Ethan, 13 (Wasilla, AK) | FASD, Reactive Attachment Disorder

ETHAN, 13 (Wasilla, AK) | FASD, Reactive Attachment Disorder

written by his mom, Leah

photographed by Laura Stennett Photography

This story may be a little different than the rest, for the sole fact that I didn’t have the honor to carry Ethan inside of me, nurture him, and love him from birth. I saw a quote the other day that said, “I don’t have a step child, I have a child of my own that I just met a little later in life….”

When you look at my son, you see a 13-year-old handsome, smiling, tall, amazing young man. I doubt you’d see his disability. You won’t see what he’s fighting, you won’t see what he deals with every day, and you sure won’t see the demons he battles before he closes his eyes at night.

Ethan was 6 when I met him. I was dating his father. Ethan always seemed a little angry, and his dad told me he’s had an IEP since he entered the school district. For a couple years, I’d tend to Ethan as a step mom, and then we moved in together and he wanted to call me mom. His anger was getting worse, I always knew there was going to be residual feelings of abandonment from his mom leaving him…but this was far beyond that.

We started the long, long journey of counseling. Every time we’d bring something up, counselor after counselor would say, “I think you should get him tested for Fetal Alcohol Spectrum Disorder – FASD”. I brushed it off, as did my husband. There was no way that Ethan had this, although his mother left him, my husband said there was “no way she’d drink while pregnant and hurt him in such a way.”

We met another counselor. It was always “His anger and resentment is too much; I don’t think I can help him; there are some underlying issues here that you need to figure out’.

He was diagnosed with ADHD, Depression, Bi-Polar Disorder, Coordination Disorder, Anxiety, Dyslexia, and every time we got one diagnosis another would come along that didn’t make sense.

In August 2013, we finally made the choice to take Ethan to Assets in Anchorage, an FASD testing facility. Several months of testing was done. We saw a general care doctor, an occupational therapist, a speech therapist, we had a neuro-psych evaluation done, and then all the doctors had to come together for their results. They had to send his brain scan to the University of Washington, along with the structure of his face.

That December we got a phone call – “We’ve reached a diagnosis, we have an appointment scheduled for January”.

Waiting that long was horrible. My husband and I still swore up and down that this couldn’t be. Although, when I tried to cancel the diagnosis process, the coordinator of Assets called me and told me – “Don’t…”. He had received Ethan’s birth records where the doctors noted he was suspected as a polysubstance baby. What this meant was that Ethan was exposed to 2 or more drugs that can cause impairment or distress. These can be anywhere from alcohol, nicotine, marijuana, meth, or even prescribed medicines. So we continued.

In January 2014, we sat in a big office room, with several empty chairs. My husband I sat there waiting, and waiting, and waiting. The coordinator came in, along with someone referred to as a ‘parent navigator’. He started to talk about the diagnosis process, and saw my husband and my eyes glued on him, not blinking, just waiting.

He stopped, and said ‘All right, I’m just going to give you the news. Ethan has Partial Fetal Alcohol Syndrome. pFAS”. My world came crashing down right before my eyes, a box of tissue was handed to my husband and I as we cried, and cried and cried.

pFAS – WHAT?? What is that?! How? You mean to tell me everything my son is going through was preventable?! I could handle depression, I could handle coordination disorder, I could handle anxiety, shoot I can even handle ADHD and Dyslexia…but a 100% preventable disability? pFAS means that Ethan has every sign of FAS except the size. On a scale of alcohol related disabilities, the most severe is FAS, followed by pFAS. His prefrontal cortex is shrunk down to 1/3 the size of a normal brain…not only that, but his ‘thinker cells’ in his brain were killed, and replaced with ‘mass cells’ that do not fire off the way a normal brain does.

This is a 100% preventable, non-curable, lifelong disability. It will not go away, it will never go away. Then, another blow – your son also has Reactive Attachment Disorder. WHAT?! Out of all of the attachment disorders, REACTIVE attachment disorder? Literally the worst one out there. I fell into a pile of jelly and just cried and cried and cried. I held my husband and my husband held me…we walked out of there and said – our son will not be a statistic, and he will thrive and excel.

Reactive attachment disorder is one of the few disorders that can be applied to infants. It is a disorder caused by a lack of attachment to any specific caregiver at an early age, and results in an inability for the child to form normal, loving relationships with others.

We sat down, and spoke with Ethan’s biological mother. Along with the alcohol, she was taking anti-depressants and anti-anxiety meds. Those mixed into a disaster for Ethan.

Ethan is now 13 years old, on the outside it looks like we have the perfect life. But what people don’t see is the constant walking behind him. Until this year, my 13-year-old son could not be responsible for wiping himself after he went to the bathroom. Until this year, I could not give him multi-step instructions and expect him to follow them. Until two years ago, the rages he would break into, and the violence he would put out, was something that thankfully most parents won’t ever have to deal with.

These are just a few of the things he’s given me permission to tell you all about. What he doesn’t give me permission for, and what no one sees, is a whole different story. Ethan wanted to do this photo shoot to bring awareness. He was also asked to be on the brochure for FASDx to bring awareness. We both want people to know to not judge a book by its cover. Don’t think just because he looks ‘normal’ that he’s not fighting something.

What I’ve seen in these last few years is a child who is emotionally so many years younger than his age, but is fighting battles grown men would find challenging. I see a boy who is not ‘supposed’ to love people, form bonds, form attachments, be kind, be gentle, and be patient do just that and then some. Who looks for the safety of others, and looks at the feelings of others before he even looks at his. He experiences pure joy just by watching his family love each other. I see a boy who’s not supposed to recognize his feelings stand back and say ‘you can’t hurt me anymore’, and ‘I will not stand for it’.

Ethan fights every single day to achieve some kind of normal, but falls short a lot of the time and beats himself up for it. Because he only wants to be like the other kids, and to have his brain work like theirs.

You never know what is going on with a child that you deem “normal”. You never know what that parent is going through on a day-to-day basis. You don’t know how long it took that mother and that child to get out of the house to even make it to the store to just get milk for cereal. I made it my mission to educate mothers, and help them to make the right decisions. I have been to seminar after seminar for FASD, I have sat in with classes for the head coordinator for FASD in the state of Alaska. I have had her come to my son’s school and watch him to see how we can help more and what we can do. I have spoken in meetings, and spoken in events to educate mothers who think even one glass is okay to drink.

I will wrap this up with a few educational tips I always try to start with. The one glass of wine you drink, will absolutely and immediately kill brain cells on the brain your child is forming. The glass of wine that you drink will stay in your baby’s system much, much longer than it stays in yours. You have a fully functional liver to process the alcohol. An unborn baby does not. Everything you drink goes to your baby – everything. Some women do drink a few glasses of wine, and their babies come out with no lingering signs of an FASD – others just have those few glasses of wine and their babies are impaired for the rest of their lives.

Caregivers who wish to learn more about FASD testing can find more information here: https://www.facebook.com/fasdxservices/

Caregivers of children with an FASD diagnosis can request to join these private Facebook groups to connect with others in similar situations: 

Facebook Group for parents of FASD teens and adults

Facebook Group for parents of FASD young children

Facebook Group for parents/caregivers and those with an FASD

Kailynn, 6 (Wasilla, AK) | cerebral palsy

KAILYNN, 6 (Wasilla, AK) | Cerebral Palsy

written by her mother, Italia

photographed by Laura Stennett Photography 

Finding out we would be expecting a baby girl was one of the most exciting yet nerve-wracking times of our lives. After the initial shock wore off, we began imagining what her life would be like: what her interests would be, which sports she'd like best, if she'd look more like me or my husband, etc.

My pregnancy was smooth sailing besides the everyday morning sickness. I was scheduled for an induction on June 12th, but my water broke the night before. After fourteen hours of labor and 45 minutes of pushing, we were blessed with our beautiful baby girl on June 11th, 2010.

For the first few months, everything seemed fine, but when Kailynn was around four months old we noticed she wasn’t reaching the milestones she should have been, such as holding her head up and rolling over. Her body would go from floppy to stiff and we noticed her eyes would cross or one would turn inward.

When we took her in for her checkup and told them our concerns, they referred us to a pediatrician. From there we were referred to a neurologist, who then diagnosed Kailynn with cerebral palsy (CP).

Cerebral Palsy is a congenital disorder of movement, muscle tone, or posture.

Once we found out she had CP, we went about finding her a good eye doctor to figure out what was going on with her eyes and when we did Kailynn was diagnosed with infantile esotropia, which is inward turning of the eyes, basically. Once she was diagnosed, we then took the steps to correcting them. We started with patching the eyes a couple times a day and when that didn’t work we decided to correct her eyes with the surgery offered.

Before we were able to get Kailynn's eyes corrected, an MRI had to be done to make sure there wasn’t extra fluid in her brain. There wasn’t any fluid so we were then able to have her eyes fixed! Shortly after that, she was fit with a pair of glasses for astigmatism in both eyes. After we had her eyes corrected, we started getting her into physical and occupational therapy. She started to progress and we began to learn what we needed to do at home to continue Kailynns’ progress. We did lots of at-home work-outs, basically :)

Recently this year, we tried Botox (Botulinum toxin) in her ankle and calf, which helped relax the tone in her foot to help her practice standing flat-footed in her Ankle Foot Orthosis (AFO’s) with a walker. We plan to continue this course of treatment and any others we may come across from which we feel Kailynn will benefit.

Right now in Kailynn's life, she is mostly dependent on us for just about everything. Basically, anything you do for yourself, she needs done for her.

Kailynn is currently in first grade and is thriving. When I first found out she had her disability, I automatically thought she wouldn’t be able to live a normal life, but she has proven me wrong year after year. Just getting Kailynn into a public school and around her peers has opened up so many windows for her, such as speech therapy and vision therapy. 

Kailynn has been able to be involved in Special Olympics bowling and she went skiing for her first time, too. She loves going on the four wheeler and playing outside. Music is one of her favorite things and she absolutely loves other children. Every day she teaches me something new on this incredible journey we are on and I look forward to all the days ahead: setting goals, reaching them, and then exceeding them.

As a mother of a daughter who has CP, I would say the most difficult thing is the emotional turmoil I am constantly going through as I watch my child fight and struggle to perform her best to be better than her best. Bringing her to social events and knowing that she is cognitively and socially aware at the level of her peers, but just lacking the ability to physically do the things they are doing, is really hard.

When Kailynn was brought into our lives, it completely changed everything for the better. She has taught me how to love, how to be patient, and how to fight through our trials with a positive attitude. Overall, she has taught me to never give up. I don't know where I would be without Kailynn. She is my life, she is my love, and she is my hope.

What I love most about Kailynn is her spirit/enthusiasm and her will to want to be independent. She’s a warrior to me because she’s overcoming her disability. She fights with all her might to be successful, all the while keeping a positive attitude of "I will never give up". She does this all with a smile. She is aware of her progress and is proud of herself for all of her achievements.

The advice I would give other parents is to get informed. When I found out I was pregnant, I was 19 years old and living in a small town without the resources to learn about CP, to learn what options there are, and what is available. There are so many ways to get information these days with the Internet, books and other parents who are going through a similar journey. Don't be afraid to open up and talk to people joining the groups that are offered so you don't feel like you are alone. You aren't alone - just remember always you are not alone!

Kailynn's mother uses the Cerebral Palsy Family Network Facebook page to read about others' experiences 

Kaiden, 1 (Anchorage, AK) | hydrocephalus

KAIDEN, 1 (Anchorage, AK) | hydrocephalus 

written by his mother, Kendra 

photographed by Laura Stennett Photography 

At 23 weeks pregnant, we found out there was a concern with our unborn son. The doctor didn't know what was wrong…just that both Kaiden's heart and brain looked abnormal, and unfortunately she couldn't speculate beyond that.

As with most specialists in Alaska, the only two neonatologists were both booked out for two weeks. After begging, pleading and crying to the point of exhaustion, by the grace of God someone had a cancellation within a week.

February 12 was a joyous day in that we were finally getting answers, but also a somber day, as we were officially thrust into a diagnosis we knew nothing about without any prognosis.

Hydrocephalus.

A word that I couldn't even spell at the time and a condition we knew nothing about.

Hydrocephalus is a condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.  

Over time, Dr. Christiansen at Seattle Children's Pediatric Cardiology of Alaska monitored Kaiden's heart. His blockage healed, but hydrocephalus was not going away. No, this was something we would have to learn completely in order to become relentless fighters for his cause.

The neonatologist was able to diagnose him based on his head size while I was pregnant, as well as the fluid measured within his head. After his initial diagnosis in utero, we had monthly measurements. Luckily we were blessed that he was born with his head in the 50th percentile, but unfortunately his head started increasing gradually after 2 weeks. He went from the 50th percentile to the 98th percentile in a month. At that time, we flew to Seattle for a consultation and then scheduled his surgery for the following month. 

On July 27, at 2 months and 1 week old, Kaiden had his first (and I continuously pray his only) brain surgery. It's not uncommon for "Hydro Kids" to have multiple brain surgeries, and the fact that his surgery has been successful so far is a blessing. Sure, he’s developmentally behind, but he’s thriving and I couldn’t ask for more.

The long-term prognosis is unknown unfortunately, because it's the brain and every brain responds differently to the pressure and to surgery. Kaiden is currently behind developmentally and mentally, but we don’t know whether he will catch up, and neither do his doctors.

 

I've suppressed so many emotions while dealing with his condition over the past year. I catch myself asking "what did I do wrong in my pregnancy?” as if I could pinpoint the time I didn't do something correctly that may have caused his issues. While the past year has made me truly appreciate all the little things in life and the small victories with his growth, it's also tough for me to see other kids at his age doing so much more than him. It’s hard for me to want to attend parties or gatherings because of all the comments that inevitably await us.

"Awww he's so small," or "My child is walking already!" Or my personal favorite, "His head is so big!" 

While I'm sure no one means any harm, the comments still sting and cause me to retreat to my own little bubble.

All of the travel and appointments have had a huge impact on my family and two older kids. Over the past year, I've had to leave state for appointments five times. With their dad working four 10-hour days a week and going to school on his off days, the constant back and forth to Seattle is not conducive to our schedules. I don't have time to do anything fun with the family because I spend three to four days at Kaiden’s therapy appointments. I’m so exhausted; when I am off I just want to relax and do nothing, which definitely isn't fair for our other children.

I recently took on managing the State of Alaska Hydrocephalus Association Community Network. The goal is to provide information about hydrocephalus and a support group to those who have been affected by it. Sadly, in the 1.5 years that we've been coping with this diagnosis, I still have not met anyone else to lean on for support locally.

Ideally there should be a local hydrocephalus walk and yearly meetings, but I'm still trying to build the chapter to support that.

If there are any parents reading this whose children are facing a hydrocephalus diagnosis, I want to stress that early intervention is the key to success. Get your child assessed for all therapy disciplines as soon as possible. We did not do this because I wasn't aware this could help Kaiden benefit in the long run. I regret it and wish we had started therapy sooner. Although it will undeniably get tough, don't count them out; every kid is affected differently but every kid deserves just as much love as the next.

Kaiden is the most difficult baby I know, but it's that stubbornness that I love. He's so unpredictable and does nothing by the book. More than anything, I love and admire his strength. 

For more information about hydrocephalus and support from others coping with the condition, please visit: 

The State of Alaska Hydrocephalus Association Community Network (private Facebook group)
The Alaska Pediatric Hydrocephalus Foundation (Facebook page) 

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