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.

Friday, December 11, 2015

Somewhere on the Spectrum. Written by Debra Hughe

Somewhere on the Spectrum

For many years I wanted to tell our story, I never got around to it. You know how it is, life takes over and there are not enough hours in the day. In many ways I wasn’t ready to write it down, I’m not even sure I am now. Nobody likes to read in black and white what has happened, what you have been through. Writing it down make it seem more real even though we live it every day. To be honest I never knew where to start either. There is so much to fit in, it is hard to break it down in to a snippet of who we are and what our daily life is like but I am going to give it a go right here, right now. 

I am married to a wonderful man, Steve. He is my rock through everything we have been through and he will be there for whatever the future holds for us as a family. We have two beautiful boys who are our world, they brighten our lives every single day. They each have their own battles that they face on a daily basis. Between them they have a complex variety of conditions/disabilities. 

Harrison is my eldest, ten years old. He struggled with developmental milestones including fine and gross motor skills and his speech was delayed. At around 18 months old we knew there was something behind all of this but convincing anyone to listen was hard. Our parenting skills were questioned, we were made to feel that we were awful parents, being over protective of our son and over reacting for no reason. We fought long and hard to be listened to, gathering evidence to show what we were seeing at home and eventually by the time he was five years old he was diagnosed Autistic Spectrum Disorder and Tourette’s SyndromeA year later he was to gain another ‘label’ after being diagnosed ADHD also. He struggles socially and needs a fairly rigid routine to get through the day. His behaviour can vary and he can lash out uncontrollably if it’s all too much for him. We think his tics are getting worse and are watching closely as he seems to be developing a swearing tic. I watch him on a daily basis astound me, however there are many struggles which often brings me to tears.  I am now watching him grow (above me lol) into a wonderful young man, with no awareness how cruel this world is and potentially how he may be judged or even bullied for the rest of his life for conditions and disabilities he never asked for.

Aiden is our youngest, he is eight years old. He hit all his milestones as expected. When he was around five years old we struggled to get a sleeping pattern established with him. He was always worried and had to work through things. It was like he had to make sure certain things had been done, that everyone was ok before he could even attempt to sleep. It was a rare occasion that he actually slept well. Aiden was always agitated and anxious, at times he would do things that nobody would expect a five year old to do. I remember we were having a bad morning with his brother, so Aiden went to the kitchen and made his own packed lunch for school because he didn’t want me to be rushed or worry about his lunch because, in turn, this would worry him and make him anxious. Again, it has taken us years to fight to be heard and again our parenting was questioned and we have had awful support. He is now eight and only this year got his diagnosis of ADHD and Anxiety Disorder. I often call Aiden my withering flower, he can start off upbeat but deteriorate so quickly and then stay there for days struggling to get himself back on track.  Aiden makes my heart ache. The not knowing how to help him upsets me the most. I struggle with his anxiety alongside him, but we fight together in the hope that one day he will be able to get a handle on it and learn some coping techniques and not let it get to him in the way it does whilst he is so young. 

Daily life can be a constant battle when you have two boys that are so different with their conditions. It can be both physically and mentally draining. Add to the above that I am now diagnosed as having Fibromyalgia, a condition that is debilitating when even the smallest task needs doing. It has rocked our world with how it affects me every day in both mind and body. There are times I am so overwhelmed by it all, the lack of support in some areas for parents is shocking. We are out there trying to survive, hanging on to the friends and family that understand and help us when they can. We put up with ignorance and bullying from others who think its ok to judge a child for a condition they can’t see. However saying all this and the struggles I and my two boys go through, I am very lucking to have two amazing to boys and I am lucky and honoured to be called their mum. They have a fantastic father who is my absolute rock, my support, my shoulder to cry on. He is the glue holding us all together whilst we battle our own demons as such. 

If after reading my story the only thing you take from it is that Invisible disabilities are so hard to live with, then I am happy that you have taken the time to read this and maybe you could share it on so others can learn that not all disabilities and conditions come with an obvious ‘look’. Next time you see a child doing something that you may think is ‘being naughty or disrespectful’ maybe stop and think perhaps they have a condition or disability you cannot physically see and that in fact they are not in control of themselves and far beyond reasoning withMaybe even attempt to imagine how the parents are feeling living with this every single day, how their heart is breaking because all they want to do is comfort that child and take it all away but they know they never can.

Thank you for reading this. You can follow our crazy, complex but amazing journey at my page, Foggy Spectrum on Facebook. 

The Huge 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 follow us daily on the GJOP page.

Friday, December 4, 2015

Somewhere on the Spectrum. Written by Lindsay Wieand

Somewhere on the Spectrum

When I was pregnant, I pictured many “future” memories, from taking my son to LA Galaxy soccer games, to dancing with him at his wedding to “What a Wonderful World.” I wanted him to be well rounded, athletic, scholarly, and independent. Essentially, I had unrealistic expectations for him, but they were the same goals that every parent has. I wanted more for him than what I had. I wanted him to have financial security, but not so much that he wouldn’t know the value of hard work. I wanted him to know the importance of an education. I wanted him to be a leader, who would gladly defend the underdog. I pictured family holidays, school dances, and sleepovers. I would fulfill my role as his mother until he was old enough to venture out on his own, and I knew I was born for this. I was here to be Jackson’s mother.

Regardless of my “predestined” role, motherhood was not easy. Jackson struggled to take to breastfeeding. His bowel movements were irregular, and his sleeping was pure chaos (It would take me until he was four to solve his sleep issues). When returning to work at six months, he was waking every hour. I tried numerous calming strategies from the Pick ­Up Put Down Method from The Baby Whispererto the Five S’s from the Happiest Baby on the Block.I gave up dairy and soy in order to help his digestive issues, and this brought some relief. I slowly moved into a life of seclusion without even realizing it. I couldn’t admit to my friends, or maybe myself, that I didn’t have a grip on motherhood. I was failing at it. While friends were venturing out with their kids, I stayed at home. Jackson would become overwhelmed in certain situations, and there were many times I had no clue how to fix it. These months were just about survival, and looking back, they were kind of a blur.


When Jackson was 13­months, we were over at a relative’s house for a family function of some kind. He was finally meeting his cousin. They were both only two weeks apart, so we were excited for the “playdate.” This small moment had lasting ripples, and it would take my husband and me two days to fully talk about the experience. We realized, when watching our son notinteract with his cousin, how developmentally behind he was in speech. He had maybe three words, and his cousin was identifying characters in books, expressing his needs, and offering verbal affection to everyone in the room. This short visit prompted a speech evaluation not soon thereafter and entrance into the Early Intervention Program.

From the beginning, and maybe through divine guidance, my son’s had amazing therapists. We started in speech therapy, but we soon realized that he needed special instruction and occupational therapy. I still had high hopes that he could be fully mainstreamed. I signed him up for a local preschool with a distinguished reputation. He lasted two weeks before I was called in for a meeting. His teachers were caring and experienced. They were coming from a place of compassion, but it did little to soften the blow. When I was told that they were noticing many “red flags” and that he could return only with a full­time TSS, I used the last of my strength to hold back my tears. I didn’t want to cry there. I needed to be strong. I made it to my car, and I cried. I shed tears for the boy I knew I lost. The boy that may never get married or attend a school dance. The one who may never have friends or tell me he loves me. It was a lonely place to be in that moment, and thinking about it now even brings back the isolation I felt.  

I eventually wiped away my tears and moved forward because what else could I do? He needed me to be his strength and his voice, and so I continued on this journey. About two months later, in November of 2014, Jackson was diagnosed with autism and mixed receptive language disorder. In that moment, I remember thinking that it wasn’t so shocking. Maybe I expected it. Maybe I knew it all along. I’m not sure, but I was ready for the diagnosis. I still cried a little. I found myself on the floor of Barnes and Nobles, thumbing my way through the small stack of books on autism. I was lost; however, I felt in my core that we would be okay. I just needed to let go, a lesson that I am often reminded of when trying to “figure out” my son’s needs.

Today at four, he is in a weekly 20­hour ABA therapy program with three Therapeutic Staff Support Specialists. He also gets speech and occupational therapy in his verbal behavior classroom. It’s taken a long time to get to this point, sleepless nights on Jackson’s floor, phone calls with insurance companies, and numerous books on sensory needs. The hardest part for me, in all honesty, was before his diagnosis. I didn’t understand my son or his needs. I didn’t know if he was cognitively aware of what we were doing. I had no idea if he heard me when I talked to him. Once we had his diagnosis, my husband and I spent several months learning all we could about autism. Our son was no longer a mystery. We understood his needs. We were able to predict his meltdowns with accuracy (and hopefully learn to avoid them). We realized that our son was fully capable of learning (and is quite smart), but our methods of teaching him have to be creative and on his terms, not our own. He understood much more than we gave him credit for, and he shows us that often. In the months that followed his diagnosis, I felt like my husband and I became better people. If you let it, autism can push you towards something greater within yourself.  

 About four months after his diagnosis, I started becoming very active in the autism community. I became co­admin for an online support group for other families with children who have special needs. We try to plan playdates and provide information on doctors, insurance, etc. It’s an online family to me, and it feels comforting to be around other parents who “get it.” About the same time, I decided that I was no longer living a life of seclusion. It was time to be a part of our community. Jackson has been to parks, movies, farms, road trips, and airplane rides. These trips are not taken lightly. There is a lot of planning involved, and some anxiety, too. However, with online support, amazing co­workers, supportive friends, our caring family, dedicated therapists, and my “rock” of a husband, I no longer feel lost or alone.


Every so often, I have a weak moment. Sometimes it is something so minor, like hearing a young toddler singing Christmas songs in Target, and I wonder if I’ll ever hear my son do the same. Those moments are still there, and I’m not sure if they will ever go away. Yet, there are so many amazing moments. Those are the moments that fill our lives, like the first time our son said “I love you, too” just last week. Or each morning when he gets a blanket from across the room and brings it to me to cuddle. Those moments are not just amazing; they are magical to us. We are learning not to underestimate our son because he is starting to master skills that we didn’t think he would ever learn. There is a quote floating around on Pinterest by Ellen Notbohm that I often think of when those negative thoughts seep into my psyche, and it helps me to keep life in perspective. “When you lapse into thinking of all the things your child with autism can’t do, remember to add ‘yet.’” 

Jackson

**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.