Monday, June 18, 2018

Fear to Love, Hawaii Edition

This Little Miggy || Hawaii
Thanks to Alaska Airlines for partnering with me this year on a discussion about fear, love and traveling as a special needs family. You can read the other 3 posts in this series here, here and here. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. As always, all opinions are my own. Family photos by our friends Mark and Anita Warnick. 

Hawaii. It was amazing, I would probably even use the term amazeballs. We had a great time and I want to tell you all about it, but first... a metaphor.

One thing I have learned from working out and weightlifting is that you reach your fitness goals by lifting more than you think you can. And then your muscles get stronger, so you lift a little more. And stronger and more, and stronger and more. Which means the work of lifting weights never really gets easier, because you are always lifting a little more than you think you can. (Or doing one more rep, or running longer, or doing a harder workout, etc.) Therefore, no matter how strong you get, weightlifting is always hard. BUT you also learn that no matter how hard it is, you can do it. You can almost always lift a little more than you think you can. You're stronger than you think you are. 

Which of course I am now going to compare to special needs parenting because hi, it's me. As I've said a hundred times, the journey of a special needs parent is one from fear to love. When you first receive a diagnosis, or hear that something is "wrong" with your child most of us feel a blinding fear. The type of fear where the world suddenly stops, voices become muffled and everything goes in slow motion. And this fear is heavy. "I can't lift it!," you think. "I can't do it! I'm not built for it!" And what you find is that you're stronger than you think you are, empowered significantly by the love you have for your child.

Many of us--not all--conquer the fear we once had of having a child with special needs. We love them and therefore we do the appointments, the therapy, the machines, the specialists, the surgeries, fighting the insurance companies, and sometimes fighting the doctors. All of it. We do it again and again and again. We are stronger than we thought we were.

But in a way, it never gets easier because there is always a new worry--a new fear--on the horizon.  At least now, you know you can do it. Even when you can't do it alone and you need help and maybe still feel helpless...somehow you know it will get done. Whether it's another diagnosis, starting school, residential treatment, public meltdowns, hospital stays, inaccessibility, or illness. You face the fear, you get a little stronger, you face another fear and get a little stronger still. That is the cycle for many a special needs family.
This Little Miggy || Hawaii

So Hawaii...

As I've spent this past year working with Alaska Airlines, talking about our fear to love journey as special needs family, travel has been a big part of this conversation because travel is amazing and eye opening and soul expanding! But travel as a special needs family is straight up daunting. Going to Hawaii as a family is a dream come true, but to get to that dream we had to square up and break through the fears first. My husband and I each confided to each other our anxiousness about our trip in the weeks before. There was a small part of both of us that didn't want to go. It would be easier to stay home. Stay comfortable. But we also knew from experience that on the other side of fear and discomfort amazing things awaited our family. Once in a lifetime eye opening and soul expanding experiences that would be stitched into our collective family fabric forever. Because that's what travel does. That's what Hawaii did for me 20 years ago and that's what I wanted for my family.

Friday, June 15, 2018

Happy Friday + A Call to Action

This Little Miggy || Happy Friday

Hello, hello... is this thing on?

The good news is that so far we've had a great summer. A trip to Hawaii (recap post coming Monday), sleeping in most mornings, doing art projects with my girls... I'm enjoying taking things one day at a time right now.

The bad news is I am really behind on a lot of things. Blogging for one (I have so many posts started and not yet finished!) selections for the house for another (the move in date has been pushed back again, but it's really coming together and I'm getting so excited to move into this home), we haven't yet started packing for our move (hahahaha... packing? who needs to pack?) and it's Lamp's birthday in a couple weeks. She is turning 8 (!!) which means she'll also be getting baptized--an event in and of itself. 

So while I've got a lot going on in my world right now I just wanted to check in and mention a couple things that have been on my mind. 

First, as you might have noticed I haven't had a new special needs spotlight in a while and I would LOVE to get the ball rolling again on this. So if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com. 

Second, my head and my heart have been consumed the past few days with the continuing news coverage of children being ripped from the arms of their parents at the boarder. Like the baby who was taken from his mother while breastfeeding. Other families are being tricked into separation, like one mother whos daughter was asked to go in another room for a few minutes to answer some questions and then the mother started hearing her daughter screaming from the other room as they were taking her away. 

If you are confused about this policy--as it is hard to follow the lies of the president--here is an interview from a lawyer who has done humanitarian work in Arizona for over a decade. She directly answers the questions about the difference of the past policy vs. what is happening now. 

One major difference? They are separating asylum seekers--people who are not "sneaking" into the country, but presenting themselves at the boarder as seeking asylum. This father was so distraught from being separated from his family, he hung himself. This mother came from the Congo seeking asylum. She was then separated from her 7 year old daughter and was forced to undergo a DNA test before being allowed to be reunited with her after several months. 




My 4 year old was a little clingy this morning as 4-year-olds sometime are. She wanted mama, mama, mama. As her little arms were around my neck I tried to imagine what it would be like to have her taken away from me and not to see her for months on end, not knowing where she is or when I would see her again. I couldn't bear imagining it for more than a few seconds. How is this trauma any different from your child being kidnapped? You can't see or talk to them. You don't know where they are, if they are safe or when you'll see them again. Torture, in reference to this practice, is not an exaggeration. 

This should not be a partisan issue. You can be for stronger boarder control while at the same time completely seeing the morally depraved and inhumane nature of separating children from their parents. This is happening on our watch and we need to do whatever we can to make it stop. 

First, call your representatives! If you click this link it will help you make a direct call to your senators and even give you a script of what to say. 

Second, consider donating to the American Civil Liberties Union, the ACLU,  as they work to help these families in crisis. 

I hope you have a great weekend. 
XO, 
Miggy

Friday, June 08, 2018

Spotlight Revisited || Maddy

Hi, Miggy here. When I don't have a current spotlight I like to go back in the archives and re-feature one from the past. There are so many good ones and this one is no exception! I hope you take the time to read about Maddy who has dwarfism. You won't be sorry! Original spotlight was in August of 2013. 

Hi there! I'm Nicole and my husband Bernard and I have two daughters, and a third on the way. We are an Australian family living in Hong Kong (where my husband was born). When I was pregnant with my 2nd daughter Maddy, we found out that her bones were growing abnormally. The general diagnosis given was "skeletal dysplasia" (SD), but this is a broad diagnosis that covers over 200 separate conditions. Initially, the doctors were concerned that Maddy would have a lethal SD. With lethal SDs, the baby's ribs do not grow enough to allow the lungs to be able to sustain life. The baby is healthy as long as it is unborn, but usually passes within hours of birth. As the pregnancy progressed, however, the doctors thought it looked more and more like Maddy's form was a non-lethal SD. Usually a non-lethal SD means that the baby will have a form of dwarfism. Maddy's form is called Diastrophic Dysplasia (DD) and is the same diagnosis as Matt Roloff from Little People Big World and less-known pianist Chris Errera. A mother of an adult child with DD has created a helpful website about this condition: http://pixelscapes.com/ddhelp/ We recently found out that our third daughter, who will be born in December, will also be born with DD. You can read more about Maddy and our journey with DD at our blog here.
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Miggy: Hi Nicole! Thank you so much for participating in the spotlight today. Like you, we too found out things weren't 'right' at the ultrasound appointment. Can you take me back to that day--what you were told and how you coped with the news? Can you compare those first thoughts and feelings with how you feel now?

Nicole: The news for us came over multiple appointments. At 14 weeks, we had a bad result in the Down syndrome screening test. We were told we had a 1 in 7 chance that the baby would have DS. At that time, while it was a shock, I was still optimistic that there was a 6 in 7 chance that everything would be perfectly normal. At 17 weeks, we decided to have an amniocentesis so we could prepare for (I thought) either a baby with DS, or a perfectly healthy child. Instead, we were told that the skeleton had obvious "deformities" and that it was likely to be the skeletal issues causing a false positive in the DS test. Our doctor called a prenatal diagnostician and got us an appointment within hours. At that appointment we told that worst case scenario, our daughter wouldn't survive her first 24 hours, and at best, she would have dwarfism. We were told that the chance of her being "normal" were virtually nil. 

The whole day was such a daze, I couldn't believe that we were really hearing that news. We had decided even before this that we would not terminate, whatever the outcome, but I couldn't get my head around how it would feel to carry a baby for nine months and then to spend one day (if that) and then bury her. I had such a fear of that "worst case scenario," and being away from my family back in Australia (while we were living in Hong Kong) made it so much worse.

We went for three months (until I was about 30 weeks pregnant) knowing there was a very real possibility that she might not survive, so when we found out that her condition was probably non-lethal, I felt as though we'd won the lottery. She wasn't going to die, she wasn't even going to be cognitively affected. It was only a mild to moderate physical disability - we could do this! Actually in those early stages, I was still naive about the disabling elements of dwarfism - I thought that dwarfism was just someone who was short. Now, I am much more informed about how her condition will progress and that's not always easy, but I still know that we are extremely blessed. Maddy is healthy, active and mobile. It could be a lot worse!


Miggy: While I don't know a lot about dwarfism I do know there are different types. Could you educate us on your daughter's specific type of dwarfism and how this affects her?

Nicole: You've previously featured Zayn in your special needs spotlight. He has the most common type of dwarfism, achondroplasia. This diagnosis accounts for over 70% of non-lethal forms of dwarfism so is usually what people think about when they think of dwarfism. Maddy's form is far less common and is significantly more debilitating. Since her dwarfism is caused by deformities in the cartilage, the airways are often affected so some children need tracheotomies. Fortunately, Maddy's airway issues are not so severe and she can breath independently.

The main issues with diastrophic dysplasia comes from joint deformities. For Maddy, none of her fingers bend at the middle joint, although she can do almost everything that any other 3 year old can with her hands! Also, her hip joints are very shallow and we've been told she will need a hip replacement probably by the age of 30. Maddy has great knees and feet for someone with her condition--many kids struggle with severe clubbed feet that can make walking near impossible, but Maddy only needs to wear an orthotic insole. Maddy's most complicated orthopedic issue is her spine--she already has a significant kyphoscoliosis and complicated spinal surgeries will be inevitable.

In addition to the orthopedic issues, kids with dwarfism in general often have smaller ribs, and therefore smaller lungs. Maddy's scoliosis adds to this, so she is more susceptible to lower respiratory infections. I often joke that God blessed her with an amazing immune system though as she rarely catches a cold.

Miggy: Explain how your Maddy's dwarfism affects your day-to-day life? Or does it? Not all special needs do!

Nicole: In many ways, Maddy's dwarfism doesn't affect our day-to-day lives. She is for all intents and purposes just an average 3 year old. There are no medical needs to worry about on a daily basis. She's not affected cognitively so can go to a regular preschool and eventually a regular school. Now that she is older, her doctors appointments and therapy appointments are less frequent than they were when she was first born.

In other ways, it affects our lives a lot. We have many stools around the house so that she can independently get up onto the sofa or onto her bed. Potty training has been more difficult as she cannot reach to pull down her own pants and can't wipe. We will end up needing adaptive devices to help her to be independent in that area. If she were an "average 3 year old," she would be able to walk most places, but she is still very reliant on the stroller. Eventually, she will need a motorized scooter or wheelchair for distances. I'm just waiting for her to be mature enough to be able to steer without causing an accident!


Miggy: What are the biggest worries you face for Maddy?

Nicole: I have seen Maddy grow and develop into an active three year old. She has already amazed me, particularly with how innovative she is. If she can't reach something or do something herself, she often finds a way. At therapy, I find myself saying "I think she won't be able to..." just as she proves me wrong. My worries have nothing to do with what SHE will be able to do because I've already seen that she can do whatever she puts her mind to do.

My two biggest worries are this: firstly, other people. How will other people treat her? Her disability is very visible, although she is no different from anyone else. Will she find someone to love? Will she be able to marry and have a family? Will she be discriminated against when she goes to look for jobs? I hope that people will treat her with kindness and respect regardless of her physical differences.

Secondly, as she ages, Maddy's joints will deteriorate and it's likely that she will suffer from chronic pain. I hope that her pain is not severe and that she can find ways to manage it.


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?


Nicole: The funniest moments for us come from people assuming that Maddy is much younger than she is. It is a common mistake. Realistically, she is the height of a 6 month old, but she is walking and talking! Some people just can't figure it out. Last year, someone asked me how old she was. I told them "two." They replied "months?" She was walking and talking at the time. It amuses me to see them trying to figure out how someone her size can be doing the things she does. Sometimes, people can be borderline rude. I find it better to laugh than to be offended. One time we were at the playground and someone asked us, "She looks like something is wrong with her. Have you taken her to see a doctor?" In moments like that you have to choose to either laugh or to be offended. We choose to laugh.

Miggy: How can people best approach or respond to Maddy? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Nicole: I think the main thing with Maddy is that it's important to treat her according to her age and ability rather than to treat her as though she is younger or not as able due to her size. Also if you have questions about Maddy's disability or dwarfism in general, just ask. I try to be as upfront and open about it as possible. In fact I started Maddy's blog primarily so that I could discuss her needs, her medical situation and our thoughts and struggles with regards to all that. I'm very hard to offend, as long as I know that it's an honest question I'm not going to jump on someone for assuming things, or for not using the "politically correct terminology" (which as a side note, I strongly dislike the current PC term "little people." How is that not belittling? Particularly for adults! I'd rather just use the medical term "dwarf", or even better, say "has dwarfism").

Tuesday, June 05, 2018

Miggy's Favorite Things Lately


Hi! Welcome to Miggy's Favorite Things Lately where--you guessed it--I share some things I'm loving as of late. Namely, something to wear, something to read, something to watch and something to eat. You can see the onetwo, three and four here. Enjoy! I'd love to hear some of your favorites in the comments. 

wear: GapFit Swimsuit
I love this swimsuit so much I actually did an Instagram stories in it. I love this swimsuit so much I left a rave review on gap.com. But the real reason I love this suit so much is I wore ever single day on our Hawaii trip last week. I packed 3 suits and wore this suit every time! (Except the one time it was in the wash.) It is cute AND athletic, meaning you can actually swim, run, and play with your kids while looking cute and chic. It is sold out in black (the color I got), but I'm loving this coral color as well and wishing I had bought it in my size before it was sold out. Hurry it's on sale and only a limited sizes left! 

read: The Surrender Experiment by Michael Singer
So technically I only listened to half of this book before my library loan ended, but it's back on hold and I'm itching to finish it I wasn't so sure about this book at the beginning... I mean it's a memoir about a guy who discovers meditation and who is constantly telling you about an one amazing and life changing experience after another, which I hate to say it, starts to feel a little redundant. However, he shares a lot of spiritual wisdom and truth that resonated with me, so I kept listening...and then the story takes some turns. I would have never guessed it was going where it did! So give it a listen and if you think you know where he's going... keep listening. I love the principles he teaches about surrender, the power of meditation and especially the idea that good things naturally unfold in life without any effort on your part. 

watch: The Crown
I know, I know...this show is old news, but with the recent interest in the royal wedding (and the Meghan and Harry lifetime movie! So bad, but so good!) we started watching the Crown last week and I'm suddenly intrigued with everything about the English Monarchy.(It also helps having recently watched The Darkest Hour and The King's Speech--so interesting to see how all these stories movies and shows weave together!) We're only a few episodes in, but it's an interesting peek into the life of the royal family--although I wonder how much is accurate and how much is fictionalized--and makes me realize how much responsibility comes with their particular life of privilege. If given the choice, I'm not sure I'd take it... what about you? Would you want to be part of the Royal family? Are you a fan of The Crown?

eat: Roasted Sweet Potato Chicken Quinoa Salad via Our Best Bites
I know that as a woman it is sort of expected that I like a good salad, but really, I just like salad! I really do! In general I've always preferred veggies over fruit, and I can eat salads every day. But even salads can get a little same ol' same ol' if you don't change it up now and then and this salad is a game changer. First, why had I never put roasted sweet potatoes on a salad before? Now I do it all the time. Second, the smoked paprika dressing is the best. And the quinoa gives it just the right textural crunch. Trust me on this one and make this salad--even my kids love it!


What are you loving lately? I finally got an audible account and would love in particular to hear your recent favorite book recommendations. 

Friday, June 01, 2018

Spotlight Revisited || Hamilton

Hey guys! Miggy here. When I don't have a current spotlight to share I like to dig into the archives and feature one of my favorites. What I remember loving about this spotlight (original spotlight here), featuring sweet Hamilton and the rare neurological condition he has called Moebius Syndrome, is that it taught me once again the need to reserve judgment. I'm pretty good at not judging kids (or their parents) when I see epic meltdowns and behavioral issues, but this spotlight reminded me to stretch that non-judgment even further, because sometimes we have no clue. None. I hope you enjoy! 


Hi, I'm Destiny. My husband Bryson, and our two sons Hamilton (2) and Clay (3 months) live in the Washington D.C. area. Hamilton has a rare neurological condition called Moebius Syndrome. He can't make facial expressions or move his eyes laterally, has low muscle tone and difficulty moving his tongue to eat or speak. Hammy, my nickname for him, loves playing outside, dumping water, and running around. We are excited to share more about Moebius Syndrome with you all.


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Miggy: Hi Destiny! Thanks so much for participating in today’s special needs spotlight. Lets start at the beginning, can you take me back to the day you knew you found out your son had Moebius Syndrome? Was this during an ultrasound, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?


Destiny: We found out Hamilton had Moebius Syndrome when he was about two weeks old. When Hamilton was born the attending pediatrician noticed his small chin and worried he wouldn't be able to breathe or eat correctly. He was breathing fine, but soon after we tried to give him a bottle and he couldn't suck. The doctors noticed other physical markers of a genetic syndrome (epicanthil folds, hypotonia, and several other characteristics) and so Hamilton was sent to the NICU for a feeding tube and further evaluation. The NICU doctor sent pictures of Hamilton to a geneticist and the first guesses at what he could have were very severe. It is very rare that a baby doesn't know how to eat. Luckily, every test that was run came back normal.

Hamilton was born at a small hospital and since he wasn't eating full feedings we thought he was going to need a permanent G-tube to eat. The hospital Hamilton was born at didn't have pediatric surgeons on staff so we decided to transfer him to a larger hospital in the area for surgery when he was two weeks old. At this hospital a neurologist came to see him and diagnosed him with Moebius Syndrome. Moebius was sort of a relief, honestly. We had spent the first two weeks preparing for severe intellectual and physical disabilities, or the possibility of not having our sweet little boy live a full life. I have to note that there are many children with Moebius Syndrome who are far more affected, and do have complications with eating, breathing, and have more severe physical limitations. We were relieved because we knew Moebius isn't degenerative and we knew what we would be dealing with.


Miggy: Will you please educate us on Moebius Syndrome and explain how this affects Hamilton and your day-to-day life?

Destiny: Moebius syndrome is characterized primarily by the lack of the 6th and 7th cranial nerves. The 6th cranial nerve powers lateral eye movement and the 7th powers all facial expressions. Hamilton can't move his eyes side to side, blink, smile, frown, or make any other facial expressions.

Day to day it doesn't affect us as much as it did the first few months. He used a feeding tube in his nose for a few months until he got the hang of a special bottle to eat. Now, though he might be the messiest eater I've met, he eats everything we do. He can't suck and he uses his fingers to push food around in his mouth if his tongue can't do it (something we work on), but other than that eating is mostly normal. He goes to occupational therapy and still has physical delays (he did not walk until he was almost two), but again these feel very minor and we feel blessed to have a funny, loving, active little boy.

Sometimes his speech is hard to understand, but he's two, so that's typical. We work with a speech therapist and are working on p, b, and m sounds. When he was first diagnosed I worried about the lack of expressions, but my husband and I have no problems understanding his emotions. And, his laugh, is pretty much the cutest thing I've ever heard in my life.
Miggy: What are the biggest worries you face for Hamilton? What are your hopes and dreams for Hamilton?

Destiny: I worry about Hamilton socially. I worry about bullying. So much so that I just can't think about it, I push it to the recesses of my mind and try to ignore it. I worry that people will treat him differently, like he doesn't know what is going on because he looks different, but he will fully understand if he's being made fun of. I expect Hamilton to live a relatively normal life. He's going to have challenges, but I hope he can find good friends. I also hope that he can help others. He's a really sweet little boy, and I hope he never loses that kindness. I also hope Hamilton is secure in who he is. We've met amazing adults with Moebius who have wonderful fulfilling lives. I hope Hamilton can do the same.


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?

Destiny: When Hamilton was about 6 months old we went to a street fair. A little boy ran up to us and said "I can make any baby smile!" He was pulling out all his best tricks, including making faces about six inches from Hamilton's face. He didn't give up for a while and we couldn't bring ourselves to tell him. When he walked away my husband and I burst out laughing. This sort of thing also happened in checkout lines multiple times. I still say smile when we take pictures. A few months ago we had pictures taken and the photographer said "he looks sort of serious." I had forgotten to tell her he couldn't smile.

Tuesday, May 29, 2018

Island Time

This Little Miggy || Hawaii
Aloha.

Just popping in real quick to say that hello from Hawaii. I posted a couple weeks ago about returning to Hawaii, a special place that is near and dear to my heart, but also a place I've haven't been to in 20 years. We spent the first couple of nights in Waikiki (my husband had a dental conference there) and as soon as it was over we hightailed it to the North Shore, which not surprisingly has changed a lot in 20 years!  There are a lot more shops--especially restaurants and food trucks--which of course means more people than there used to be. Of course some things look just the same, while other things have had a major upgrade. (I'm kinda bummed the old school, A-frame McDonalds was swapped out for a more modern one.)
This Little Miggy || Hawaii
The drive up the coast was stunning just as it was 20 years ago. I remembered exactly what it felt like to be a 19 year old kid who had never traveled outside the continental United States and who was suddenly immersed in a way of life that was just as exciting as it was foreign. For some reason the fact that the beach and the ocean were just feet away on this drive to the North Shore was mind blowing to my 19 year old self.
 This Little Miggy || Hawaii
We've tried to keep our plans pretty loosey-goosey with a good amount of relaxing down time, as well as some planned activities. We spent today (Monday) at the PCC or the Polynesian Cultural Center which our girls loved! And tomorrow we're going to head over to Haleiwa--probably my favorite little surf town on the North Shore. Although I've heard it has changed a lot. We'll hit up Motsumoto's  Shaved ice for sure (I remember when it was a shack next to a dirt parking lot!) and my husband has a surfing lesson scheduled for tomorrow as well. We're also hitting one of my major bucket list items on Wednesday and I'm super excited! But also a little freaked out. OK, a lot freaked out. But excited. I'll keep you posted... mwah-hahahaha.

Feel free to follow along on my Instagram and Instagram stories if you want to see what we're up to.

And sorry for the radio silence over here.... I hate having big lapses of time go by without posting (and it rarely happens) but sometimes there just aren't enough hours in the day. Besides, we're on island time.

p.s. We ended up planning our trip at the exact same time as some of our best friends from Texas totally by accident! We will be spending some time with them while we're here. Then I also ran into a friend of mine from college at the PCC and--this is even crazier--are staying at the condo right next to theirs! What? I'm telling you, this place is magic. 

Friday, May 18, 2018

Special Needs Spotlight || Fritz + Marina

Hi! My name is Nicole. My husband Rick and I have two children, Fritz (17) and Marina (15). We met each other over 26 years ago at Iowa State University, and have been married for 21. After living in Illinois for several years after getting married, we have lived in Knoxville, Tennessee the past 13 years and consider this “home”. While I stay-at-home now, I taught Elementary School until I had Fritz. Having both of our children on the Autism Spectrum has taught us A LOT about love and what is TRULY important in life!

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Miggy: Welcome Nicole! I'm so excited to be featuring your beautiful family today. As usual, let's start at the beginning. As we are talking about both of your children, can you take me back when you first knew started seeing "red flags" with your kids? And at what point were you finally able to get a diagnosis? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Nicole: I had a wonderful pregnancy with Fritz! The only “bump” we had was during delivery when he had Shoulder Dystocia (he was a big baby for me!!) As a first time mom, I didn’t have another child to compare him to. He was happy and engaged, but as he approached his first birthday, his lack of language was the “red flag” for us. We searched for answers. The news was just beginning to report on the increase in Autism diagnoses, so we thought we would check with "experts." Pediatricians said he wasn’t on the Spectrum. Speech therapists said “no” when we asked their opinions. His Occupational therapist said that while he possessed some traits (not pointing, not waving, etc) that he was too “happy” to be on the Spectrum. Everyone gave him the diagnosis/label of language Impaired, apraxic or Sensory Integration Disorder. So we tried to calm our hearts and believe that was the truth.

I remember exactly when my life changed forever though… Rick, Fritz, and I were heading to the airport to visit friends in Ohio. We had Fritz (who was almost 18 months old) beginning Early Intervention therapy in Chicago because he wasn’t talking. As I was walking out the door, the phone rang. My doctor was on the phone stating my AFP test (I was about 4 months pregnant at the time) was positive for Down Syndrome. That was the first possible diagnosis that would make me a special mom. I had numerous Level 2 ultrasounds done without any conclusive details. We decided to put it in God’s hands rather than risking a miscarriage by having an amniocentesis. I remember the ultrasound doctor stating that she didn’t understand my reasoning, that she had terminated a pregnancy after learning her child might have special needs. I could not fathom doing that.  I just wanted to prepare myself and our families for having a special child whatever the diagnosis. That was the beginning of the roller coaster. 

In early December, we had Marina (named after Saint Marina…the saint for “handicapped” children) two and a half months before Fritz’s second birthday. She was born without Down Syndrome-- instead, a cleft in her soft palate. We thought all that we had gone through was God’s way of preparing us for her cleft. I remember all our trips to Children’s Memorial in Chicago to see her cleft palate team, seeing what some families were going through with their children. I am sure that some of those same families that I was admiring for their strength in situations that far outweighed my own, were probably looking at a family themselves and thinking the same thoughts. We do what we need to do as parents to give our children what they deserve in life whatever the diagnosis.

After Marina’s palate surgery when she was 7 months old, Rick and I decided to take Fritz to a developmental pediatrician to see what type of services we could ask for from the school district when he turned three years old. I still get chills when I think of that doctor’s name. I remember the crammed, stuffy room she “played” with him in. I remember the coldness I felt. I especially remember getting her “official written diagnosis” in the mail. She described a little boy we didn’t see at home. She used the words PDD. The letter was full of negatives, not one positive, not one offer of support. Our doctors and therapists, however, kept insisting that he was just severely language delayed, and that everything would be fine. So we calmed our hearts again, and plugged along.

Marina on the other hand has been our child with constant needs. After her cleft palate surgery, she wasn’t the same. The sparkle left her eyes. Around her 1st birthday, as she was learning to walk, she would get almost to the couch and lunge/fall forward like she didn’t know her place in space. We were concerned that there was something going on, so we decided to take her to see a neurologist. The doctor ordered genetic testing that she said was standard protocol.  They were looking for Fragile X and other possible chromosomal disorders. The test came back negative for all of those things (which the doctor had said would happen), but it showed a “XP Deletion of the XX Chromosome." Marina’s first official diagnosis. But with that knowledge, there were no answers. The geneticists couldn’t tell us how she would be impacted. There was a possibility that everything would be OK since women have two X Chromosomes to go off of. Rick and I went through genetic testing ourselves to see if we were carriers… nothing. We chose to not test Fritz since boys with this deletion are severely impaired (in hindsight, I wish we had…). We went on with our lives, the therapies, and hoped for the best.

In recent years, researchers have put forward a genetic explanation for the differences in numbers of boys having Autism versus girls. One study stated that the gene or genes for Autism are located on the X chromosome. Girls inherit X chromosomes from both parents, but boys only inherit one from their mothers. The hypothesis is that the X chromosome which girls inherit from their fathers contains an imprinted gene which 'protects' the carrier from Autism, making girls less likely to develop the condition than boys. Also, because women/girls have two X chromosomes, chances are if she has a defective mutation on one of those genes, she can compensate because she has one from the other parent. Men/boys are unable to do so.

Fritz received his official diagnosis of Asperger Syndrome when he was 6 years old. We decided to take him to a psychologist his Kindergarten year because the school district wanted to include him only for Encore classes (Music, Gym, and Art). Honestly, there was a little bit of relief when we heard Aspergers. We knew how important it was for him to be with his typical peers, and knew that Fritz wouldn’t have that opportunity unless he proved it to them. He started talking that year, and hasn’t looked back (he has been in Honors classes throughout the years, and we are now looking at colleges!!!)

Marina has had more diagnoses. Two years ago we started noticing that both Marina’s hands were turning outward at her wrists. She seemed to be constantly pushing her hands onto the edges of tables or asking for “hand squeezes.” What we thought was a sensory thing turned out to be Madelung’s Deformity. She went through surgery to see if cutting her tendons would allow her wrists to straighten before her growth plates closed, but she wasn’t that fortunate. While the pain doesn’t seem as intense, her hands are starting to turn out again. I’m so sad that she will continue to face issues with this, and that down the road she might lose mobility in her hands…

During this same time, the orthopedic surgeon who first x-rayed her for Madelung’s thought she had fractured her arm early in life and that it had never quite healed. (I felt like a WONDERFUL mother then… thinking she had broken her arm and I knew nothing about it!) However, when the hand specialist came in to speak to us, he informed us that she was born with a variation of a radial clubhand. She was born without a radial head in her left arm, so she is unable to twist/flip/rotate it unless it’s from her shoulder. What a huge surprise! We had seen her over the years compensating with her left arm, but thought it was a motor-planning issue. All of these things we feel are connected to her XP Deletion… there might be more issues that will arise in the future.

“Add it to the list”…. That is what Rick and I would always say when another doctor, therapist, teacher, etc told us what was “wrong” with our children, what we said after each new therapy or diet we would try for our kids. Hearing everything that is “wrong” with your child(ren) is overwhelming! Now that we know what is going on, and we can handle it. All of the other mini diagnoses (Apraxia, Sensory Integration Disorder, allergies, etc) make sense to us now. It’s like the Autism symbol- the puzzle piece- each diagnosis for our children was a puzzle piece, and through the years, we were slowly putting the pieces together to see the entire picture. Fritz’s pieces don’t fit in Marina’s puzzle and vice-versa. Each puzzle is unique. “Add it to the list” is also something we say now when they achieve something we didn’t think possible in their early years.
Miggy: Could you please educate us about your children's diagnosis and explain how your children’s needs affect your day-to-day life?

Nicole: The one thing that has been frustrating through the years for me, is that with Autism, there isn’t any medical test to confirm a diagnosis. You can’t look at my children and “see” Autism. You may see some traits (toe walking, echolalia, meltdowns, etc) but all in all, they look typical.

The best way I have been able to describe the Autism Spectrum to people is to say it's like an umbrella. PDD on the far left tip, Aspergers on the far right, and Autism in between. Everyone on the Spectrum stands underneath this umbrella, but the umbrella has holes in it. When various traits rain down, some people are rained on more than others. Why two people with the same diagnosis are completely different, well the rain has hit them in different ways.

Fritz and Marina are completely different, but share a lot of traits as well! Each of them have been affected by Autism through their environments (ex: too much stimulation can cause a meltdown), affected socially (ex: they have a hard time “reading” people or making friends), and they’ve been affected by constantly having to prove themselves to others (ex: having them included with their typical peers in school).

Autism through the years has meant countless hours of therapies, diets, meltdowns, advocating, being a constant caregiver, etc. While our world at one time was consumed with all of those things and more, today it looks a little calmer. Fritz gets support from the school district in regards to extra time on tests, preferential seating, etc. but no longer gets Speech or Occupational Therapy. He is getting ready for COLLEGE! Something we had only dreamt about in those early years!