by mouth. But the doctors told us, as they'd told his birth family, that Patrick did not have what was needed to sustain life. He could not be weaned from TPN with the anatomy he had.

The only possible treatment option would be an intestinal transplant, a procedure so new and dangerous that it is only done at a handful of hospitals around the country.

Still, his doctors said that they felt that Patrick was stable enough to be discharged from the hospital soon. Perhaps as soon as arrangements could be made. Of course, those arrangements required legally formalizing the adoption, moving Patrick home to Utah, and getting training, equipment and supplies to give TPN at home.

With the full weight of the actual diagnosis sitting on our shoulders like a restless boa constrictor, we finally got to go meet Patrick. We scrubbed in then were led through the maze of the NICU. And then, there he was.



Tiny. That was what I remember thinking when I saw him. He weighed just 5 and a half pounds and looked like a little ball topped with a pile of black hair in his crib. He was surrounded by monitors and other medical equipment but he, himself, looked so healthy.

Holding him helped me appreciate how fragile he was. Besides all the monitor wires, he had a PICC line in his arm had a tube in his nose and one coming from his abdomen, both draining fluid from his stomach and gut. Getting all of this situated so it neither pulled nor spilled was a feat I didn't accomplish on my own for several days.

We stayed a few hours, visiting with his birth family and his nurses. By the time we made it back to the hotel room, it was very late, and I was overwhelmed. I just sat down and cried. All I wanted was to go home and go back to my life. I didn't feel ready for any of this. Thankfully, we'd planned to stay a few days before we made our decision. By the end of the next day, I'd completely changed my mind.

Patrick's nurses told us that Patrick was a terribly fussy child. We never met a fussy Patrick. As long as we were there, he was calm. Perhaps he had been lonely or perhaps he had been scared. When we got there, I think he knew a family had arrived at last. No child should be asked to go through what he had ahead of him without a mommy and daddy to love and take care of him.

All that day, his kind nurse answered our questions and let us do all of the hands on care possible. Many more doctors came to talk to us. Some were ecstatic at the idea of Patrick finally having a permanent family. They told us about other Short Gut patients they'd cared for. Others were grim about his prognosis and quality of life. The surgeon who had operated on him at birth was the most honest, but also the most pessimistic. He told us that if we proceeded with the adoption, we would most likely spend at least half of his life in the hospital. We'd be regulars in the E.R. Our relationship would be strained. And, even with our best efforts, Patrick only had about a 50% chance of living to age 2.

We heard all this news, though, with little Patrick snuggled up in either my or my husband's lap. Once you picked him up, you were committed to at least several hours. And in the quiet times, I sang to him. I could tell the lullabies he liked because his breathing steadied out on the monitor. His sweet spirit filled the room. And by that evening, my mind was set. I was in love with Patrick.

Monday seemed like more of a technicality. We confirmed insurance coverage, found a GI near home, met social workers, talked to more doctors.. and then we held a small "family conference" and asked Patrick his vote. We took his contented smile in his daddy's arms as a yes and signed the paperwork.

Patrick spent the next 2 weeks in that NICU while the courts worked on the adoption. I had nowhere else to go, except my hotel room, so I stayed with him from 7 a.m. till well past midnight most days. Most days were peaceful. Some days were hard. Surgery days were the worst. But, all that time helped me learn to understand the doctors when they talked, and it helped me learn to take care of Patrick.

Then, with custody finally granted, we flew him back to Utah where he spent another 3 weeks in the NICU at our local children's hospital. Most of this time was spent making arrangements for medical supplies, homecare, nursing, follow-up visits and all the rest of the care he'd need. I still stayed by his bedside and did all the care they'd let me do. When the time came, the doctors were quick to give the go ahead for us to go home. I'd proven I knew how to care for him.



As we discussed discharge, Patrick's neonatologist gave me some excellent advice. He said to know that it usually takes several weeks to a month to develop a routine. And then, he said that when I felt discouraged, I should be patient with myself, knowing the routine would come only with time. I found that to be true not only with that first discharge, but every time that something changed with Patrick's health. Now when things change and start to feel hard, I just remind myself that we'll need a few weeks, but that soon we'll find our "new normal."



Eventually, discharge day came. A nurse brought Patrick's TPN, lipids, add-ins and pumps to us at the hospital and taught us how to use syringes to add medications to the TPN and then how to program pumps and connect it. Then, they took us to the car and we brought Patrick home.

It did take several weeks and help from nurses, doctors, insurance case managers, a patient dietician, and more to teach me all I needed to know. Caring for Patrick meant changing TPN and tubing every day, cleaning and caring for his g-tube, changing ostomy bags when they leaked, feeding him every 3 hours including through the night, charting his stool losses in proportion to his weight and giving appropriate replacement fluids, and more. But it became routine and we kept him safely at home for 6 months without any complications.

That April, we flew with him to Seattle Children's Hospital where he was evaluated and listed for an intestinal transplant.

But as promised, that good health could not last forever. We soon learned what the doctors had warned us of. Patrick's first summer he started to have line infections. The antibiotics allowed different infections to grow. It was a vicious cycle. One moment he'd be fine, and in a few hours have a raging fever, and by the time I'd get him to the E.R., he'd be in septic shock. The infections would grow in his central lines, so they'd have to be removed and replaced and soon placing IV's and drawing labs became a difficult and tortuous part of every morning.

During this time, I truly did live in the hospital, spending nights at home only on weekends whenever Patrick was hospitalized. Patrick and I became close friends with some of the nurses and doctors. My husband's evening and weekend visits kept me sane.



Eventually, all the infections led to a yeast infection so resistant that it required the maximum dose of a very dangerous drug. It made Patrick cold and sleepy and otherwise so miserable while it ran that I spent each day holding him through the 4 hour dose. Then one day, his little body couldn't take it anymore. He got very sick and agitated, and then oh so still in my arms. His heart had stopped.

Luckily, I was holding him and could call for help. CPR was started right away, a code was called. It took 15 minutes to revive him and then another 2 weeks in the PICU before his body started to recover.

Miraculously, Patrick's brain suffered only very little damage. And he was so young when it happened that his brain will be able to adapt to overcome most of the effects. He sometimes has a hard time controlling the muscles on his right side, so it took him longer than most kids to learn to crawl and to walk. He wears a brace and is in physical therapy. He also receives speech therapy, because the damage is in the part of the brain that produces language. But, with lots of help and lots of effort, he is improving and although he is delayed, is progressing at a normal rate.

Life has been calmer since Patrick was discharged that August. He had one more major surgery to reconnect his small and large intestines. And he had a handful of line infections. Eventually, we found a way for Patrick to use ethanol locks in his central line, basically cleaning the inside of the line by filling it with alcohol for a few hours, and then removing it. With ethanol locks, the infections stopped.

Now, our biggest problems are broken lines. Ethanol makes the central lines more fragile and as an active toddler, Patrick often catches them. We still visit the hospital at least monthly to fix broken central lines, but most often get to come home the same day.

Patrick's intestines are quite unhealthy and getting worse with time. To keep him from throwing up constantly, we now use his g-tube to drain excess bile from his stomach instead of feeding through it. Patrick enjoys eating, but can only eat very small amounts and only limited foods, or it will make him sick. As a complication of his short gut, Patrick's developed food allergies that have further restricted his diet.

But these things have also become routine. To us, they are normal.



Patrick is a very happy two-year-old. He is content with his life. He loves Elmo and cars and music. He's a thrill-seeker who can't get enough of slides and wagons and other rowdy things. He's a people person, constantly making me stop and talk to the strangers he meets. He has an eye for a friendly face. He yells "Hi" at the top of his lungs whenever he sees another kid. He loves to be read to. He makes me turn on music while I cook so he can dance. He's stubborn as can be. And he has a very tender and loving heart.

We don't know if the transplant call will come before Patrick's health starts to fail him again. His liver is scarred from the TPN. Any day he could pick up an infection that we can't treat. And all of his lost central lines have started to lead to lost veins, so we never know if this line will be the last they can find a vein to put a line in. We don't know if the call came if it would be the solution, or just the start of a different kind of problems.

Those are the things I don't often let myself think about. Instead, I push the scary thoughts away as often as I can and focus on what we have now.

I've learned to do things I never imagined. I never imagined that caring for IV tubing would be second nature to me. I barely have to think about it anymore. I never imagined doctors and nurses would ask me for advice on technique and treatment, or even more prefer for me to do it. I never, ever imagined I'd be teaching THEM.

I've learned to handle syringes in a moving car. I've learned to change IV bags in the dark. I've learned to use sign language to communicate basic needs. I've learned to restrain a child with a pillowcase and my legs while keeping my gloved hands sterile. I've learned to pack for and navigate airport security with two days' of medical supplies, including TPN. I've learned to recognize that "mom, my tummy's sick" look before disaster strikes. And should I be too late, I've learned to contain and clean up vomit in a public place without crying. I've learned to prevent the ugliest diaper rash. I've learned to safely navigate a playground while connected to my toddler by just 10 feet of tubing. I've learned to answer what people should have asked, instead of getting angry at what they actually said. I've learned to rely on family and friends and to trust them to do things they never thought they would do. I've learned to see pain in another parent's eyes. I've learned that I'm only alone if I choose to be.

Most of all, I've learned to be happy, even when sometimes circumstances should dictate otherwise. Patrick has taught us that you can be happy, even when things are hard.

I have learned more about life, about joy, about faith, about hope, about determination, and especially about love since meeting Patrick than in 29 years of life before.

He has taught us to live life to it's fullest, RIGHT NOW. Since we never know what tomorrow will bring, whenever a memory-making moment is offered today, we do all we can to take it. Doing so with all of Patrick's medical equipment isn't easy. However, this has led to some marvelous adventures and a wonderfully thrilling spontenaety in the midst of a life of structured chaos.

After all he's been through, I firmly believe that Patrick chose life. He chose it knowing his body would be limited. And so, I feel it's my priviledge to do all I can to let him live his life to the fullest.

And mine, too.

One day, my phone may ring again. One day, our lives will change forever. Again. And it will all be ok.

Again.


You can read more about Patrick and Emily at Patrick's Organ Transplant blog. Emily also runs an online support group for families of kids with Short Gut.

Born of My Heart

by Brandi from the blog Born of My Heart.

Brandon and I (Brandi) tried to conceive for five years. Years of doctor appointments, infertility drugs, and negative preganancy tests were just too much to handle. We started praying about adoption. We began to look into agencies, and we became foster parents. The next two years flew by. We had two failed adoptions that were both heartbreaking, so we decided to put adoption on hold for a while.

That's when I read my email. A wonderful woman, whom we had worked with in adoption before, asked us to view the profile of a special needs little boy. We did. We saw his picture and fell in love in what we knew was our son. ~~~There is defiantly more to this story but that is another story in and of itself~~~

Joshua Matthew Lee became our son on September 17, 2009. He had a tragic little life and needed lots of love. Matthew (as we call him) was born on time, perfectly healthy! He went home to his first adoptive parents at two days old (my birthday) and was their miracle boy. At three months of age Matthew was not meeting his milestones. He was not making eye contact, had very little head control, and did not smile. An MRI then showed what would become the beginning of his diagnoses. Matthew has Agenesis of the Corpus Callosum, Agenesis of the Septum Pellucidum, Septo Optic Displaysia, Cortical Visual Impairment, Optic Nerve Hypoplasia, Epilepsy, Cerbral Palsy, Low Tone, Photophobia, Bilalteral Schizencephaly, and global developmental delays.



Matthew's first adoptive family did not feel they could parent a special needs child. After seven weeks in private foster care, we brought Matthew home. Our sweet boy is a miracle. We were told he would not smile socially~he laughs. We were told he would never make eye contact~~he tries. We were informed he would never be mobile~~we have video of him attempting to crawl. Matthew is now seventeen months old. He still has little head control. He has 100+ seizures daily even with two anti seizure meds and the Ketogenic diet. Developmentally he is still an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart.

Little did we know, but eleven days after we brought Matthew home, his sister was born. Lillian Autumn Grace was born anywhere between 28-32 weeks gestation and addicted to cocaine. Her birthmom relinquished rights and Autumn (as we call her) was available for adoption. We knew about her, but were not in a position to adopt so soon. We prayed for her. She was a rockstar. She stayed just over six months in the NICU before finally being discharged in March. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. Her legs are "deformed" and her feet are clubbed. She has undergone three surgeries to correct the strictures that were in her intestines, and has sailed through them all.



In March our prayers were answered, and we knew Autumn was our daughter. We became a family of four in April 2010. Autumn is cognitively intact and is blossoming. She is still quite small for her age, but is crawling everywhere. She will not be able to correct the deformity in her legs or her clubbed feet and will never walk. She will not let that hold her back. Next week she turns a year old. We are constantly reminded at just how beautiful and fragile life is when looking at our blessed babies.



We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.

The Gifted Child

I am scared. Terrified.
Beside my self, most of the time.


I believe this to be the way every mother to a special needs child(ren) wakes up in the morning.

There are some days that derail this train of mine. We can be moving and shaking. We are heading in the right direction, with time to spare and then......

BAM

The wind gets knocked out of me, and I start back at the beginning.

Raising a special child takes guts! You are not only getting rid of the monsters under the bed, but also the monsters in the doctor's office. You face things not many other people could even imagine, and if you're lucky you do it wearing a clean shirt with brushed hair!

As an adoptive parent, I have often felt inadequate in terms of my children. I wonder if I am ever good enough. Do I make the right medical decisions? Do I make the right decisions at all? After a long talk with a great friend and a hot cup of coffee, I came to realize this is not a fear I have as an adoptive parent, but a fear I have as a parent.

I cannot tell you about how we felt upon hearing about the diagnoses. We knew the diagnoses the moment we knew about our children. I cannot ponder what decisions I made while I was pregnant that may or may not have affected my children. They were both six months old when they came home.

What I can tell you; however, is that our children are brought to us for a reason. I never imagined raising a special needs child, let alone two (we are adopting again within the next five years~~so three). I did not think I was smart enough, powerful enough, loud enough. What I know is that looking into the eyes of your child and feeling their warmth and goodness radiate is what being a mommy is all about. They show me everyday what it is like to push harder, to go further, to be louder. I do not raise them, they raise me!

But when I wake up to a world that is cold and full of misunderstanding, long glances, and uncomfortable silences I remember this:



"Every child is gifted. They just unwrap their packages at different times." -- unknown

Charlotte's Story

Charlotte was born on June 30, 2005 after a physically easy but emotionally difficult pregnancy. She was our first child and had been diagnosed at about 22 weeks gestation with partial trisomy 16 and partial monosomy 9 after a few few "funny" findings on ultrasound and finally an amniocentesis. This meant she had an extra piece of chromosome 16 and was missing a part of her 9th chromosome. This was a very rare finding--there can be any number of unique chromosome arrangements and the doctors were unable to find any other cases like hers in the literature. We were told I would most likely miscarry before birth, or that our baby girl may survive a few moments. We were also told that this was the best case scenario, because otherwise she would "stare at the ceiling until she died" and never recognize us or have any quality of life. We also found out my husband is a balanced carrier for this translocation.

Despite this very grim prognosis and the many opinions we received that termination would be best for all involved, we chose to carry to term with the hope we would get a few moments with our first child. During the weeks that followed we constantly reminded one another that we had chosen to place our baby and ourselves in God's hands.

When she was born--much larger than expected at 6 lbs 5 oz and beautiful beyond description--we were thrilled when she cried and breathed with very minimal intervention. She stayed in the room with us after her birth and was passed from family member to family member for hours. When it became clear she wasn't going anywhere, the nurses came in and we gave her a bath right in the room.

Three days later we brought her home with the warning she would likely be with us only days.

Charlotte was a sleepy baby and had to be woken up in the night to eat. She ate well from a bottle but unfortunately did best on Nutrimagen, an expensive and smelly formula. We were thrilled when we were able to switch her to soy. She was very prone to terrible diaper rash and grew slowly, but we were happy for each day we had with her.

As the days turned into weeks, we started with the specialists. She began seeing Early Intervention at 3 months for physical therapy and also saw Cardiology, Orthopedics and Genetics in addition to frequent trips to her Pediatrician. After spiking a very high fever and being admitted to Primary Children's Medical Center for the first time in October 2005 we found out she had kidney reflux and was on antibiotics her entire life to prevent infection. Soon after she had an incident of respiratory arrest while at Grandma's and after being worked up for days in the hospital, she came home on 24 hour oxygen for apnea and pulmonary hypertension.

Charlotte was growing. She smiled and giggled but didn't make eye contact or reach for toys. She had been born with trigoncephaly, which meant her forehead had fused into a point. We had been told by the Neonatologist that this was because she had no frontal lobe to make her skull form correctly, which, he pointed out, was the center of personality. Charlotte's Orthopedist who casted her crooked foot asked us what we were doing about her head, which we said wethought was just a cosmetic issue. He sent us right across the hall to a surgeon who suggested an intense 8 hour surgery. He explained that her brain (which we thought was nearly non-existent) was unable to grow with her skull sutures fused and it would be in her best interest to have the sutures opened to allow for optimal growth and to reduce the risk of seizures and other problems. I was so happy to have a doctor looking out for Charlotte and her future, and we decided to go ahead with the surgery.

When Charlotte was 8 months old we shaved off her beautiful dark hair and she underwent a bilateral orbital advancement. It was a long surgery and was scary, but she did well and went home a few days later. A week after returning home from the hospital, on a Sunday morning, Charlotte reached for a toy for the first time, and days later lifted a baby cookie to her mouth and sucked on it. It was incredible to see her progress after the surgery. She immediately began making eye contact and smiled much more often. She was a different baby girl.

Charlotte did well for the next year, but her growth dropped off quite a bit. Doctors started suggesting a feeding tube which we fought. We were afraid she would lose her ability to eat and she loved to eat. Finally after an episode of reflux and pneumonia we decided to go for the g-tube and Nissen procedure. It took months for her to be healthy enough to place it. We will always wish we had done it earlier. After a difficult surgery and hospital stay we began using her g-tube to feed continuously at night. She continued to get her favorite foods during the day as well. Charlotte again grew by leaps and bounds. Her hair grew like crazy and she had energy to roll and play and laugh. Looking back on pictures of her before we placed the g-tube we are broken hearted. She looks so thin and sick! She was just not able to eat enough to meet her needs. We were also much more likely to get her full medication doses through her g-tube and were able to keep her hydrated when she got sick and refused to eat. There are times I still wish all kids had g-tubes.


Life with Charlotte fell into a predictable pattern over the next months. There were fevers and middle of the night rushes to the Emergency Room. There were many therapy appointments, minor surgeries, the occasional respiratory emergency and big scare, and so many triumphs. Charlotte was happy. She had a great sense of humor and a strong personality. She loved spending time with her family and big dogs. She had her favorite toys and her definite dislikes. However her health was always fragile. I hated going to cardiology appointments as I knew her pulmonary hypertension was slowly worsening and there wasn't much anyone could do about it. I hated having to turn up her oxygen during colds and seeing her struggle. I hated taking her for haircuts, because for some reason despite all the other awful things she had to endure, she really could not stand having her hair cut.

Charlotte got a little red wheelchair for her 3rd birthday and started preschool later that year in 2008. She had learned to sit up on her own and was clearly quite proud of herself. She was learning to wear her hearing aides and seemed to be understanding a few signs. She was affectionate and happy. She also had a new baby sister Ella, who was born healthy in October 2008. It was frustrating but kind of fun to watch Charlotte go through the usual jealousy that comes with a new baby. She would glare and refuse to look at Ella, throw fits when I fed her and try to bite Ella if she was able to get close enough. Within a couple of weeks she got used to having her around, but we still had to watch out for the biting.

That winter we found out Charlotte had aged out of the recommended period for Synagis, a monthly shot that helps prevent RSV. She had a hard winter, and was often sick and missed a lot of school. It was heartbreaking to see her losing some of her skills she had picked up over the last few healthy months but we held on to the hope that spring would come early.

In February 2009 Charlotte spiked another fever and her oxygen need went up. We went to the ER after much prayer and she was diagnosed that night with RSV. I was actually relieved that it wasn't heart failure. Over the next few days Charlotte did not improve and soon had pneumonia as well and was in the ICU. On Saturday February 21 we called our families together and everyone came to say goodbye to Charlotte. It was like an echo of her birth day--the family all together in a hospital room passing around a now-much-bigger baby and giving her kisses and crying over her. She passed away very peacefully surrounded by those she loved and who loved her.

Over the next few weeks I felt Charlotte so close and I was surprised at how full of light I felt. It was a special time. However after awhile the grief set in and we worked through it as a family and on our own. How grateful we were to have our little Ella with us and the support and love of our families. Grieving is a long and possibly endless process but knowing Charlotte will always be a part of our family helps us cope with the loss of our darling girl. We miss her terribly but talk about her often and her little sister recognizes pictures of her, even though she was only four months old when Charlotte passed away.

We also began to consider how and if we could continue to grow our family. Ella had been a happy surprise but doctors estimated our risk for having another child with an unbalanced translocation between 12 and 25%.

We began exploring our options, and decided to make a decision in February 2010. In late January I was asked by a woman at work if we were interested in adoption. I said yes and within weeks we had met an amazing young woman who was expecting a baby girl in May. The weeks flew by and Ava joined us on May 5 2010. Two month earlier on March 5th, I had discovered I was also expecting again, despite the fact we had taken precautions. I also felt fairly strongly that this baby was not healthy.

Our fears were confirmed and I am expecting our 4th daughter on October 20 2010. She has the same chromosomal abnormality as Charlotte. She also appears much healthier than Charlotte did on ultrasound, does not have trigoncephaly or any heart issues at this point, and her name is Lily. Although we know anything could happen, we know there is a good chance Lily will be with us for more than a few days.

We have many fears. We always wondered how we would ever handle Charlotte's appointments and hospital stays if we had other children, and now we have two other very young girls. We are not looking forward to watching another child suffer through medical procedures and are praying hard that Lily will not suffer from pulmonary hypertension and not need 24 hour a day oxygen. We also look forward to using all that we learned while Charlotte was with us to help Lily reach her fullest potential. We are excited to have another very special spirit in our home, and have to believe that this is God's plan for our family, and an extension of that commitment we made years ago to place our baby and our lives in God's hands. In the end if we have faith this experience will be for the betterment of all of us. Charlotte gave us so many gifts. We go in this time with much less sadness, much more hope, and the wisdom, experience and joy that Charlotte gave us.

My Heart Shall Not Fear

The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?....

Though an host should encamp against me, my heart shall not fear...

Psalm 27: 1,3

The story of a child with Tourette Syndrome by his mother, Melissa, the Multi-Tasking Mama.



We have three children. JC is 15, J is 12 and M is 11. J and M live at home with us in Martinsburg, WV. JC currently lives in a residential treatment center in Philadelphia, PA.

JC is my husband’s son from his first marriage. We fought for two years to get custody of him and finally did so in March 1999. He had just turned six that same month. His biological mother's rights were terminated due to abuse and neglect.

We knew when JC came to live with us that he had behavioral issues. He had been in kindergarten when he lived with his biological mom and had been suspended for violent behavior. We thought that with psychological counseling these issues would be resolved. We did not know then what we would be up against.

When JC first came to us he continued with his acting out at school. I quickly became an IEP (Individualized Education Program) expert to get him access to the services that he needed, including behavior plans, social skills classes, etc. I also volunteered at his school two days a week so that I could be there to help his teacher.

When he was seven we noticed that he continually made this throat clearing noise. We had him evaluated for allergies, etc. His eyes would blink, his nose twitched, his legs would flail out, all seemingly involuntary. A doctor finally did an EEG and told us that JC had Tourette Syndrome. This, coupled with the trauma he had endured in his early years, explained the difficulties he was having at school. Learning difficulties and ADHD are frequently comorbid disorders with a primary diagnosis of Tourette’s.

Unfortunately, JC’s behaviors escalated both at school and at home. He was very physically aggressive with myself and our younger boys. He had a counselor from the day he came to live with us but we were all at a loss of how to cope with his violent outbursts. He also had issues with sleep - wetting the bed, night terrors, that type of thing.

When he was 10, we finally gave in and put him on medication. We had resisted because of all the scary side effects. The meds really did not seem to help, they had to keep being changed because on one med he was lethargic and the next med he was on a high. When the psychiatrist put him on an antidepressant, Jason attempted suicide. This led to his being diagnosed with bipolar. He had two inpatient psychiatric hospitalizations and too many outpatient partial hospitalizations to count.

The straw that broke the camel’s back so to speak was when he “attacked” his principal with a golf club and ran away from the school. He was only 10 ½ years old but the school still insisted that law enforcement become involved. The end result of their involvement was that in the 6th grade when Jason was 11 he was removed from our home by a judge’s order and placed in residential treatment in December of 2004.

This has been the most difficult time of our lives. We live in a rural area that afforded very little options for residential treatment. For the last four years, JC has lived at least two hours away. My husband and I travel to see him once a month and participate in family therapy sessions by phone due to the distance.

His removal from the home has elicited differing reactions from our two younger boys. The older one has had to work through a lot of resentment towards JC for the way he was treated. Our youngest was more affected by the absence of his oldest brother than the past. They have both had to be in counseling to address the impact all of this has had on them and our family as a whole.

My husband had a really difficult time at first because he felt guilty. He had divorced JC’s biological mother in 1995 due to her infidelity and returned to WV from another state. He had to work through feeling like JC wouldn’t be “this way” if he hadn’t left. Once God healed him of that, he was able to play a much larger role in helping me cope with having a special needs child and with making sure that our other boys didn’t slip through the cracks.

I coped by educating myself. I read every book on Tourette’s, bipolar and adopting a child with a history of abuse. I also attended every IEP, special education and advocacy conference I could get my hands on. I think that knowledge is power and in order to be the best mom I can be I needed to know how to advocate for him.

JC’s formal diagnoses’ include: Tourette Syndrome, Bipolar Disorder, ADHD, Reactive Attachment Disorder, Post-traumatic Stress Disorder. He has been on medications including Medadate CD, Abilify, Trazadone, Zoloft that were ineffective. His current medications are Clonidine (for his tics) and Depakote (for mood stabilization). He has been stable on those meds for about two years.

After JC was living in residential care out of our home we became a very isolated family. We were ashamed and felt inadequate that the judge had placed him elsewhere - even though all the social workers and even the judge himself commended our parenting. It was a very difficult situation to explain to people at church, etc. But one Saturday I was at my youngest son’s basketball game and there was a lady obviously having difficulty with her older son. My heart just resonated because I had been there. I had been called a B*&^% in public, 10 year old having a temper tantrum and having to leave an event. I went over and introduced myself and we (and our families) have been great friends ever since. She and her husband were the only people who understood what we were dealing with (until I became a blogger and discovered a world of support).

JC is in a residential treatment center about three hours from where we live. We write to him weekly, speak to him on the phone and visit him one time a month. Because of abuses perpetrated (I hate that word BTW) to his younger brothers the judge will not allow him to return to our home when he is discharged. So, his social worker and I are working to find a group home/foster home setting that is closer to home and where we can have increased visitation with him.


JC is very artistic. He is excellent at drawing and creating things out of legos. He especially enjoys origami. He likes music - Christian rap. He also plays video games, typical teen boy stuff. He is not much for physical activity. He also loves animals and is capable of being very loving and gentle with pets. He is a tall, handsome guy who looks a lot like his Daddy and he is so brave. He is doing what he needs to do to be discharged (it took him awhile to get with the program, so to speak) and we are so proud of him.

JC wants to be an architect when he grows up and says that he wants to live in NYC. We believe that he can be anything he wants to be and as his parents, no matter his address, we will support him in his dreams.

Our family is redefining what “normal” is. We are no longer ashamed and embarrassed. We would rather tell our story so that we can help others going through this. Children with emotional disorders (particularly attachment problems during the adoption process) exist and people need to know there are people out there who pray for those kids and their families. My husband and I are some of those people.

My advice to other parents is don’t isolate yourself. Advocate for your child - if the school system is being difficult, get an attorney. Attend every meeting (even if it is by phone) that has anything to do with your child and their treatment. Take notes, keep copies of EVERYTHING.

The reason I am so excited and supportive of KIDZ is that something I wish I had was a support group. As a parent of a child with behavioral issues, you feel very isolated and alone. Some friends didn’t understand and would think we weren’t parenting or disciplining him adequately. You have to learn to ignore that, pray and just do the best you can. No one knows how hard it is unless they have been in that situation of parenting a child that is atypical in anyway.

The book, The Bipolar Child, was very helpful. Also scriptures including Psalm 27, Psalm 68:5-6 and Isaiah 58. Cafemom.com has great support groups for mom’s with special needs kids- I have made a lot of friends on that site.