Special Needs Spotlight || Keegan and Addy Grace

Hello friends! My name is Tiffany, I am what I like to refer to as a “domestic goddess/stay at home mother” to two incredible kiddos, Keegan (4) and Addy (almost 2). My husband Nolan and I met in college, fell in love quickly, and married a year later. Seven years, two deployments, and two kids later…here we are!

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Miggy: Hi Tiffany.  Thanks so much for being here today and sharing your beautiful family with us.  In your email you told me about your daughter, Addy Grace, who has a limb difference and how her birth was a particularly traumatic one. Can you tell us about that experience and how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Tiffany: It’s funny how days can be remembered in such detail when something traumatic happens. I remember the day Keegan was born, but not in nearly as much detail as I can remember Addy’s entrance into the world. I was scheduled to have a repeat c-section, which I thought meant that I would be prepared for the day’s events. I knew what was coming which alleviated some of the stress that day. I also knew the day would have a heightened sense of emotions with my husband being in Afghanistan for the birth of our daughter, but we had a plan in place for him to be able to be present in the operating room via FaceTime on our iPad (the wonders of technology!) My dad would be the one in the operating room with me, providing comic relief when needed and harassing the nurses for tequila IV’s and breakfast burritos until I thought he would be banned from the hospital completely.

When the moment of Addy’s arrival came, she was hoisted up over the blue partition and I looked at her sweet face as the tears rolled down my cheeks. “She’s here! She’s perfect!” I told my husband, as she was whisked away to be cleaned up. The room became quiet. Something was wrong. Addy was crying, but the room was quiet. My dad was the first one to speak, asking if Addy was okay. The nurse cleaning her up assured us that her lungs were strong and her heart was fine. My dad continued to ask questions, being assured that everything was perfectly normal. Then I saw it. I saw Addy’s arms in the air, and one was clearly shorter than the other, and her right hand was missing. I started asking questions, demanding answers when no one would answer me. Finally, a nurse that had been with me in pre-op looked at my doctor and shook her head no. The anesthesiologist left his stool by my head and walked over to look at Addy, and when he returned, he leaned close to my head and said in the calmest voice, “your daughter is healthy, but she is missing part of her right arm and her right hand”…and that’s the last thing I remember until Addy was handed to me in the recovery room. I learned later that I tried to get up off of the operating table mid surgery, and that my dad had to restrain me. I also had to ask who had told Nolan what was going on, learning that my dad and anesthesiologist had relayed the information to him as best they could among the chaos.

My heart shattered into a million pieces that day. I was filled with worries and questions, none of which were able to be answered by the medical staff. They had never seen symbrachydactyly before. My phone exploded with texts and phone calls, everyone wondering why we weren’t posting pictures of our new baby and introducing her to friends and family via social media. The truth is, I didn’t know how. I was in shock. I was in mourning of the daughter I thought I was going to have, and falling in love with the daughter that was snuggled on my chest. This was my Adalynn Grace. All 7 pounds 9 ounces of her. Blue eyes, and auburn mohawk that wouldn’t lay down, ten perfect toes and five perfect fingers of perfect. Now I look at Addy, almost two years old with her wild curls and constant supply of energy. Most of the worries and questions I had that day have faded away. She has either answered them for us, or we’ve gotten answers from various specialists and other families in the limb different community. It took me a very long time to accept Addy’s limb difference, and I still struggle with it at times. I will always be emotional about it, battling anxiety and depression after her birth made things very difficult the first few months of her life. But she is amazing, proving to us daily that her limb difference will never hold her back from accomplishing her dreams. She’s sassy, and tough, and just like any other two year old little girl: completely obsessed with Anna and Elsa!

Miggy: You also mentioned in your email that it was around the time Addy Grace was born that you started noticing signs that Keegan might be on the Autism spectrum.  What were some of those first red flags and where is Keegan at today in terms of a diagnosis?

Tiffany: Keegan has always been extraordinarily smart. He was able to tell us the names of dinosaurs and whether they were carnivores or herbivores since he was 18 months old. A lot of the “quirks” I was seeing, I assumed were due to the stressful situation we were in. He was missing Daddy, I was a wreck and dealing with toddler and a newborn with a husband in a war zone. As he became older, the red flags started popping up more frequently. Aversions to loud noises, new experiences, and large crowds of people made him anxious causing meltdowns that left us both exhausted. He went from eating everything that wasn’t nailed down to refusing to eat almost anything I put in front of him. His verbal skills were exceptional, but his gross motor skills were lacking, and his reactions to situations were always off the charts. He was either so excited to the point of being hyper, or would be unconsolably upset. He developed a fear of almost everything, was extremely cautious and fearful, started avoiding eye contact, and had a hard time forming peer relationships.

I struggled with whether or not Keegan was exhibiting typical toddler behavior, or if the things I was noticing were something to be concerned with. I started researching and reading anything and everything I could to try and figure out if Keegan did fall within the Autism Spectrum, and I can tell you that I still don’t know. I believe he may have a Sensory Processing Disorder, and possibly high functioning Aspberger’s, but again, we don’t know. We started the diagnosis process a little over a year ago. We did an evaluation through his new pre-school where he did qualify for an IEP under for gross motor and social-emotional concerns. We have decided to go ahead and start the medical diagnosis process so that we can put a name to what is going on with him and be able to get him the therapies and help he needs. It’s been really tough, I think especially on my husband, who has pushed back on whether or not Keegan was exhibiting ASD behaviors. I think as a mom, you just know when something is going on. Hopefully by the time school starts back up, we will have a diagnosis and be able to tailor his IEP to better help him succeed!

Miggy: Like you I sometimes find myself wondering if we really are a ‘special needs’ family since in my mind, we are actually quite typical in most ways.  That being said, I am also fully aware of my daughter’s limitations.  Would you explain how your children’s needs–a limb difference vs. autism spectrum–affect your day-to-day life?

Tiffany: At home, it doesn’t really affect our day to day life…aside from the meltdowns and fighting over Iron Man toys. Addy was in PT and OT when we were living in Chicago, which made a huge difference in her abilities. She struggled with balance issues, and the therapy helped to strengthen her core and work on her fine motor skills which will be very important since she will use primarily her left hand. Although she does a LOT with her “lucky fin” as we call it. Since moving, our first priority was to get Addy into therapies here in Ohio, but when we went through the evaluations and the entire process, she did not qualify for services. Beyond frustrating. Everyone agreed with us that she would benefit from continuing PT and OT, but since she tested within “normal” parameters for her age and her diagnosis doesn’t qualify her for services, we are left to figure it out on our own.

When we are in public is really when I am aware of how different our family is. I am always anxious taking the kids out, knowing that Addy’s limb difference draws a lot of stares and whispers. We’ve had some not very nice interactions with people who just don’t seem to know how to react to a child who only has one hand. And then there’s Keegan, who I always worry about in social situations. It’s hard to know how he will react. I always try to prepare him when we are going somewhere or doing something new, he tends to do better when there is a plan in place and he knows what is going to happen ahead of time. Familiarity also helps, so we try to go to the same grocery store so that he knows what to anticipate. Alleviating the anxiety is half the battle with Keegan. We have good days and bad days, but he’s doing  a much better job in trying new things and using new coping mechanisms to calm down when he becomes anxious and upset.

          

Miggy: What are the biggest worries you face for Addy Grace and Keegan?    

Tiffany: My biggest concern for Keegan right now is him being successful in school, both academically and socially. I see how hard it is for him to interact with other kids and it breaks my heart. I don’t want him to feel alone or ostracized in school, which would only had to his anxiety and frustration. My hope is that getting a medical diagnosis will help us get him the help he needs to be successful in his interactions with other kids. I worry that Keegan will be viewed as a “problem child” and not given the time and attention he needs throughout his scholastic career. I worry that he will be labeled, and therefore not expected to meet goals and expectations set by teachers. I worry he won’t be able to form lasting relationships with his peers, and girls when they eventually and inevitably become his focus.

With Addy, my worries are the same as any other parent with a child that is physically different: will she be bullied? What happens when she’s old enough to understand the stares and whispers? What happens when I’m not there to protect her or intervene? I worry about walking the fine line between helping her and hindering her…am I doing too much? Am I not helping her enough? I worry about her self esteem, when one day she realizes she’s uniquely different. Hopefully with the help of the limb different community and the friends and role models we have found through The Lucky Fin Project, Addy will be proud of her limb difference, and use it to educate others and celebrate other people’s differences. I try not to worry too much about Addy’s future, she has already proven to us that she can take on just about anything…and I’m sure that won’t be changing any time soon!

Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Tiffany: We often get questions from kids on the playground, and our answer is usually pretty simple: she was born that way. A lot of times we use the Finding Nemo analogy, we explain that she’s just like Nemo, born with a “lucky fin”, and that usually satisfies their curiosity. The funniest moment actually came from Keegan. Once Addy began walking and exploring her world, Keegan soon figured out that this meant his world was no longer safe from his little sister. Addy is extremely ornery, and with a smile, she usually gets away with her antics unscathed. One particular day, Keegan was eating a snack at his little table when Addy walked up and stole something off his plate. Without missing a beat, he screamed, “THE FIVE FINGER BANDIT STRIKES AGAIN!” It’s a nickname that has stuck with her. The looks we get when he says this in public are priceless!

Miggy: You are in the very unique position of having one child with a visible difference and having another child with a difference you can’t see.  How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Tiffany: This is something I have addressed on my blog several times, as it seems to be a recurring theme (shameless blog plug!). The biggest thing I want people to do is to treat my children like they would their own. Addy is not a delicate butterfly that needs assistance with everything she does. Trust me, she will tell you to “piss off” with the look she gives you as you attempt to help her climb a ladder. As far as Keegan is concerned, he navigates his world pretty well, but when he does have a meltdown, it would be great to not get stares and assumptions that my son is throwing a fit for no reason. There is a reason, and we handle them as they come as best we can. Our family is different, we have good days and bad days, but we are just like any other family!

And PLEASE…for the love of all that is holy and sacred… ask questions!  Don’t “shush” your child when they ask about Addy’s arm, don’t steer them away from playing with her because she’s different. That mentality is how bullies are born. Inclusion is key. Come and say hi, I would be happy to answer any questions you or your child has (yes, even adults can’t help but stare and whisper). It gives everyone an opportunity to learn something, and gives me a chance to brag about my monsters!

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?