Friday, February 5, 2016

Somewhere on the Spectrum. Written by Jennifer Bortz

Somewhere on the Spectrum


I don't even know where to begin as I write this. My son Chase is 4 and is the most loving, kind, sweet and happiest of little boys. Chase has autism along with apraxia of speech and a feeding disorder. Our journey began at the age of 2. Chase hit every milestone for the most part "on time". As a baby, he was magical. He slept well and was a champ at breastfeeding. Things went very smoothly. At all of our post-partum check-ups we both did great. I was not "depressed" and he passed all the autism surveys they had me check mark. Looking back, things were "normal". I had no idea how much my life would change in just a few short months. At 18 months Chase wasn't walking. I was not too concerned until family members started commenting about it. I had the mentality that when he was ready, he would walk. At our 2 year wellness visit the doctor had asked if I had any concerns. At this point Chase was walking (mostly on his tip toes) but he wasn't saying any words, just lots of babble. I mentioned this to the doctor and he wanted to see Chase walk. I also mentioned that he "flaps" his hands a lot. The doctor took seconds to watch Chase walk and as he was looking at his computer said to me " I think he could possibly have autism". My heart sank. I will never forget that moment. I was alone at this appointment and I will never forget the feeling of time almost standing still. I didn't know what to say or do. I felt as though the doctor was very cold and more concerned about getting to his next patient. He quickly wrote down some names of developmental pediatricians and mentioned early intervention and was out the door. That was it. This was the start of our "new life".

I immediately began my search of new doctors. There were very long waiting lists. In the meantime I contacted early intervention and they met with us right away. Chase at this point had what they called SPD. Sensory processing disorder. I had no clue what this was. We began speech and Ot in our home. We got very lucky and wonderful therapists who have since become very close friends. We also enrolled Chase into Good Shepherd Pediatrics for additional speech therapy. We were on our way. I had "autism" on my mind a lot. It was always in the back of my mind, creeping up on me and stirring feelings of anger and sadness. I felt that my son would be ok and with these new therapies, he would make progress and "catch up" and everything would be fine. I can admit now that part of me was in denial. We had opportunities to get further testing done at a new up and coming place in my town but when the time came, we backed out. Partially because we didn't know enough about this new facility and partially because I think we were scared. We kept on loving our son more than anything and watched his progress,and we were hopeful that everything would be ok. He was still the most loving and happiest of little boys. I cherished everyday I got to spend with him. We had fun everyday and went on adventures and fell more and more in love with one another.

March 2015- The day arrived that we would meet with Dr. Karen Senft. After months of being on a waiting list, the day had come. At this point, I was ready. I had come to realize that my son needed more. More therapy and more answers. Our private insurance only covered so many visits for therapy and we were in debt because we refused to "not" take him. I had by this point researched enough to know that we needed help and by receiving a diagnosis, it could only actually help us. I bought every book I could find on autism, researched endlessly and became obsessed with learning everything I could about "autism". On this day, it was confirmed. My son was autistic. I cried. My parents were with us and we asked a lot of questions and we got pointed in the right direction. I had to stop crying and get myself together and be strong for my son. And that's exactly what I did.  

I allowed myself time to be sad. There were so many mixed feelings from anger to sadness to "why us". Its only fair to let yourself feel these things and I did, but I was careful not to let them take over. I am a person of faith and I struggled and questioned my faith at times during these initial few weeks. It was difficult. In time, my faith only got stronger. When thoughts would enter my mind as to whether or not my son would ever talk, or have a "normal" life or go to college or get married; I'd stop myself. I don't know what the future holds. How I can predict this? It was one-day-at-a-time.

With a lot of hard work and persistence, I got the ball rolling and set up appointments and therapies and did what I had to do. At this point my son was 3 and had "graduated" from early intervention and moved on to a wonderful classroom at our IU. (laughing) I will never forget that first day....my sweet, little, non-verbal baby; leaving me for the first time in his whole entire life. My mom and I were both a mess. We watched as he took someone else by the hand and left us. Those were the longest few hours of my life. ( I'm sure many of you can relate) As it turns out, school was the best thing for him. He loved it. He was blessed with wonderful teachers and the entire staff to this day just amazing. Chase has always loved going to school and his therapies. We are lucky. We make it fun for him and he just looks forward to going.

After months and months, everything finally got into place. School was going smoothly, therapies were underway and wrap-around services started. In time, it all got figured out. Its exhausting work. Not a day goes by that I don't have something to worry about, but its all worth it in the end. My son is making great progress. He was recently in our local newspaper  (the morning call) regarding his progress in feeding therapy. I was and am very proud of him. Each day, he grows. Each day, he amazes me. Each day, he makes me so proud. We are a great team.

This journey for me has been a roller coaster,as I am sure it will continue to be so for the rest of my life. My faith is stronger than ever, despite having been tested greatly. I have an amazing mother who has never once left my side. She has been my rock and salvation. My father, the strongest man I've ever known, has also been there. They have cried with me and held me up when I was weak. They are the most loving grandparents to my son. They love and cherish and adore him. We are blessed to have such a wonderful family.

As I write this, Chase is on his way home from school. He rides the bus (only one way, because I start small). He loves the bus and when it pulls up outside of our home, he's smiling from ear to ear. He exits the bus and says bye-bye to Donna (the driver) and stands at the end of the driveway watching the bus go down the street. Chase then heads inside for his favorite snacks (chips or cookies) and some alone time and tv. He has usually had a pretty busy day by the time he arrives home. We often start early with therapy and wrap-around services but we finally seem to have a set schedule (for now).

I am grateful for this journey. I am blessed to have the child I have. I wouldn't change any part of him for anything. I wouldn't change him for the world; I only wish I can change the world for him. It's a mess out there. I am learning as much as I can to protect him and strengthen him and prepare him. With the small, supportive circle I now have, I am hopeful I can continue to be strong and do my best for my son. He is he is the love of my life. He is the most kindest, sweetest, happiest and most loving little boy I've ever known. I'm not sure how I got so lucky but I thank God every. single. day. xxxxxxxooooooooooooo

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to join us daily at the GJOP page. 

Friday, January 29, 2016

Somewhere on the Spectrum. Written by Leigh Ann Berger

Somewhere on the Spectrum


I walked into his office and sat down. As I looked around the waiting room, I saw other people that probably were just like me. Their minds were wired differently and they were there to make sense of it all. They wanted to know who they were and maybe they wanted to be fixed.

I, on the other hand, didn’t want to be fixed. Yet I did come to find out who I was. For 35 long years, I had struggled to come to terms with why my brain couldn’t function right. I knew I wasn’t like other people. Social situations killed me. I preferred to be a loner so I didn’t have to associate and talk to other people. When I was around other people, my mouth ran because I didn’t know the appropriate time to keep it quiet. And of course, people looked at me as strange because of it.

Worry. That was my middle name. I was petrified of the future and what would happen next. I couldn’t live grounded in the present. I was either living rehashing and regretting my previous mistakes in life or I was scared as to what may lie ahead in my future. I couldn’t just be present. There was no way I could sit back and enjoy life for the beauty that it was. I was rooted in more angst, more emotions and more frustrations than I could ever explain.

And talking to people, well that was even harder. Because of my nerves my mind ran a mile a minute and many times before I could even get my words together they came spilling out of mouth. I could count the looks people would give me probably thinking what the hell is her problem. 

But yet, I was an extremely, bright, out of the box thinker. I always wanted to go far, to push myself beyond my comfort zone and any limits out there. Life, to me, was a journey that taught me lessons each day. And I wanted full force to go into each day and, like a sponge, learn everything I could. 

“Dr. Dumont will see you now.” 

This was it.

I walked in his office and stared at him. “Hello, Leigh Ann. Nice to meet you”, Dr. Dumont said.

I responded with words I couldn’t quite make out and then I sat down. He sensed my nerves.  “I know this is hard, but let’s talk. Let me get to know you. Why are you here”, he asked.

“I think I have Asperger's.”

And at that moment, every emotion, every tear, every bottled up feeling I had for years came out. I had to tell him I was sorry and that this was harder than I thought. He understood. 

As I gained composure I explained to him that a year prior I had received the same diagnosis on my son. He was quite like me: hated change, had a hard time in social situations, got frustrated and broke down easily, preferred to be alone and not in crowds. The list honestly was endless. And through learning about Asperger's through his diagnosis, I began to wonder if that too was the magical explanation for the last 35 years of my life.

I spoke and the words and emotions just poured. I described my childhood as always feeling like the outsider. How kids called me odd and made names for me. I always felt like my brain was so wacky and I could never get it to think in one piece. 

After rambling on and on, I finally stopped. And I looked at him and asked, “So, do you think I have Asperger's?”

He nodded, “But it doesn’t change who you are, Leigh Ann. I gather you came here just to find out but other than that, it should really make no meaning on your life.”

He was right. Asperger's was a part of who I am but it didn’t define me. It just helped explain why my brain functioned differently. 

 That night, I sat in my room in bed and just closed my eyes. I smiled and felt the tears run down my cheek. After 35 years, I have finally gotten a definition of just who I am. I didn’t have to feel like I was strange. I wasn’t. I was just me.

I was a person who was wired a little differently. But yet, I was still like everyone else I had ever met. I was a living, breathing, individual that was capable of so much. There wasn’t anything I couldn’t do in life if I wantedAsperger's didn’t define me. Nope, it was just a mere part of the wonderful person I call myself.

It helped me to not only learn who I was but it helped me to relate even better to my son. We had the same brain so I understood him. And I defended him fiercely as all Momma Bears do when someone would call him strange or weird.

Last summer, after many years of my son and I being verbally abused by my husband at the time, I took a stand and got him out of the house. He was an angry person to begin with but he couldn’t understand that our minds were just not the same as his. So instead of learning us as I begged him to do so many times, he decided to torment us instead for what he saw as shortfalls. I wasn’t going to let either my son or I be treated like we were anything less because our minds were different. 

At the moment I did the impossible and kicked him out, I found the greatest strength in me I had ever known. My diagnosis taught me to never be scared, to love who you are for all you are. And when I began to love and accept myself for who I am, I began to wake to the reality of how I truly wanted to live my life. 

Even though I went into the breakup scared and wondering how I would ever do it alone, I found a resilience and a zest to begin again. Since then I have come to know myself better than ever and I have found parts of me I never knew existed. I was a survivor. I was a person with a different way of looking at life but that this view would always give me new and better ways to forge a new path for myself. 

Most importantly, I found myself. Even though I didn’t let Asperger's define me, it gave me a sense of purpose of why I was here on this Earth. It taught me I didn’t need to fear the unknown that I was living my life exactly as I was meant to be. There was no regretting the past and there was no reason to be scared of the future. I was truly exactly where I needed to be in life. 

Asperger's will never define who I am. I will always just be me. And that needs no explanation.


Leigh Ann and her family

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to join us daily at the GJOP page. 


Friday, January 22, 2016

Somewhere on the Spectrum. Written by Theresa McGrory

Somewhere on the Spectrum

Hello my name is Theresa & I have a son named Tristen whose 9. Tristen was diagnosed at 2 ½ years old with severe autism. He was non-verbal from 15 months till 4 ½ years old. I’m a huge advocate for my son but it was my husband Jesse who started everything for our son. Jesse’s mom was concerned & mentioned several times that Tristen should be evaluated, and for a period of time we were in denial. We never heard of autism before, no one in our family had autism.  

Jesse started noticing Tristen was acting different & stopped doing things he always did. So we seriously sat down & he showed me some videos on YouTube. And we both started crying a lot & that’s when I became an advocate. We are so thankful for YouTube & the internet because without it we wouldn’t know anything about autism & wouldn’t of known how to get a diagnosis. 

After getting an eval from early intervention Tristen started getting in home services until he turned 3 & on August of 09 he finally got an official diagnosis at an amazing place called ARCH. Then he went into the IU preschool for 2 years & he also started wraparound services as well. The first few years were the hardest on us because Tristen would chew everything (food or non food items) & put everything in his mouth.  When he got his first chewy (toys made for sensory kids) it was the best thing ever. Tristen was fascinated with mirrors, fans, numbers & letters. We stayed away from family & friends for a few years because it was just too hard on our family to be out. 

We had tss & bsc for 4 years & I had a mt for 3 years. They were the most amazing & loving people ever. I am so thankful for all the wonderful therapists who came & helped my son. When my son turned 7 in Nov. 2013 he mastered all of his goals for the in home services & we ended them. My son also had outpatient services from when he was 3-7years old. Our first therapy was food therapy then Speech, OT, & PT. He has always received OT & Speech in school as wellTristen started reading when he was non verbal so books have always been his favorite thing. At 4 years old we got his first laptop & he has learned so much from technology.

I was so nervous about kindergarten for Tristen but because of all the hard work & support we received Tristen was able to be in a mainstreamed class with a 1 on 1. We now do a lot as a family & he enjoys special Olympics swim class & miracle league baseball. He still goes to ARCH for after school program & was able to join the summer camp this year which he enjoyed. 

Tristen has always blown us away with all of his progress, & I am so thankful for all the love & support from my family & friends.

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to join us daily at the GJOP page. 

Friday, January 15, 2016

Somewhere on the Spectrum. Written by Amy Kattre

Somewhere on the Spectrum

Our son was born in August of 2012, just four days shy of his due date.  He joined his big sister who was just 19 months old.  After a difficult couple of years trying to get pregnant, we were thrilled to have two babies close in age and of course happy that we now had one of each.  

He was such a happy, easy-going baby.  When I look back at pictures of him, I am amazed at how many I took, but he was just so happy all the time, I couldn't help it.  He hit all of his major milestones on time, he babbled a lot, he made eye contact.  But as time went on and the closer he got to 2, he wasn't saying many words.  His sister was a late talker and we were worried about her for awhile, but it was almost as if one day it just clicked with her.  One day she wasn't talking much and the next day she was talking in full sentences.  So as many parents do, we just kept waiting and thinking he would be a late talker like his sister.



Then we noticed something.  The arm flapping.  He seemed to be doing it a lot more and it seemed like it came out of nowhere.  Anything that excited him caused his arms to flap.  This past summer sometime, I took the kids (I now have three - we had our baby girl in March) to my grandma's house and my mom and aunt met me there.  My son was playing and interacting like he always does, and he was getting excited and flapping his arms.  I remember looking at my aunt, who has a lot of knowledge and experience in this stuff and saying, "Isn't that a common sign of ..."  I didn't even finish the sentence.  But I didn't need to.  She shook her head yes.  We talked after that about how interactive he is, how he makes eye contact, etc.  But it was in that moment that I knew we needed to get him evaluated.  I will never forget that moment.

His pediatrician got us the referral to see the pediatric psychologist and we met with him for the first time on August 19th.  After about an hour of being there he said we needed to come back for an official evaluation, but he thought our son was on the spectrum, but almost seemed like he had one foot in and one foot out.  Our next appointment would be September 3rd.

Another day I will never forget.  I think my husband and I both knew what the outcome was going to be.  But when he told us that he thought our son needed intense in-home therapy for 25-30 hours a week?  It hit me like a ton of bricks.  I felt like I was going to throw up and I have no idea what he said after that.  He could see in my eyes that I was about to lose it so he grabbed the kleenex box and came to sit next to me.  He asked me if I was ok and I just started crying.  In that moment I had so many thoughts running through my head.  I was thinking about all the hopes and dreams I had for my son.  What will his future be like?  I was thinking about all of this therapy and how I was going to have strangers in my house every day for several hours.  How much our lives were going to change.  I was thinking about how it wasn't fair.  It's not fair that he has to spend 5-6 hours a day in therapy.  He's 3 years old.  He should be able to run around and play and get dirty and be a normal little boy.  But what had me most upset in that moment was the guilt.  Through the tears I told the doctor there's got to be something I did wrong.  I had a rough pregnancy with my third baby and I didn't give him enough attention during that time.  And now the baby is here and I'm breastfeeding and I'm not giving him enough.  I failed him.  That guilt that I felt (and let's be honest, I still have a lot) was just too much in that moment.

The doctor took my hands, looked me in the eye and said to listen carefully.  It's ok to feel sad and to cry and be upset.  He told me to go home and have another good cry.  But then I need to get ready to fight.  My son needs me more than ever.  Things are going to be hard.  It's going to be a long road, but if I don't fight every day for my son, nobody else will either.  He told me that the process for getting him help at school and in therapy programs is frustrating and long.  My son is 3 years old and has so many positive things that he does.  The doctor told us that with this therapy and him being young, he believes he will see incredible progress.

So here we are, only 4 months later.  And let me tell you, I have fought for my son and I won't stop.  He recently started the in-home therapy and although it's very early, he is doing great.  I decided to start my own blog and Facebook page and document this new journey our family is on.  In these past few months, I have had a hard time sleeping at night.  I have so much on my mind so having this place to express myself is very therapeutic for me.  It also gives my family and friends a chance to keep up with his progress.  I also hope that maybe some day someone will find my blog who has a child recently diagnosed and be able to relate to what we're going through.

We obviously had some other concerns other than the arm flapping, but that was the one major red flag for me.  Some of the more "common" autistic behaviors, he doesn't do.  I say "common" because the doctor told us the spectrum is the size of Asia so I don't know how people can really say what is common or not.  But anyway, he is and always has been an awesome sleeper.  He sleeps through the night great and still takes 3 hour naps.  Loud noises don't really bother him, although he has recently started holding his hands over his ears when the baby cries.  He doesn't really throw extreme tantrums.  I mean he gets mad when he doesn't get his way, but he's three.  He gets over it about five seconds later.  He makes good eye contact and loves to interact with people.  Anyone who comes to the door gets a big "HIIII" and a smile.  He climbs right up on laps of people he has just met.  And one of his favorite things to do is wrestle around and rough house.  He's just an awesome kid!

He is an extremely picky eater, which is one of our biggest struggles right now.  He's not yet potty trained, although I feel like we may be able to give that a try very soon.  His communication is probably the hardest thing right now because he just doesn't know how to tell us what he wants or needs.  This is getting better and we feel like he's making progress.  He will sometimes walk closely to walls and look out of the corner of his eyes.  Or do other little quirky things like this that seem so silly, but there's obviously a reason for it.  He isn't obsessive over anything specific, but he does love balls, balloons and bubbles.  He's honestly such a happy boy.  We have a lot of hope that with some extra help and attention, he is going to do really well.  The therapists said they think we will be amazed at how much progress he will make in the next year.  I hope they are right!

Since this is all so new for us, I have so much to learn.  I found a workshop around me a couple weeks after his diagnosis.  About 5 minutes into it, I had tears running down my face and I almost got up and left.  I didn't think I was ready for it.  But I stuck it out and I'm glad I did.  I hope to be able to attend other things like that one in the future.  I also love reading other blogs and connecting with other parents so feel free to reach out to me if you want to share your blog or Facebook page.  I would love to follow along in your journeys.  I have enjoyed reading all of the other stories in this series and when I thought about if I should offer to share our story, I didn't think I'd have much to offer since we're so new to this.  My feelings are still so raw and I was almost embarrassed to share them.  I feel like my emotions are constantly going in a circle - grief, denial, anger, depression, jealousy - they're all there and sometimes one of them sneaks up on me when I'm least expecting it.  These past four months have been full of frustrations from trying to get him services at the school, to finding out our insurance wouldn't cover therapy, to mountains of paperwork, to people not responding to my phone calls.  The doctor was right.  It seemed like every day there was a new battle to fight.  But I have my gloves on and I'm ready for battle because my son deserves it.

Thank you all for reading!



Follow Amy's journey at her FB page, New Normal, Same Sweet Life and also at her blog, with the same name.

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to join us daily at the GJOP page. 

Friday, January 8, 2016

Somewhere on the Spectrum. Written by Just Another Mama

Somewhere on the Spectrum

Jessie was and will be my 1st and only pregnancy. Being the internet mom I am, I googled everything and tried to go super healthy for it. I quit all soda, started eating right and doing exercises. I even stopped going down stairs to my bedroom near the end because it was so bad for you according to the internet.

Once he came I was so in love. I look back at his pictures and see someone different. He couldn't keep any weight on him, and looked like a skeleton. That was the start of our problems. 

Since then Jessie has had more hospital visits in 3 years then the rest of my family combined. Both him and I got staph, he had surgery at 2 months for a hernia. And shortly after we figured out that my staph was so bad that I was admitted for a week. At this point he was taken off breast milk, and he sudden gained weight and lost his jaundice. But little bouts of colds, and infections plagued him for years. I wasn't sure how much of it was me being a 1st time mom and freaking out, or how sickly he really was. 

Once he finally started to mellow out I started looking into autism. From the start if he started to babble, we would try to talk back just like the books say. He would stop and not make a sound for hours. All toys had to be upside down, and he would like up blocks for as long as we let him. But when I saw kids his age at work acting so different that's when I knew we had to do something.

In April of 2014 we saw a professional, and not even ten minutes into the meeting he knew. At the time he was showing many of the "classic signs". Spinning wheels, only voicing certain sounds, and the sorting were big hits. We were lucky enough to get our meeting early on, and on the way home we even stopped at the early intervention program to get him signed up right away.

And I think that's what did it for him, before he was 2 years old he started getting weekly therapy visits. And we found another program that lent out "toys" for disabled kids to try before being bought. Being out in the middle of a national forest this is the best we can get without spending hours driving. But this has been amazing for Jessie. One of the toys we were lent was a Ipad, and Jessie's language took off. He had been working on signing and using P.E.C.S with the therapist but nothing really stuck. The Ipad slowly but surely has been dragging words outta him. 

Unfortunately that program ran out in August for him, but we picked up where they left off and got him his own Ipad with a few different communication apps on them. Like before nothing seems to stick too well. But he is so open to anything now. And I thank his therapist for that, she was amazing. She pushed right to the limit, but at the same time pushed that limit farther each time. And was able to calm him down right away. Jessie started not allowing anyone in the house, or anyone to touch him. And how he can't go 1 hour without grabbing onto one of us for a hug.

We tried having him in daycare to help with his socialization, since we are already hermits, and we didn't know anyone that could keep up with his needs. But that was a total fail. Yes he learned to stay in the corner and put toys away and sit nice at snack time. But there was no progress with dealing with other kids. If any came near him he would yell and hit them until they left. He still isn't doing too well there. When at the playground, if another child shows up he needs to leave right away. Even though he is now in a proper preschool he just can not handle children. Adults are fine, but young people seem scary to him. I, hoping he can work through this in some way as they are not going away. And I just don't believe in home school, people need social interactions.

All through this I worked way too much, to the point of only seeing Jessie for up to 2 hours a day if I was lucky. And went through some horrible depression. I'm finally getting the help I need, and stepping back from work. But I never imagined like would turn out this way. And while I hate what he has to live through I love every odd thing he does. The weird goat like happy sounds, the need to have the lights out with a "good night" no matter what time it is. And even how passionate he is about water, though it terrifies me at the same time. 

I know that he is going to grow into a amazing person. We just need to give him the time he needs. And that's hard as a parent to have to wait for your child to get better at something. Last year he couldn't tell me anything. Now he leads me to what he wants and that in its self is amazing, and totally worth the wait. So Dad and I will keep waiting for Jessie to catch up, even if it means a snail crawl sometimes, and a brisk run at other.


**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to follow us daily on the GJOP page.

Sunday, January 3, 2016

Somewhere on the Spectrum. Written by Dana


Somewhere on the Spectrum

I'm Dana, mom of 5. At this time, 4 have autism diagnoses.

We had our first daughter, K, in 1996, one of those “easy” babies and toddlers that everyone dreams of. She was quiet, eager to please. Walked right before her first birthday, spoke in sentences before she was two. She was reading and writing on her own before she started kindergarten at age 4.

In 1999, when she was two, her younger sister, M, was born. As an infant, M didn't like her feet being touched, but yet she wanted to be held all the time. She scared the heck out of me when she was a few weeks old, when I had a panic that she was being affected by carbon monoxide in our house and it was making her so drowsy that she didn't startle when a smoke detector went off. I sent my husband out in the middle of the night to buy new carbon monoxide detectors and turned out, it was just her not being startled by loud noises. This child was walking by 10 months old, and running by 11 months.

A few years later, I couldn't make it through a grocery store without M shrieking as she spun in circles, or pushed all the shelf price tags together into one jumbled mess. Keeping her in a shopping cart or stroller didn't work as she could escape any child safety belt, and with my husband deployed I had no choice but to drag her with me to the store.

She also had a noticeable speech delay. After a year of watching for her to hit a developmental surge and gain new speech, our pediatrician suggested that we have M's hearing and speech evaluated. A week later, they called and offered me a slot in a multi-focus child study clinic and I gladly accepted. Over the course of months, M was evaluated and assessed by speech pathologists, occupational therapists, developmental specialists, and more, both alone and in settings with peers. During this time, I attended parent meetings to fill out forms and discuss our day to day life. 

At the end of the clinic, she was given a list of diagnoses. Profound speech and language delay. Motor skill deficiencies. The most sneaky was PDD-NOS. I had to ask what this was, I knew no one that had a child with this, and back in 2002, the internet was not quite what it is today but I still found the scary word. Autism. She started preschool that fall in a special education setting, with a school district that, at that time, was going overboard to allow accommodations for kids. I'm really grateful that they did because it gave her such a great start.

In the middle of these months of evaluation, our third child, L, was born. It was different having a boy after two girls, and I was often told not to compare his milestones to those of the girls' because, “boys develop at a different rate”. He never really crawled, went straight to walking at 9 months old. By age two, I saw similar quirks and behavioral differences that made me suspicious so I asked our doctor for a referral for an evaluation. Again I was told that boys and girls develop at different rates so don't sweat it.

When L was three, in 2005, I said enough and went to our school district for an evaluation and turned out I was right, he was showing delays. His IEP was listed as developmental delay, with speech and language delays. He started preschool and I used the school eval to convince our doctor to put in the referral, not that it did much good. 


After 45 minutes with the specialist, I was told that I was spoiling him, because he was the only boy, and I needed to use better discipline methods so that poof, the behaviors would go away. Only, they became worse. He slept from 4 am to 8 am, no naps. He wasn't hyper but yet he was always on the move.

During this time, my older kids were seeing a therapist on a weekly basis. M, as behavior therapy. K, because she talked to imaginary friends at school, pretended to have a horse sitting under her desk. M started having issues with school, she was unable to focus and was falling behind. I made the decision for her to start medication and this meant seeing the psychiatrist in the office. As an aside, the psychiatrist and the therapist mentioned that they saw signs of Asperger's in K, but I didn't pick up on the clue. She was a straight A student, was in the gifted program, just had some idiosyncrasies. Don't we all have some? After all, she saw the same accredited professional that had called L a spoiled child, and I was assured that the only issue he suspected was dysgraphia. By now K was 9, M was 7, and L was 4. Year was 2006.

Along came C, in 2007. The same year, my husband retired from the Navy. We moved 160 miles away, meaning a new pediatrician and a new school district, one that wasn't as accommodating, and wasn't nearly as nice. One of my first encounters with the vice principal involved her telling me that L needed help to function in school, and she suggested I talk to our doctor.

L and I went to our first meeting with the new pediatrician and her first comment, as L hid under the exam table and refused to talk to her, was that she saw multiple issues at play and felt he needed to see a developmental professional, and soon. Within 6 weeks he had his first appointment with the Kluge Center at the University of Virginia. Hours of appointments and we walked away with the diagnosis I knew was there from the time he was two: Autism. L was now 6 years old, the year was 2008. I took this diagnosis to our school and was curtly told that I went “too far”, and that she only wanted me to have him get some medication. The battle with the school, the vice principal, the director of special education for our county, was long and in the end, I pulled my anxiety filled child from the school.

With two separate kids that have diagnoses, I thought I had a grasp of what I was dealing with. Between them they have enough similarities and differences that when I didn't see these in C, well he must be in the clear. Average. Neurotypical. Except, he wasn't. He had his own quirks, jumping off furniture, destroying toys rather than playing with them. A compulsion to touch vacuums and carry a USB cable around. This thing we jokingly refer to as “lack of self-preservation” as two year old C jumped out the front window of our house, constantly tried to jump down from the landing of our staircase, ate glass bulbs at the dentist office. The only child to need stitches, many times. From the time he started walking at 8 months old, everything was at a run, like a tornado at full speed. When he wasn't raging (in what I now recognize as his own unique meltdown), he was the funniest, quirkiest kid of the bunch.


By the time he was 3, the rages were unlike anything I had seen with the older kids. I started suspecting ADHD, really strong ADHD with an under current of anxiety. Our pediatrician submitted a referral to our insurance and they selected Children's Hospital in DC. I spent a year trying to get his name on the wait list for an appointment before saying heck with this and contacted UVA, where my older son was seen. We were able to grab a cancellation appointment shortly after and off we went expecting to come home with confirmation that it was indeed ADHD. We saw the same developmental specialist that L had been seeing for a few years, and she hit me with the news. Asperger's, with anxiety. I was not expecting this, but it explained the differences, the clues that I didn't pick up on (hello, vacuums!) C was now 5, and was 2013. 


Backing up a year, in 2012, baby N was added to the family. Because there was always a new baby before an older child had a diagnosis. (though no more here, baby N is called that for a reason, he is the baby of the family) He spends as much time at doctor's offices waiting rooms as he does at home, at least it feels that way.

Also in 2013, K, at age 17, seemed to be quirkier. There was some behaviors that had cropped up that concerned me. She started seeing a therapist, and after months of no progress, changed to a different therapist. I couldn't deny my suspicions any longer, and I asked the new therapist about the possibility of Asperger's. It was hard to say out loud, and even harder to have someone agree with me. My first attempt to make an appointment for her was met with surly attitude so I called UVA because I had no idea where else to turn. My call was transferred to the social worker and she took it upon herself to contact the specialist the boys see. The doctor offered an open appointment, two days later, for K, and I jumped at the chance. I knew going in what we would be told but it didn't change the finality of the words. Asperger's. ASD level 1. I have incredible mom guilt that for a decade, the signs were there but soft, not loud blaring outbursts that demanded our focus as it did with the boys and M. She was functioning really well, then not so well, and then after puberty, gradually got past the point that her coping skills could cope.

In March 2016, three year old N has an appointment for his own evaluation at UVA/ Kluge. I see some signs but hold out that hope that maybe he's “just” quirky, or copying behaviors of an older sibling. As N gets older though, there is less doubt. There are already strong delays that will require occupational therapy and he's on a wait list at the same office his older brothers attend. As with K and C, there is no speech delay. 

Each child has their spectrum similarities, mostly social skills, and so many differences that life is never boring. K is the artist, that pulls loose strings out of every single piece of clothing. M is the musician, one I could easily see raging and breaking a guitar on stage. L remembers every single thing he hears, while struggling to read. C makes us laugh on a daily basis, except when I'm replacing an iPad cover for the 5th time in just a few months but hey he potty trained just before his 8th birthday.
I'm fairly certain my husband is somewhere on the spectrum. I've bugged my therapist (because you know that with this household, mama needs a therapist as well lol) and my doctor repeatedly about whether I'm also on the spectrum. No, just kind of quirky in my own ways, but not quirky enough for spectrum quirky. We each have siblings that have a child with autism but none that have more than one child on the spectrum. It's our family quirk. 


Dana's Family of Five.
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Friday, December 18, 2015

Somewhere on the Spectrum. Written by Kera Washburn

Somewhere on the Spectrum
Kera's Daughter

My daughter, who is almost 12 now, has autism. She is afraid to swim, so she attends year-round swim lessons. Each week, the teacher asks her to jump in the deep part of the pool: “On the count of three, I want you to jump in, okay? One…two…” She pauses before three, and begins the count again. “One…two…THREE!” Enthusiastic threes aren’t enough for my child on the spectrum. Jumping into a pool means my daughter is going underwater, facing the biggest fear of her life.

Eventually she did jump in—and after resurfacing, she scrambled for the wall, screaming, no doubt traumatized, like the fear had been delivered from her head and born into her body. It broke my heart to see her this way. But this first plunge took her one step closer to feeling normal about swimming, and every plunge thereafter has purged a layer of fear, and will eventually give way to normalcy.


I have three redheaded children. My first child, a girl, was born on her due date with no known issues. Five years later, after many developmental delays, she was diagnosed with autism. My second child, a boy, was born at a healthy weight, with two large marks on his stomach. Three weeks later, he was diagnosed with mastocytosis, a rare blood disorder. My third child, a boy, was born once ounce heavier than his brother, but had trouble nursing. Three hours later, he was diagnosed with a bilateral cleft palate. 

As you can see, normalcy isn’t something I deal with as a mother. But it became normal the more I learned about them. Just like my daughter, I’ve stood on the edge of my doubts as a mother, wishing I didn’t have to swim the unknown waters of my children’s diagnoses, wishing I could just have normal. I never expected to have children who had challenges, who weren’t normal in the eyes of the world. Yet here I am, with three differently diagnosed children, treading an ocean of uncertainties with a tide I have no control over, struggling to keep my head above these waters of isolation, confusion, and fear. We all stand on our own “edges of normal” for a while until we are ready to jump into the uncertain waters. For this post, I want to focus on my daughter with autism.

Before my daughter was diagnosed with autism, my mind was clouded with concerns. I wondered why she didn’t smile all the time or make good eye contact. I worried about her delayed milestones. Instead of facing these worries, I tucked each one neatly into the farthest corner of my mind, a hidden pocket in my brain, thinking that if the worries rested there, they might not amount to anything. Besides, facing these concerns might mean my cream-faced, button-nosed redhead wasn’t normal, and I certainly didn’t want that. Normal was safe and predictable, and in my comfort zone. 

So I tiptoed on that edge until I was given the first push, or nudge, closer to the edge, by a neighbor who knocked on my door when my daughter was 17 months old. I invited her in, and she sat down on my scraggly thrift-store couch with a very worried look, and said, “I think your daughter has autism.”

My hidden brain pocket was ripped open in an instant. Every worry I’d had since her birth was thundering before my eyes, and soon that thunder gave way to rain. Tears, sobs, and big heaving breaths filled that tiny apartment living room. Hugs were shared, and after our goodbyes, I sat with my redhead on my lap for a good hour until the rainfall dissipated. I tried telling my brain that what my neighbor said wasn’t true. Then Google became my new best friend—sometimes it confirmed my hopes, other times, it confirmed my fears. So I said goodbye to Google and kept walking the balance beam between normal and un-normal.

Then I got my next push toward the edge, this time from my mom. She gave me a book, which I devoured and highlighted and dog-eared and margin-scribbled. Then came an official diagnosis of sensory processing disorder, and the following year, the autism diagnosis. 


I stood looking out over the edge into the giant ocean of autism, and had no choice but to jump in. And while treading the choppy waters of a fresh autism diagnosis for about a year, I finally set foot on an island of self-discovery: maybe she wouldn’t be considered normal to everyone else, but she’s normal to me because she’s mine. This was going to be my new normal—I could either embrace it or be afraid. 

Like my daughter’s fear of water, un-normal things can’t be normal until you face the unknown and accept it as truth, as reality, as your inevitable life. You have to jump in all the way.  So I ask you, what is normal, anyway? Who can define normal? Normal for whom, compared to what? Doesn't what you've been given become normal once it's understood and accepted? Normal is so relative.  I might have teetered on the edge of normal in the beginning, because facing uncertainty is difficult.  It wasn't until I let go of my idea of normal and made the jump into the vast ocean of my fears that things became normal. And after what I've been through, I must say, I'm a really good swimmer now, too. 



Kera's Family.
The Special Reds: Autism, Mastocytosis, Cleft Palate

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to follow us daily on the GJOP page.