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.

Friday, November 27, 2015

Somewhere on the Spectrum. Written by Lara Martin


Somewhere on the Spectrum

I became a single mom at 19. My son was born 7 1/2 weeks premature. Devante was very healthy and was home in no time. By age 7 he had been diagnosed ADHD. I married just before his 8th birthday and was pregnant again the following year.

Caili was born full term in 2006. My beautiful girl! Caili had trouble latching on and was overall not a great nurser. I switched to bottles when she was about 6 weeks old and things got better. As Caili got older we started to see some quirky behavior and lots of fears. She became attached to a pacifier at about 15 months when she was teething. At about the same time I tried to move her to her own room. What a nightmare that was! She would play in there during the day but wouldn't sleep in the room. By 2 I had started to get concerned about her speech. I also noticed some hypersensitivity starting to show. Everything had to be just so. She hated loud noises. She had tantrums and melt downs that would seemingly start at random and last forever. She started potty training a little bit at 20 months. Then we moved and it all stopped.

 Just before she turned 2 1/2 I gave birth to Noah. I still had speech concerns so I called our area education agency and got an evaluation. The early intervention teacher came and said she wanted to work with her and could she bring the speech pathologist. I was thrilled! I quickly became disappointed. The speech pathologist said she was age appropriate. A year later during a hearing recheck, Caili had a 20 minute meltdown when she had to go in the sound booth. The audiologist asked if that was normal. When I said yes, she referred us to the AEA for another evaluation.
At the evaluation, Caili was found to have speech delays, fine motor delays and poor eye contact. She started special ed preschool within a few weeks. Caili could talk but she was hard to understand. She also began to refuse to talk to almost everyone except her older brother and myself. A few months after starting school, my sister in law came to me and asked if Caili was autistic. She had been concerned and did some looking. She believed that Caili fit enough of what she had read to talk to me about it. Within a couple days of that my pediatrician, while at my nephew's appointment, voiced the very same concern about my daughter. It took 3 long months to get into the center for disabilities and development for her official evaluation. Of course she chose that day to be talkative and social! I was told she was too social to be autistic so they never tested her for it. But she was diagnosed with fine motor delays, expressive and receptive language delays, phonological processing disorder, sensory processing disorder and disruptive behavior disorder. The OT said the SPD was to blame for the rigid behavior and autistic like behavior. She was convincing so I bought into it. It was also suggested that she had selective mutism. Once home I got her set up with speech and OT and researched SPD. All of a sudden, Devante's quirks that I had explained away as being because of his prematurity made so much sense! He has SPD as well. Caili was discharged from speech a year later and OT about the same time. She had weak hand muscles but I was told she was too young for them to work specifically on that.

In the meantime, I was noticing things about Noah. He started to develop his speech on time but sometime between probably 15 and 18 months he quit talking he was completely silent for a month except to cry. When he did start talking again he was impossible to understand. It took until he was 2 to get him screened. Caili's one speech therapist kept telling me to give him time. I listened for a little bit. But when his frustration level kept mounting I knew I had to act. He started speech therapy and early intervention at 2 years 2 months. He started OT at 2 1/2. Our AEA teacher didn't believe me when I started saying I thought he was autistic.

 In my heart, I knew. I took him to the center for disabilities and development just before he turned 3. We saw the same psychologist that said my daughter was too social. Noah played with his trains (he was and is beyond obsessed) while we talked for a few minutes. Then he was fine. When I wouldn't let him leave he melted big time! I was so glad to have him show his true colors. He ended up falling asleep from exhaustion. Even though she didn't actually get to do any testing, she had no doubt that he was on the spectrum. I was even asked to participate in a telehealth study where we would do some ABA therapy through video conferencing. At that visit he was also diagnosed with fine motor delay and weak hand muscles, expressive and receptive language delay, phonological processing disorder and sensory processing disorder.

A few weeks later Noah started special ed preschool. I applied for SSI and we were immediately approved. Caili started kindergarten that same year. She had lost her IEP at 4 because of some standardized test that said she was age appropriate. Some areas were at the very low end but still age appropriate.

 That school year, OT said they had noticed Noah "w" sitting and wanted him to see PT. They said he had weak hip muscles and he started PT. I had them see Caili as well because she sat like that all the time and was much more pronounced than Noah. Caili was diagnosed with weak hip and vote muscles and motor planning delay. Only 2 months of PT and she was done. One on one Caili does well, it's pulling it over into everyday things that she struggles with. Noah did a little longer in PT but not much.

 I still saw so many autistic traits in Caili. One day I read an article about girls on the spectrum. They could have written it with Caili in mind. I emailed the psychologist and expressed my ongoing concerns. She sent me a questionnaire to fill out and we scheduled another evaluation. The score on the questionnaire showed that she "flunked." At the appointment, she was given the ADOS test. In order to get an autism diagnosis, she needed to score a 7 or higher. She scored a 4. I was told she had Broader Autism Phenotype. A fancy way of saying she had autistic traits but not enough to diagnose her. That trip she was also diagnosed with a tic disorder and anxiety.

Noah went that same day for the cognitive tests that we weren't able to do the year before. He was upgraded from expressive and receptive language delays to mixed expressive/receptive language disorder. He was also diagnosed with a verbal cognitive deficit at that time. The psychologist said that because of the severity of his language delays, Noah might not be able to read.
Caili began counseling to help with her anxiety but no one believed me that she was still struggling developmentally. It wasn't until 2nd grade that the teacher saw her fine motor issues. Caili went back to OT for a few months and was again discharged. She still struggles.

I had her evaluated again in 3rd grade by a local mental health facility. That doctor agreed that she just wasn't autistic enough for a diagnosis. But he said her results were suggestive of ADHD. He also told me she has functional memory issues. Caili started seeing a new therapist that comes to her school. She says that some days, she sees the autism and other days she doesn't. She has some concerns about Caili's behavior. She's not a problem. She just retreats into her own world to cope with stressful situations. She also has a "princess" mentality and thinks that everything should go her way.  We are working on that.

Caili finally qualified for a 504 last year in 3rd grade. Most of it is to help with her sensory issues and anxiety.

 She's in 4th grade now and holding her own. She just started playing the violin and loves to read.
Noah survived kindergarten with lots of help. In first grade he was reading grade level books. Now he's in 2nd grade. He still has an IEP and gets help with math and reading and has a handwriting goal. He gets OT 2 times a week and speech once a week. I was just told that he will soon be discharged from speech as he is finally age appropriate! It took 5 years to get him there but we are there. My once silent little boy talks up a storm! And he's so smart! It makes me stop and almost cry when I hear him playing and talking out these elaborate ideas.

SSI recently reviewed his case and determined him to still be disabled. It was bittersweet. He's come so far but I know there's a long road ahead still. Keeping SSI means that he can keep getting the help he needs. My pediatrician though, thinks that Noah should be reevaluated. She thinks that because he talks so well now he must not be autistic anymore. Whatever! I didn't bother wasting my time trying to argue with her.

Anyway, I know that there are bumps along the road that I didn't get to. We've lived on next to nothing. Noah was recently diagnosed with low ferritin. (A protein in the blood that binds to iron.) He also developed a bald spot that was diagnosed as Alopecia Arreata. Noah had a lump on his chin that I fought for 6 months to get him his CT under sedation. Thank God that it ended up being nothing and the lump is going away.  And before much longer he should be finally getting his tonsils out.

There's still more but that's enough for now. Lara


Lara's Children

**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.

Tuesday, November 24, 2015

2015 GJOP Parents Toy Review

Here is a list of toys that parents of Autistic children on the Grape Jelly on Pizza FB page put together.  I've broken them down into categories and attached links to most.  Please do research before making a purchase.  These links are to show you what the toy looks like and by no means is the cheapest price available.  If you want to add any additional toys, please leave a comment with a link, preferably.

Thank you and happy shopping!

MUSIC
Instruments

SENSORY
Wubble Bubble Ball
Trampoline
Crash Pad or Bean Bag Chair
Balance Board Popper
Ball Pit
Body Sock
Bug Light
Laser Stars
Finger Flashlights
Bubble Tube Fountain
Lava Lamps
Plasma Ball
Light Up Funny Face Balls
Light Doodler
Ocean Wave Night Light Projector and Music
Star Night Light Projector

BUILDING SETS
K'NEX
LEGO for big kids
LEGO for little kids
Gears!
Mega Marble Run
Snap Circuits
Laser Pegs

IMAGINARY PLAY
Littlest Pet Shop
My Little Pony
Hero Smashers
Puppets
Star Wars Anything
Shopkins
Hot Wheels
Radio Control Car

VIDEO GAMES
Skylanders
Wii U 




Friday, November 20, 2015

Somewhere on the Spectrum. Written by Julie Clarke

Somewhere on the Spectrum

There was only a few more times I could hear the words “She’s just a late talker”. At just over two years of age Eliza had no clear spoken words and her behaviour could be unpredictable. Friends were full of support and advice constantly telling me reasons like “well, she’s an only child and she has no sibling to learn from” or “she will speak when she is ready”. What each of them forgot or perhaps didn’t even know was that we had had some speech and around 13 months of age it disappeared. We had the baby babble including the mama, dada and it was gone. Barely a sound crossed those lips unless she was crying for something. (I will mention this was pre MMR vaccination as I am sure people reading this will be thinking along the ‘vaccine injured’ route). We saw a paediatrician when she was two and a half and even he announced “it’s just a speech delay” so I argued and told him he was wrong, that this was more ‘speech come and gone’, this was some kind of regression. He agreed to send us to speech therapy and after a few months the therapist sat me down and asked if I knew what Autism was. Hands up, I didn’t!! I knew the word, knew it was something to do with special needs but that was it. I held it together until she left, heard her say she would report back to consultant, arrange assessments……. My head was spinning. The minute she was out that door I went and looked up Autism on the Internet. The more I read, the more I was sat thinking they could have written this based on Eliza. My husband buried his head in the sand for months, refused to believe there could be a lifelong condition behind the lack of speech, the lack of eye contact and the major meltdowns we were getting at times. He even accused me of being led by the specialists, that they were brain washing me in to believing she had autism. It was his way of both breaking down and dealing with it as best he could. Me? I had no choice but to carry on, attend all the appointments and try and understand what was happening. I knew by now that in my head and heart we were going to get that title, that label, that diagnosis that would change so much for us.

Diagnosis day led to a mixture of sadness and relief. I was sad because I feared the future for us and her. Panic set in about what school to send her to, who would understand her needs, how would we communicate with each other, how at 3 years old she could have a lifelong disability…… so many questions in my head at one time.


The relief was knowing there was a reason behind her lack of speech etc. and that there was early intervention available that could change her life and help her social and communication skills. Thankfully at this point my husband had caught up as such and was realising that he could not deny his feelings any longer and that he needed to catch up for the sake of us as a family unit and for her, that not only did we need to be in the same book, we needed to always be on the same page. I gave up my career as a nurse as finding any child care with a special needs child is either non-existent or came with a premium price tag!  I learnt Makaton signing and how to use PECS (Picture Exchange Communication System) so we could open the doors for more communication for Eliza. We were incredibly lucky that the area we live in had such a great early intervention team and that the nursery we chose were extremely helpful and supportive. With the local special school full for nursery age, Eliza attended mainstream for a year and was given a 1-1 Teaching Assistant pretty much the entire time she was in school. She had some great days and she had some bloody awful days but never once did the staff give up on her and they never stopped being calm, kind and so very
patient. Some speech started coming back during this year although very random indeed. One week it would be words like mummy and car, the next week would be something like zombie or catfish! I personally didn’t care what she said, it was all speech and all words. A couple of years later she would say her first swear!!!!!! Not proud of the word that she copied from someone else but strangely proud that she used it in the right context and said it perfectly.

After a year at Mainstream a space was available at special school and we took it after discussing the pro’s and cons for weeks of which school was best. I have never regretted that decision ever. She started that school with under 20 spoken words. She is 6 now and this is her third year there. She talks in sentences, can read almost mainstream level, is a whizz at computers and has developed in to a fairly independent, strong willed, cheeky little Diva who knows what she wants and will try anything to get it. She changes every single day. We have had some major barriers to overcome, speech disappearing being one of the biggest. These days it’s the other ‘A’ word entering our lives….. Anxiety! Eliza struggles on a daily basis with anxiety, it can lead to the mother of all meltdowns on a really bad day (By bad I mean she is past comforting and calming, anxiety has taken over and we must ride it out till she can rein it back again). It’s another thing we will work on and help her to overcome or at least learn to live and cope with. No doubt there will be many more things to overcome on our journey, whatever life throws her way we will help her as best we can. We have family and a bunch of great friend that live close to us. They understand as best they can and they are always there no matter what and share the good and bad days with us.

It’s not easy raising any child, let alone raising an autistic child. Autism can make life so complicated and frustrating for her and everyone around her. It’s a complicated life to lead and the reality of it is that there will be days you feel so overwhelmed and you think you can’t cope anymore but you do, you dig even deeper and find something to keep you going. There will be nights that you go to bed and cry yourself to sleep or just lay there because you can’t switch off from the billions of thoughts racing through your head. Feelings of jealousy may grip your very soul and rip it apart as you envy the milestones hit by other children or as their parents tell you how wonderful their kid is doing at school. You will encounter your share of ignorance from others that don’t understand and form their own opinions as to what’s wrong with your child – bad parenting, just needs discipline and nothing wrong, just naughty attitudes. You will sadly get the stares from others that wonder why such a beautiful child is having the most epic meltdown in the food aisle because their favorite drink is not available. You will grieve for what you might have had and even though you may feel guilty for this, it’s normal to feel that way. You may lose a few friends along the way for various reasons but you will find a bunch of friends that will understand and support you, and they will remain by your side no matter what. You will cherish moments that may seem small to others but you know are huge moments for your child. Above all, you will survive whatever is thrown at you. You will be ok and you will learn that there are many of us out there that have been through parts of what you are experiencing and some of us even blog about it in the hope of making you feel that you are not alone. I choose to share our journey with the hope that others will find a useful tip that helps their child or you will read something and think
“ahhh it’s not just us” or “wow, that kid does that thing too”. Please NEVER feel you are alone, there is always someone out there willing to listen and truly understands.

Feel free to join us on our journey at Blooming Autism


   
 **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, November 13, 2015

Somewhere on the Spectrum. Written by Sietske van Schaik

Somewhere on the Spectrum

Our family of five has come together rather quickly.

The eldest, Johnathan, is my step-son. He came to live with us when he was three, in December of 2011. Only a month later, our middle child Thomas was born. It was quite a change, going from just having Johnathan over on weekends to being a full-time parent of two! The first 10 months I was working full-time. I was as a restaurant manager, working 50 to 60 hours a week and wasn't home a whole lot. Dad was at home with the kids, and worked on my days off. Things were hectic to say the least.

I think because things were rather crazy at the time, that we did not realize something was amiss. Thomas was an amazing baby, so sweet, so quiet. Everyone commented what a perfect angel he was. We jokingly said we could never have another child, because there was no way a second one would be this good. He slept twelve hours straight, at 6 weeks old. He didn't like tummy time, so he didn't do a whole lot of that. He just liked laying on his back. He would greet the ceiling fan happily, whenever he came in the room. He loved staring at that thing. His best friend. Toys he had little interest in. He did like to eat.

He would guzzle a 10 ounce bottle and still want more. He started cereal at 4 months old because he seemed so hungry. Yes, we were clueless. Utterly, entirely clueless.

He had these sweet little gurgly coos and when he laughed he sounded like he was choking. It was cute and we had no idea.

It took a while for him to learn to roll over, but he was a big boy. Big boys take longer.

It took a while for him to learn to sit, but he was a big boy. Big boys take longer.

I stopped working when he was 10 months old. Combining our jobs was too much, it didn't work. Dad went back to working 50-60 hours at his job, and I stayed with the boys full-time. Thomas got pretty tenacious about getting into the Duplo bin, little rocker chair and all. He loved mouthing the pieces, and banging them. He learned to say "bye bye daddy" and waved as dad went to work, he did that for two weeks, then seemed to tire of it, and stopped.

Then he learned to stand, around 11 months. And he learned to cruise a bit.. walking took a lot longer. He just didn't feel secure enough to let go. ..Big boys take longer.

He got an ear infection that December, and the pediatrician felt that his ears never really cleared up, so we were sent to an ENT. By February he was getting tubes placed and we got the news that our son had sensoneural hearing loss in the higher frequencies. No idea why, where it came from.. but that surely was why he didn't talk. By March he had little hearing aids.. and Early Intervention evaluated him. He was quite delayed in a lot of things, so a special instructor was to come twice a month for 45 minutes. She taught him how to play with toys, something he had no idea about. She started with teaching him how to sign 'more'. They were quite adamant that he needed to learn to sign. Thomas felt otherwise. It took a year before he started using 'more' unprompted, and to this day he only uses sign along with saying a word. We went to UAB for genetic research, to see if there was a genetic cause for his hearing loss, so we could see if it would worsen or not. So far, no cause found.. but it seems to be stable.

By 18 months we felt Early Intervention wasn't enough, but we didn't know that we could appeal for more. I shared my concerns with our special instructor. I pointed out the strange things Thomas was starting to do. He has started spinning a lot, chewed on everything relentlessly, he didn't copy anything.. especially facial expressions. He was always smiling, even when he shouldn't be. He didn't point, or looked at anything you pointed at. No pretend play. His social skills were atrocious. ..But everything was blamed on his hearing loss. And... we found out I was pregnant with number 3.... Timing is everything.

By 20 months I filled in an M-chat and took it to the pediatrician. Again it was blamed on his hearing loss.

By 24 months I went back. His red flags seemed to be adding up to autism for sure. He was flapping his hands near his face, tiptoed around the perimeter of the room, stared endlessly at shiny objects and LEDs. Thomas was getting more and more particular about food textures, the kid that used to eat everything was now refusing most of what was served. He still had only about 10 words in his vocabulary and most of those were only used to respond to a question. 'Milk?' would be answered with 'Milk!'. "Well, a lot of these symptoms are seen in children with hearing loss, but if it makes you feel better, we can refer him to an autism clinic. Their waiting list is about a year." Ok. Sign us up. What the heck are we waiting for?

Baby 3 arrived. You can't imagine the way I felt throughout the pregnancy. We had no one to watch Thomas.. I did not trust anyone to keep him safe. He needs constant supervision. So Thomas was in the delivery room, with his dad. Yup.. that really happened. I felt so bad for this little baby that was being born into a family that revolved around one little boy.. a little boy that lashed out a lot. I considered sending her to family, for her sake. I worried he would hurt her. Thomas hated her. He treated her like a toy he didn't want. He tried shoving her away, he ignored her. He would throw a blanket over her, so he wouldn't have to see her. He stole her bottle and drank it. He would climb on top of me whenever I tried to feed her. He was jealous.

We continued on with Early Intervention. Every couple of months something new would pop up, something new that would confirm to me that my son had indeed autism. I read and read and read. He was 2 1/2 when we decided to add speech therapy to his schedule. He seemed to finally be interested in communication. He was using 'more please' without prompting and had learned 'go' as well. I enrolled him with our local university who happened to have a communication science center.. minutes from our home. A student clinician would work with him for an hour, twice a week. I was excited! Sadly, Thomas was having nothing of this learning business. Oh, he enjoyed time with Mr. Anthony. He ran the perimeter of the room, squealing. He traced the cinderblock walls with his finger. He stared at his reflection in the bolts of his chair. And the poor clinician just didn't know what to do. After a few weeks Thomas would cooperate a little. He would go through the motions, saying "more please" to everything he wanted. In 12 weeks time he learned... nothing. My son is a stubborn child, wildly independent and too smart for his own good. He needed someone who wouldn't put up with his tricks.

Halfway through our time with the university, I had also enrolled him with Easter Seals. Coincidentally, our speech therapist there was a former student of the University. She assessed Thomas and recommended we have him assessed by the resident occupational therapist as well, for some of his behaviors. I had no idea about sensory processing disorder.. but here it was. Thomas was a seeker, in constant motion. We learned about deep pressure, about brushing and all the things we could work on. He was W-sitting and not crossing midline. I had no idea this was an issue, I was clueless. But within months he was improving his balance and the deep pressure helped him a lot.

Ms. Jennifer, the speech therapist, worked wonders. He said block, bubbles, more, go, please, open. He was talking!

We were doing the gluten free, dairy free thing too. Oh, I thought it was total bogus when we started.. and then his skin cleared up, his bowel movements became more regular.. he was less itchy and irritable. So we stuck with it. We threw everything we had at this kid. He needed to learn to communicate, somehow. I wanted him to be happy.. and frustration was keeping him from being happy.

Early Intervention helped us transition into the school system. An IEP was put together and he would be getting in-home visits from a variety of people. Everyone was aware that I thought he had autism, but without diagnosis, his IEP was based on his hearing loss. Even the Hearing Impaired teacher said that his delays couldn't be from his hearing loss... it was just not that significant a loss.

By the time he turned 3 he learned to jump and use stairs without help.. and I like to think the occupational therapy was essential in that. But.. the speech faded again. He got stuck on 'open'. Everything he wanted was 'open', if that didn't work he would try 'more'.. and if that didn't work he would try 'go'. His progress stopped, again. He got angry a lot, started lashing out. He started hitting and kicking and biting. He was MAD. He refused his hearing aids entirely by now (he was wearing them in therapy only, prior to that). We introduced PECS, hoping that would help.

We started getting visits from the school. Our amazing Ms. DeEtte brought fun into our home. Thomas was delighted. All the preschool tasks he performed with a smile. Sorting by color, stacking pegs, puzzles, books.. he couldn't get enough. Ms. Amy worked with PECS, teaching him to hand a card to her to get what he wanted. He took to it right away. Thomas was requesting bubbles constantly. He would come find you to shove that little card in your hands. Ms. Denise would work with him on his vocabulary. Ms. Andrea would work on writing, gluing, coloring and cutting. We were still getting speech therapy and occupational therapy from Easter Seals too. WHEW! We were constantly busy.. but, Thomas really seemed to blossom. My little toddler was now a preschooler.

The last time we saw his pediatrician, at his 3 year well child check, she finally said that she could see some autistic symptoms.. This July, at 3 1/2 years old, Thomas got diagnosed with autism. We waited 13 months for our appointment, the one the pediatrician gave us just to shut up the overly worried first time parent.. The overly worried first time parent who was RIGHT.

At first I felt overwhelmed, the list of recommended things to do was long. But now we know we need to take it step by step. We've relaxed a little.. learned a lot. Our next step is getting him an AAC device. Ms. DeEtte referred us to Children's rehab, who have an AAC clinic.. Ms.DeEtte is coming twice a week now, because Thomas has taken so much to her. He is copying words and gestures with her. I am so happy to have her.

Ms. Jennifer sadly moved on to another city and another job, speech therapy has not been very good since she left. He's back to using 'more' for everything.. but, he's having a lot of spontaneous speech he learns from copying movies and people. He scripts, a lot.. but it's ok, he is happy. He speaks very, very little to communicate. I just have learned to anticipate his needs and recognize situations he will get upset about. He has been watching Signing Time now that it is on Netflix, and he loves it. He tries to copy Rachel's movements, even though they are much too fast for him. He's really into letters too, right now. He is playing with spelling apps on his dad's phone, sliding the letters into place. He traces writing with his finger, whenever he sees some. He's counting too, verbally. They're not always in order.. but he's trying. I'm very proud of him. I would like for Thomas to be able to attend a preschool program the following school year. I don't know if it is possible. He does have some aggression issues, although they are rare, and usually caused by not understanding what hurts others (he feels very little pain himself) or frustration and anger. He does run off and following directions is not really something he is capable of yet. We will see. I hope an AAC device will help him in this.

Occupational therapy with Easter Seals doesn't seem to be as effective anymore, since he has gotten past his initial issues.. but he really enjoys the sensory room. He is incredibly good at jigsaw puzzles far beyond his age level and things like the game Perfection (shape sorter on steroids). Ms. Andrea from the school system is working still with cutting, writing, coloring, gluing and all that sort of stuff. He's learning.

We've transitioned to pull-ups, since my dear boy does NOT want diapers anymore (I think they are uncomfortable). We're teaching him how to pull them off and put new ones on. We do catch him naked sometimes.. and he has some fecal smearing incidents, which is a fairly recent development.

We have stopped the GFCF diet. Amelia (number 3) is 18 months old and has learned everything her brothers could teach her, including climbing on all the furniture to reach things.. She eats all of Thomas' food and he eats hers. Thomas takes 3 hours to eat, keeping them separated is not really feasible. So far, he doesn't seem too itchy. Both are dairy free, so that is not an issue. Their relationship has gotten a lot better. It's interesting to see how she reached milestones.. and to see that they do have a lot in common. Amelia learned to walk fairly late too, at 15 1/2 months, even though she was cruising early. She doesn't talk much, she knows few words, even though her first words came at 6 months old. She's a bit shy to strangers, but very social with those she knows. She likes to copy and learn from her brothers. Thomas does enjoy her company now, even though he still knocks her over from time to time.. shoves her out of his way, uses her as a stepstool etc. I have to watch them pretty closely.. but they're really a pair now. Double trouble.

Johnathan is receiving occupational therapy too now, since his handwriting is pretty bad.. he has some clear sensory issues too, mostly displayed by endless vocal stimming and constant moving. We are having him assessed by the school, so he wont have to travel all the way to Easter Seals for OT.. we honestly feel he may be on the spectrum too. He does well in school, but impulse control and following directions are really tough for him.

All three of these kids are dreadfully smart and I feel like I am constantly having to be one step ahead. It's a delight, and terrifying. They're happy and loving. Everyone sings and dances a lot and we break out in random dance parties often.. Giggles abound. In this journey I have figured out that I am on the spectrum myself.. I think it affords a certain understanding for how the boys feel. Whenever I am tired I can't stand to be touched, smell anything, hear anything. I get overwhelmed. So we lead a pretty quiet life. We don't leave the house too often, other than to pick Johnathan up from school. He would like to go to the park more often, but with three kids I feel like I don't have enough arms at times. Amelia will run one way, Thomas the other. Once Amelia is older and not as likely to just run off, I think outings will become more likely.

I haven't been posting as actively on Facebook, since we're busy a lot, but there are adorable videos and pictures on our page 'The thing that goes bump'.

-Sietske van Schaik
Many more videos and pictures on our FB page,
 The thing that goes bump.

**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, November 6, 2015

Somewhere on the Spectrum. Written by Holly Noel


Somewhere on the Spectrum

Hi, my name is Holly, my son will be 14 in Nov 2015. He is on the autism spectrum but didn't get officially diagnosed until he was 12. Officially, in our case, means that the right person from our insurance company diagnosed him.

My oldest sister had two boys and 25 years and 15 nieces later, (I have five siblings), I had a boy. When he was born I already had an 8 year old and a five year old , both girls. Will was a good baby and when he got fussy we could lay him where he could see the ceiling fan and he stopped fussing. As he grew ,we noticed that he never pointed at things and was quiet and liked to play by himself. He liked matchbox cars but didn't play with them like you would expect. Instead he would like them all up and they would be color coded. He didn't want you to move any of them at all. Remember it had been 25 years since we had a boy in the family so we just thought it was a quirky boy thing. I was happy he knew his colors lol.  His favorite thing was playing cards and he would line them up all over the house, end to end. Again, quirky boy thing. Thought he was making tracks for cars.

He never ate much but when he was 3 1/2 -4 , he stopped eating anything. Literally! My mother told me that he would eat when he got hungry, he didn't. I got some supplemental drinks for him because I was worried. We found out his tonsils were huge and almost touching, that's why he wouldn't eat. They took his tonsils out and he started eating a little bit. He never did eat more than a handful of different things. Must be because of all that room in his throat, right?

He would play barbies and house with his sisters for about ten minutes then start lining up his cards. He had lots of cards. He would run around and around in a circle and sometimes sing a few words from a song or a movie, over and over and over..... I would sometimes say that I thought he had autism and whoever I said it to would tell me I was nuts. He could talk and only flapped his hands when he got excited. We didn't know much about autism and had no idea that it was a spectrum! We couldn't go to any store alone with him because someone Always had to take him back to the car . He would come through the doors and after a few minutes, he would start screaming and getting violent. We thought he was just being a brat and didn't want to shop. The guilt I feel from thinking that is horrible. I didn't know he was in sensory pain overload. He Loved being in the pool but hated a bath. I later found out that he had to have the water almost cold or it was too hot for him.  

When he started school, I had to talk to his teachers to find anything out about his day. He never would tell me anything. He was hard to understand when he talked and my girls and I were the only ones that usually understood him. His dad did sometimes. I was told that we needed to stop doing for him and make him say the words. My niece started going to school with him and I would find out from her about his day. I also found out that the teacher was mean and always got mad at him and made him stay in detention during recesses. I talked to the teacher and she said he doesn't turn in homework or doesn't listen in class.

I saw something on TV or a book about autism having a spectrum . I started reading and it was describing my son to a t. He was in fourth grade at the time and I talked to his teacher about it. She could see what I was saying but didn't excuse his behavior. Our school system is very small town, almost 200 kids in high and grade school total! When he got off the bus and walked in the house all hell broke loose. He had a violent meltdown Every day when he got home. My girls would shut themselves up in there rooms and he would attack me or kick holes in the wall. I talked to his Dr. about it and he couldn't diagnose autism so he sent us to a psychiatrist. They sent me to SIU which is about an hour from our home and the closest place that diagnoses autism. A few years ago they apparently only diagnosed classic autism. They told us he just needed speech therapy. I was so angry when we left there. When I saw his psychiatrist , he said he couldn't do the diagnosis but he knew he was on the spectrum. Insurance only listened to SIU.

My son's anxieties and fears and meltdowns were horrible. They put him on Meds and they helped some. The school was no help at all, no matter how many meetings I had with them. We ended up pulling him out of school and homeschooling. I would give anything to have done that long before. I read everything I could about ASD and I felt so alone.

My oldest sister and I are best friends and the only one he is ok with staying the night. I asked my girls about playing with Will and did they notice anything different then other boys. They said he was very literal and had No imagination. My sister and I tried to help him with that because her granddaughter (who lived with her and was his age), was very dramatic and imaginative. She would get very frustrated because he had no imagination. We told him to pretend he was a soldier which he loved. We told him that pretending was believing you really were a soldier. Later that evening my daughter came and got me and said he was roaring and throwing chairs. When he finally calmed and ,as usual, fell asleep, they said he was playing army and my niece wanted to play fashion show. Well, long story short, there are No fashion shows in the army!

He needed more therapies but insurance wouldn't allow it without official diagnosis. His Dr. sent us to Vanderbilt Children's Hospital Autism Wing and at 12 years old he finally got an autism diagnosis. It was a three hour drive, one way. Car rides make his head hurt and his stomach hurt. We stayed in a hotel and he got to be in the pool most of the time so it was ok. When we finally got him into OT and BA and Speech, he didn't get a lot of help. We still had to drive an hour to any of them and again, he doesn't like car rides. They said he should have had therapies when he was little and they didn't really know how to help a pre- teen. He is almost 14 now and puberty and autism is horrible for my little man.

My sister is very close to my kids and knows as much about our daily life as she can without living it. She had never actually been there when he had a bad meltdown until one day at her house. When it was over and we had gone home, she called me crying and said she knew about the meltdowns but you just couldn't imagine it until you actually saw one. She cried for him and for us. Since then she has seen more and sees when it's over that he is soaked from sweat and usually falls asleep. The week before during and after a full moon are horrible. Trust me, it totally affects him.

Honestly, I couldn't have gotten through any of this without sites like this. I live in the country and the small town where the school is, doesn't have a child on the spectrum that they admit to. Trust me, everyone knows everyone's business. When I read what other families were going through that mimicked mine, I wanted to yell, Hallelujah!! I cannot put into words how much y'all have helped me. I thank you from the bottom of my heart. Knowing what I know now would have helped my son and my family so much if we had known that autism had a spectrum! It is imperative to spread autism awareness. I don't know if this is what you wanted but it was therapeutic to write lol. I could write so much more but figured this was long enough.

Please pray for us as we go through our journey. His therapy now consists of things y'all try and write about and things my niece sends me about her son's therapies. Same age but they live in Springfield ,Illinois and have awesome therapists. I will stop writing now lol. (((Hugs))) and Prayers.


**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 on the GJOP page.