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.
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!
Marina on the other hand, still gets Speech, Occupational, and Autism Support services through the school district, and receives private therapies as well each week. She will continue to need services as she gets older. Both kids also have peanut/tree nut allergies (Fritz’s is severe!) as well as a number of other allergies, and both have Sensory Integration Disorder and Apraxia.
Rick and I view Autism as something that our children have, not who they are. Everyone has something going on with themselves. Some individuals have Diabetes. Others ADD/ADHD. Dyslexia. The list goes on and on. My children are SO MUCH MORE than autism.
Miggy: What are the biggest worries you face for your children? On the flip side, what are your hopes and dreams for them?
Nicole: My biggest worries are about their futures or if something happens to me. “Who will take care of Marina?” (currently, I wash her hair, shave her legs, put on her make-up, etc). “Will they both be able to accomplish their dreams?” (Fritz wants to be a broadcaster, and Marina a model). “Will they get married and have children?!? Experience the same type of love I have felt over the years as their mother?!?” Or, the biggest worry: “Have I done enough?”
My initial response in regards to hopes and dreams: Rick and I have the same hopes and dreams as typical parents. We want our children to be: Healthy. Loved. Successful. Have friends. Be part of the community. You get the picture. The things that typical parents want, we want too… it just looks a little different. I once read a book of essays entitled “You Will Dream New Dreams” and that is so true! I remember dreaming about who I would marry, the children I would have, what all they would accomplish in their lifetime. If I had a son, he would play baseball, enjoy going to Iowa State football games with his father, get dirty in the mud. And a daughter, she would be my girly-girl…dancing, playing dress-up, maybe a cheerleader like I was. But, those were MY dreams–not theirs. I have realized over the years that that is how any parent should view their job–to help their children be who they were destined to be. For my children, it has been a tougher road than most, but the joys of their accomplishments far outweigh the negative implications people have when they hear the word autism.
Hopes and dreams change over the years. I dreamt of my children saying “I love you” when they were nonverbal and their peers were talking a mile a minute. Now, I hear those words on a daily basis. I dreamt of the day that my children would play alongside of their friends. Today, they are a part of various sports teams (swimming, tennis, etc…). I have hoped for friends, for understanding/compassion, for inclusion, for opportunities to allow my children to become the people they want to become.
To be quite honest though… it’s tough. It’s tough to hear my friends talking about colleges their children are looking at when there are few with autism support that my children need. It’s tough to see engagement pictures, new babies, incredible jobs, etc. splashed on social media when deep down I am not sure my children will experience those things. Do I hope and dream that they do? OF COURSE! But the reality is that I will always be a Mom. They will always need me (or someone else) taking care of them, making sure that they are OK.
People often times ask me why I am not bitter at the world. They ask me about the difficulties I have faced or even pity me by saying, “God only gives you what you can handle,” or “I don’t know how you do it.” While I know that those words aren’t used maliciously, I want to tell them that I don’t see my life as one to pity. Are there times that I feel sad that my children don’t have the same experiences typical children do? Yes. Fearful for the unknown in their futures? Of course! But I can tell you that the lowest point in my life thus far did not have to deal with autism. Instead, it was when I was going through infertility prior to having Fritz. Being on my knees crying to God, asking Him for a child to love. THAT was my lowest moment. I laugh now and tell people, I guess I wasn’t specific enough, but all I wanted was a child to love. I have been blessed by two amazing children and knowing what all I know now, I wouldn’t change my life for anything. As a special parent you learn to adjust your hopes and dreams, to appreciate the little things in life and I know now that’s it’s OK to “dream new dreams.”
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: I would say that we get the most laughter when it comes to Fritz! Since Fritz is on the “high functioning” end of the spectrum with Aspergers syndrome, “Aspies” tend to say what they are thinking without the social filter neurotypical people have. They can easily misinterpret social situations because they are unable to filter and process the actions and emotions of others. If Fritz is thinking it pretty soon, he will be saying it. He has asked women when they were due (they were overweight), announced loudly that someone didn’t wash their hands after using the restroom (that IS gross, but), informed people that they needed to take care of their nose hairs (no names will be mentioned), and lately, has decided to tell Rick and I EXACTLY how he feels about our parenting (we are “horrible parents” just to let you know! Lol) The things that we think in our heads, he feels the need to share.
Idioms, double meanings, exaggeration, sarcasm, implied assumptions, all of these are things Fritz struggles with as well. He has physically looked in his shorts when asked, “Do you have ants in your pants?” He has been mortified that Kroger was selling “bear claws” in the Bakery, and has shouted at the top of his lungs at the mall, “Mom! Will you give me a hummer?!?” (He was talking about the car… lol.)
With Marina, one incident sticks out when she was learning how to talk. We were called in by her first grade teacher because Marina was shouting the “f-word” during the day. Rick and I sat there, nodding our heads and telling them how sorry we were for her behavior, but when we got to the car, we immediately high-fived one another since she used the word appropriately! Ha!
Miggy: 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?
Nicole: There are so many “myths” that surround Autism. People with Autism aren’t listening (or learning) if they aren’t looking you directly in the eyes. That they do not care about others or have empathy. That they all have a “special gift” or savant skills like Dustin Hoffman in the movie Rain Man. Or my favorite: Children with Autism are unruly or spoiled and they simply need to be disciplined.
We have had to dispel the look me in the eyes myth the most with teachers, coaches, and friends in regards to our children. You aren’t listening unless you are directly facing the teacher with your eyes locked on theirs–correct? False! Fritz is visually overwhelmed by his environment. It takes effort for him to focus on the person talking, and if he is focusing on doing that, his ears will be “turned off.” Marina will avert her eyes and “stare off into space” when she is trying to process what she has heard. It’s sort of like how some people can’t chew gum and walk at the same time.
When you hear the word empathy, you think of feelings, so saying that individuals with autism don’t have feelings is totally untrue. Chris Bonnello of “Autistic Not Weird” says that there is a huge difference between not spotting the signs of sadness and not knowing what it’s like to be sad. So, so true! Individuals with autism often care deeply, but lack the ability to spontaneously develop empathic and socially connected typical behavior. Both of my kids show empathy in different ways. Marina will stop and ask if I am OK, and if I am not (ex: I tell her my back hurts) she’ll try to “fix” the situation (ex: start massaging my back). Fritz picks up that I am sad (ex: seeing me cry after hearing a friend had passed away), and knows he is supposed to say something, but it is often a very black and white response.
The hardest part for me are the comments from others. I can’t even begin to tell you the number of times we have been given advice on how to raise our children. Strangers. Friends. Some thinking they are being helpful, while others are just plain judgmental. It’s frustrating! I can’t spank the Autism out of my children, but what I can do (when it is appropriate) is to teach my children right from wrong. My children have sat in timeout, they have lost phone privileges, spent time in their rooms “thinking” about their behavior. But they have never been disciplined for something they cannot control.
My wishes are simple, I want others to step back and realize that while my children look typical, there are things in their lives that they cannot control. I want parents to teach their own children to befriend those who are lonely and to see similarities versus the differences in others. I want community members who see the worth of everyone and in turn create programs to include all abilities. I want empathy. Inclusion. ACCEPTANCE!
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Nicole: There have been too many lessons! I think the biggest has been to step back and savor the “tulip moments” in life.
Miggy: Tell us something you love about your child. A special story, a personality trait or just something others might not know.
Nicole: Fritz: There is nothing NOT to love about him! He considers everyone his friend. He truly sees the good in everyone and has never met a person he doesn’t like. He is sweet, compassionate, and makes me laugh every day.
One of my favorite stories of him is when he was 13 years old and was chosen to be the meteorologist on the local news one morning. He had no script whatsoever. He had to manipulate the green screen while talking about the weather to thousands of viewers, and he rocked it! He had everyone in the studio laughing hysterically and the comments online about his personality made my day, but it was his reaction that made my heart feel full. He was so proud of himself. He still talks about that experience today. That is all he wants to do in life. I honestly feel that one day those dreams will come true.
Marina: She is our rough and tumble child–always in action! I can dress her up in dresses and bows, but it doesn’t stop her from rolling in the mud or riding her bike full speed down our neighborhood hill, sitting in the front row of every roller coaster, or whizzing past us on her motorized scooter. She is full of so much grit and determination for life! I admire that in her. What I love the most, however, is that her smile and laughter will melt your heart and her eyes will touch your soul… her eyes.
I can’t imagine my life without my children. They are my everything!
Miggy: If you could say something to the mom who just starting on this journey of autism and special needs, what would you say? What would you say to yourself if you could go back in time?
Nicole: At the beginning of my Autism journey, one of my first special friends (a friend with a child with special needs) gave me the essay “Welcome to Holland” which I fell in love with immediately! Through the years, I have shared it with other special parents, with teachers, and even friends who are facing something they hadn’t planned for. Since really, in the grand scheme of things, we all at some point in our lives will be diverted somewhere we hadn’t planned on going. For me, it has been autism.
One of the reasons this essay means so much to me, is it reminds me to appreciate the beauty of my children. To appreciate the “tulip moments” in my life. “Tulip moments” are things that we were told our children would never do, but they have. Learning to talk…”tulip.” Having a friend…”tulip.” Showing affection… “tulip.” Things that others might take for granted, I cherish. These moments come when I least expect it, and take my breath away. I would tell that mom starting out that she will experience those moments too!
Both Fritz and Marina have shown us numerous tulip moments over the years! These young adults so full of life, bursting into a room with their infectious laughter and saying hello to people didn’t speak until they were nearly six years old! The children who struggled with motor planning are now competitive swimmers and a tennis player (Fritz) and cheerleader (Marina). The children who the school district said would never achieve anything have both been fully included in classes throughout the years and have flourished (Fritz getting ready for college!). It’s amazing to see the people they have grown into being, and we look forward to future “tulip moments” that we know are to come.
I think tulips are the perfect flowers to represent these moments in our life. Tulips are hardy. Every year after the cold, dark winter they emerge. They bring hope of a beautiful spring, just like the hope we feel as special parents. Tulips need rain (hard times), they need sun (warmth of others), and they need LOVE in order to grow. Tulips represent all that we should appreciate and treasure.
I would tell that new mother that there have been so many people who have bought “new guidebooks” as well. People who look past labels and see “Rembrandts” instead. People who have experienced their own “tulip moments” because they took the time to slow down and appreciate the beauty of their child(ren).
I would tell her that there is hope and that she is not alone!
I'd like to just mention that the AFP test is a *screening*, not a diagnostic test. It doesn't test positive or negative for anything. It just measures levels which *could* indicate an issue and may warrant further testing (of course, if expectant parents wish to pursue the testing).
Correct. I guess in my statement of “testing positive”, I meant to say that the doctor who phoned stated the baby (Marina) had Down Syndrome. (**That conversation was not with my regular doctor, and was not a good “experience” in my life… I chose not to go into full detail in this article).
That doctor said the baby had Down Syndrome. That is why we had the Level 2 Ultrasound done… to get more answers. When that didn’t give conclusive results, an amniocentesis was offered. We didn’t want to risk a miscarriage, so we declined.
There are a variety of reasons for a “false positive” AFP.
Love, love this story. Hearfelt and informative! Thank you for sharing. Fritz and Marina are blessed to have supportive parents who constantly advocate for them!
Amazing story about an amazing family! I have learned so much about how to better serve my students from the wisdom I have gleaned from Nicole! Thank you for sharing your heart!