Monday, July 11, 2016

Somewhere on the Spectrum. Written by Ilene

Somewhere on the Spectrum

Hello.  My name is Ilene, and I’m a house elf.  (chorus “Hello, Ilene!”).

Why do I call myself that?  Well, I’m “Mom” to 3 amazing children (ages 11, 9.5 and 9.5).  I do the things around the house that are generally considered invisible……laundry, preparing lunches, cooking and cleaning (not my strong suit), chauffeuring from activity to activity…..the thankless things that all Moms everywhere do and complain that no one recognizes their efforts.  So, what makes me different from the millions of others?

I’m a “MoM” (Mother of Multiples) and the twins are both on the Autism.  They are a girl and a boy and they are now nearly nine-and-a-half years old (don’t you DARE call them nine year olds!).  All right, that narrows my list of Moms a bit from all of us who do those activities I mention above.  So, I guess I’m not much different from anyone else.

Even though I can legally leave them at home now for brief periods of time (which I’ve had no qualms about doing with their older brother), I need to be sure the twins are supervised 100% of the time.  My son has an on again / off again history of wandering off.  My daughter cannot handle any infractions to any rules in her presence.  So, when they aren’t in school or when their Dad isn’t home and errands need to be run, I take them with me.  I am careful not to choose a building with an elevator if I can avoid it, and if I can’t, making sure we stay as far away from one whenever we leave the house.  

When they were little, this was easy.  I had a system in the grocery store…..the twins would be in the stroller, Big Brother in the cart and I would push the stroller and pull the cart.  We would stop by the bakery towards the end of our visit and, if they behaved, they would earn a cookie.  We never had any mean looks, even if one of the kids wasn’t behaving in an ideal fashion.  In fact, several other MoMs would come up to me and tell me “Whatever you are going through, this passes so keep smiling and enjoy the moments”.  I would get home and Big Brother would climb out of the car while I opened the front door to the house and put the purchases inside the house, then I’d come back to the car and lift Twin 1 in my right and Twin 2 in my left and we’d walk in the house together.  Over time, I would put the purchases away and that was just our life.  Then Autism happened.

While the Autism diagnosis made me understand so many of my children’s “quirks”, it introduced so many more questions.  And here we sit, about seven years later, living what is “our life”.  To us, it’s normal.  Someone is always around to keep an eye on the twins….they are never unsupervised (kept within hearing distance, even if they are out of sight for a brief period).  Bathroom doors remain open and the thought of privacy or personal space really doesn’t exist in our world.  We still watch preschool programs on television and pretty much keep to ourselves.

But back to the house elf analogy……

Whenever I go out in public with the twins now (and I find myself keeping that as infrequently as possible as they grow older) to do the Mom mundane daily tasks, I feel like I have to explain them to everyone we meet.  Sometimes I do this by simply wearing a shirt that somehow indicates that I’m an Autism Mom (either by saying that overtly or just by showing the Autism ribbon).  Sometimes I keep my son in a Caroline Cart at the grocery store to keep him easier to manage.  But I always feel like I need to explain their behavior to others….to make them see that I’m NOT a bad parent despite my children’s behavior (that they cannot control).  Don’t misunderstand me…..I am VERY proud of my children (all 3 of them)!  They are my entire world and there isn’t anything that I wouldn’t do for them.

But when I go home, I feel I need to punish myself for trying to explain away their behavior and potential misdeeds.  Unlike Dobby (Harry Potter reference for those of you who are unfamiliar), I don’t hit myself over the head with a frying pan or iron my hands, but I do admonish myself for not displaying the pride I feel in them.  I chide myself in worrying about what other people think instead of making sure that they get the most out of the experience of being a part of this world.  Maybe I’m trying to protect them rather than hiding them.  At least that’s what I tell myself.  But I know that’s not 100% true.

Too often, social media goes wild over incidents where people blame the parents.  And it puts fears into those of us who do everything in our power to do everything right.  We see the way that strangers look at us when our children have a meltdown.  When they are 2 years old, they don’t care…..they either ignore completely and some even try to help.  But when it’s a 9 or 10 year old, they give you a holier-than-thou look that clearly states “Why can’t you control your children?”.  It makes parents scared to leave their homes.  I’ve heard it said that being a special needs parent is like living with PTSD (Post Traumatic Stress Disorder).  And that’s definitely the truth!  

This is what needs to stop.  Any special needs family knows in their hearts that it’s not a question of “IF” their children will be bullied, but “WHEN”.  I and families like mine deserve to live our lives…..running errands, going to school, spending time at the park or at the pool…..without fear of what others think of them.  I shouldn’t feel like I need to hide in my house from the world in order to keep my kids (and my ego) safe.

And I’m one of the lucky ones.  My children are considered high functioning.  The school my children attend has a program that is well integrated in the school with the added benefit of knowing that the entire school is exposed to what a child who carries various diagnoses are like, and they learn this from kindergarten.  They are encouraged to befriend and help each other… be respectful of all of their classmates.

The time has come to stop making parents of special needs children feel like house elves.

Ilene and Family

My name is Ilene and I’m “All Things Mom”.  I blog infrequently at A Day In The Life Of The Crazies and love all things Harry Potter!

**If you want to share your story, please email me at  As always, join us daily at the GJOP FB page.  

Thursday, July 7, 2016

Keep Moving Forward

Yesterday was a big deal in our was his last day of speech!

It all started about a month ago while we were sitting in the waiting room. He looked around and said, "Mom, no more speech for me." I asked why and absolutely loved the response. He told me he was to old to go to speech. With that, I looked around and saw what he saw. He was the oldest one in the waiting room. His request made sense to me.

Later that night I spoke with my hubby and we decided to respect his request. He has been getting private speech since he was 3 years, 1 month old.....he is 12 1/2 now. I say that is a good run! We told him to keep going until the end of summer but when we spoke with his speech therapist, she told us she just put in her notice and was moving, our decision was to end speech when she left. 

The tradition at Good Shepherd is when your child is discharged they may put their handprint on the wall. He made the color with Miss Elaina and then they came out to get me. Believe me, this was emotional. I scanned the wall and was reminded of some of the children who we knew that had graduated speech/OT. I have met so many families over the years sitting in that waiting room! My daughter was only 1 when he started so she has had many mini playdates while we would wait. 

The color was painted onto his hand and placed on the wall. As he reached up I had a flashback to this little guy who was barely 3, non-verbal, elopment issues and had behavioral problems like crazy and here he was, reaching as high as he could to leave his lasting mark on Good Shepherd. 

After his handprint was on the wall, Miss Elaina asked what they should do next and he said, "take a picture." Here they are posing. 

I'm not going to felt great walking out of there. Week after week, month after month, year after year of going to outpatient speech has paid off. My advice for new parents? Be consistent with traditional therapies. Do your best with not taking months or years off. Don't get me wrong, try new things but in addition to traditional therapies. Keep moving forward with fond memories of the past.

Tuesday, June 7, 2016

"I have some good news and some bad news."

"I have some good news and some bad news." With this, my gut knew what it was instantly. His drum instructor was leaving. Of course the feeling of dread fell upon me immediately. AND my first thought was that he was going to never play drums again. That was my first reaction. My momma bear 'don't want to do anything to rock the boat' reaction.

Having been around the block with BSC and TSS services along with speech and OT therapists since he was 2ish, we were completely familiar with transition. It seems whenever you get 'settled' with someone....BAM. And the funny thing was the conversation ALWAYS started with, "I have some good news and some bad news."

He first showed interest in drums back in July of 2014. By that time it was too late to sign him up at school because there weren't any more lesson times available for drums. He was insistent so I asked his music teacher if she could recommend a place to take him. After several phone calls, we were on our way to meet his new instructor, if he was open with working with my son. He had never worked with an autistic student before so we had to see if it would work. You know, the gut thing again.

Needless to say, Ian sure had a way with reaching my son. Lessons were going wonderfully so my friend sent him his very own snare drum. Boy he loves that drum!!! In fact, on his birthday we bought him his very own set. Our home has gotten VERY LOUD! lol.

His instructor asked me how he should handle telling him the news. That's what we really loved about Ian, if he had any concerns about our son, he asked us for advice. Respect for my son. That is hard to find nowadays. Last night we drove to his last session with Ian. His new instructor was going to observe to see what has been working for the past year and a half. We are hoping this helps with the transition.

After his lesson was over, my boy happily smiled for the camera and held his new drum sticks that Ian gave to him. On the way home, he said, "I will play drums with Don now."  Yes. With Don now.

Ian has been a tremendous support with nurturing his love of music.

Friday, May 20, 2016

Somewhere on the Spectrum. Written by Mary

Somewhere on the Spectrum

Lee was born in the winter of 2012, just 17 months after his big brother. Life was crazy, to say the least, with a toddler and a newborn. 

Lee's big brother was a late talker. He received speech therapy for just a few short months through early intervention, and once he finally started talking at 18 months, he never stopped. So when Lee turned 1 and also didn't have any words, I figured he would be just like his big brother. I didn't stress about it, but I did call Early Intervention and start the process for speech therapy. I already knew the routine and was happy to welcome back our speech therapist. 

That summer, we noticed that he was drinking excessive amount of water. We always had sippy cups of water within reach for both boys, but I was refilling Lee's cup much more frequently than his brother's cup. I brought it up with his pediatrician, and some initial testing showed that he likely had Diabetes Insipidus, a condition marked by excessive water consumption. We were referred to an endocrinologist who agreed with the initial diagnosis and began additional testing (blood work and an MRI) to confirm it. 

During this same crazy summer, Lee had his 18 month check up. At that appointment, he failed the M-CHAT autism screening. He still wasn't talking or communicating with us in any way. He didn't point. However, as a stay at home mom, I was able to anticipate all his wants and needs and keep him happy, so my husband and I hadn't been worried. Plus, we still figured he was just like his older brother and would start talking when he was ready. However, the pediatrician suggested we make an appointment with a developmental pediatrician, so we began the process with CHOP.

While we were waiting for his appointment at CHOP, we got the final results of his testing for Diabetes Insipidus. Negative. His endocrinologist was not sure what was causing his excessive thirst, and suggested maybe he was hungry. And that's when it hit me. My poor baby was drinking so much because he was hungry, and he couldn't communicate that he needed food. He drank water to combat his hunger. It broke my heart. I had unnecessarily subjected him to all that testing.That's the day I knew in my heart that he had autism.

At that time, I had some well-meaning friends and family tell me there was nothing wrong with him. He was still just a baby. He didn't need an appointment with a developmental pediatrician. And that was hard, because I was in the process of trying to accept his delays and help Lee however we could. I tried to describe it by explaining that other children will point if they see a cookie. They might grunt or groan if they don't have the words, but somehow, some way, they will convey they want that cookie. But throughout Lee's entire life, he has never attempted to communicate anything at all. There were other signs of autism, too. He didn't make eye contact. He was stimming and toe walking. He would line up his vehicles and just stare at the wheels. 

On January 2, 2014, just one month before his second birthday, Lee was officially diagnosed with autism spectrum disorder. We were devastated, but not entirely surprised. 
On the ride home from his appointment, I called his case manager at Early Intervention, which he already had due to his speech therapy. She met me at my house that very day to sign the papers necessary for additional therapy. I can't say enough about how supportive they were of us during that difficult time. Within a month, we had increased speech, started occupational therapy with focus on Floor Time, and he began working with a Special Instructor twice a week using Verbal Behavior therapy. We also started Wraparound Services and used our TSS hours to continue the Verbal Behavior therapy program.

Very slowly, we started to see progress. Within a few months, he started communicating using a picture board, and we were thrilled! Then, the words started coming, and by that summer, entire phrases! I used to take notes on what he said to share with his therapists. The days he said "more cracker please mommy" and "I see doggy" left me in tears. Lee was starting to leave his world and come into ours.

By that fall, he had made so much progress that I thought he was ready for a 2-year-old playgroup at a local preschool twice a week with typical peers. However, it was hard for him. He couldn't sit during circle time or focus on a task. And he certainly didn't interact with his peers. He had a TSS with him at all times, but if for some reason she  couldn't make it, he wasn't allowed to attend. That was hard, because it just reinforced that our son was "different." But, as the year went on, his progress continued. 

This past fall, he started at a new typical preschool, 3 mornings a week without a TSS. His new teachers assured me that he would be okay without one, and I was thrilled that they were going to give him a chance. And they were right. He has been thriving at this school. His progress is incredible. He is communicating appropriately for his age. All of his stims are gone. He is interacting more with his peers, and even making friends. Last week, a BCBA from the IU went out to observe him at the school, and she told me afterwards that he was indistinguishable from his peers. She suggested that we may need to remove his diagnosis, and CHOP has hinted that they are considering this as well. We continue to be blown away by how much progress our little guy has made.

My advice to other parents is to embrace Early Intervention. This program changed my son's life. He started therapy at an extremely young age, and the results have been absolutely incredible. It's scary to think where Lee would be right now if he didn't have Early Intervention therapy.

I've known parents that have looked the other way when they saw a delay in their child. I also had someone tell me once that they didn't want their child to be "that kid" who needed therapy. Really? To me, that's selfish. When you don't get help for your child, you're only hurting them. It's not about you or your feelings, it's about doing everything you can to help them. And with Early Intervention, your child will receive free therapy from an entire team of amazing people that are on your side. They'll do everything they can to help your child succeed. Embrace that help. Your child is worth it.

Lee holding hands with his Big Brother.

**If you want to share your story, please email me at  As always, join us daily at the GJOP FB page.  

Friday, May 6, 2016

Somewhere on the Spectrum. Written by Patty Peterson

My name is Patty and my daughter, Irina, is “Somewhere on the Spectrum.”
Our story starts a little differently, as Irina was adopted at 2.5 years old.  We never saw any typical milestones.  She had been in a Romanian orphanage since birth.  She was nineteen pounds when we brought her home.  She couldn't walk or talk.  She couldn't eat solid food.  She wasn't potty trained.  She spent much of her time rocking, grinding her teeth and crying. As time went by and her improvement was slow, we realized that love, nutrition and attention were not going to be all that she needed.  It was then that we got the diagnosis of PDD-NOS.  We were upset, but not surprised.

Then came multiple therapies.  In the late 90's, there wasn't as much awareness as there is now.  Insurance coverage was even more sparse than in this day.  Imagine my surprise when I was informed that my insurance would not cover speech therapy for her!  They would only cover it if she had her speech and lost it due to injury or stroke! Next came a sea of paperwork and appointments to get medical assistance in order to get therapies for her! Medical assistance was a complicated process- continues to be- but it was a life saver!  There were therapies everyday in those days.  People coming to the house, going for speech and occupational therapy.  A behavioral specialist, a TSS, all awesome people who took a lot of abuse from Irina.  These people changed our lives and we are still friends with many of them today. I remember the days I would cry, just hoping that someday she would talk.  Now I have to ask her for just five minutes of quiet time!

Her sensory issues were overwhelming in the beginning.  The first time she felt the grass, she screamed!  She was always rocking, playing with her own fingers, opening and closing every door in the house.  She broke everything! She flushed everything down the toilet.  My husband is awesome at unclogging toilets! Thankfully, we found weighted blankets, vests, beanbag chairs.  She loved music, still does.  We sang everything to her.  When she could, she started to hum along.  We spent countless hours on the rocking chair together singing “You are my sunshine...”  Every verse, every time! Now, in her room, she has silky sheets on her bed, uses an electric blanket and plays her music so loud the floor vibrates! 

School is a challenge for her.  She has anxiety and an intellectual disability as well.  Adds to the challenges.  There was the preschool that almost kicked her out.  Grade school with adapted classes and therapists that went to school with her.  Middle school on has been a hodge- podge of different programs to try and find what works.  Irina is almost twenty now, all those school years are a blur.  Now she is in a program that is part work experience and part life skills.  It has been awesome in teaching her skills she needs for the rest of her life.  Hard to believe that we only have one more year of school, then real life begins!

We made the choice, at a young age, to try medicine as part of our regime with her.  It was a difficult but necessary choice.  She has had many medicine reactions, even becoming aggressive as a side effect.  It's not an easy choice.  Now she is stable on a plan that works for her.  She can manage them almost totally independently and is better at  remembering her meds than I am!

It's such a long, difficult, never ending road.  We try to count every blessing and celebrate every victory along the way  She is kind, she is funny.  She remembers all the details you tell her.  She has become very verbal and very social.  If you make eye contact with her, she is going to talk to you!  Last summer, while on vacation, we were waiting in a long line of women to use the bathroom.  Typical right? The woman in front of us looked at Irina and smiled.  That's all it took.  Irina introduced herself and asked where the woman was from.  Soon, all the women in the bathroom were talking about where they were vacationing from.  Even women in the stalls!  I was the crazy person choking back tears.  My daughter, the kid who used to sit under the table and rock and stare at her fingers-- my daughter just got a whole room of people talking to each other!  In many ways, she has become more social than me! 

She's come so far. In many ways it gets easier as they get older, and in many ways it gets harder.  She wants to work with people with special needs when she is finished with school.  So we will figure out a way that she can do something she enjoys.  That's what we all do for our kids, help them figure out where they "fit." Her intellectual disability complicates it, but she is capable of making a difference in this world.  She is not like Rain Man or this generation's Sheldon Cooper, but every day, even on the darkest days, ever since she was little, she is my sunshine!

Irina and Patty

**If you would like to share your story in the Somewhere on the Spectrum series, please email it to  As always, join us daily at the Grape Jelly on Pizza FB page

Friday, April 29, 2016

Somewhere on the Spectrum. Written by Single Mum of 3

Somewhere on the Spectrum

In 2004, I gave birth to a beautiful baby boy. He was the ideal baby, he barely cried, he would feed and then sleep four hours, feed then sleep four hours. I felt so blessed!

At three months old, he was hospitalized with pneumonia, he recovered well. As soon as I brought him home, he was different, he would cry constantly, he slept a total of three hours per 24 hour period. I put it down to him just getting over his illness. As the months went on the constant crying continued. If I held him, he cried more. I felt useless. 

At a year old I called my Health visitor. I begged her to come and see me and advise me. She spent an hour watching my son and asking me questions about him. She pointed out that he didn't respond to his name, didn't point, hadn't developed the pincer grip, barely smiled and spent his time just lining up his toy cars. It was my first child, I was very young and didn't know this was a problem. The Health visitor was lovely, she set up a care package, for someone to come out and give me tips on how to encourage my son to sleep better. Nothing worked.

The Health visitor referred my son to the child development centre, he was seen at 24 months old. I remember sitting in the doctor's room, with the Health visitor. My son had climbed onto the bed and was picking the paper sheet into tiny pieces. He was rocking, flapping and shouting "urgh urgh urgh" To me, this was just my son, he had always done this. I was asked hundreds of questions, my son was observed, two and a half hours later, the doctor said " your son has autism."

I remember replying " ok." I wasn't upset, or shocked, because I had never heard of autism before. I was 18 years old. The doctor didn't give me any information, apart from a leaflet. I left the building, called my mum and told her my son had autism. She told me not to worry, everything would be OK.

I was becoming confused, so later that day I called my Health visitor and asked exactly what autism was. She explained it was a lifelong social, emotional and communication disorder. She told me that my son may never talk, may have severe learning difficulties, she said he would always be in his own little world. I cried. I broke down and cried. I just imagined my perfect little boy being stuck in a two year old head for the rest of his life. I was scared. How would I cope? I was barely coping as it was on less than 3 hours sleep a night, how would I cope like this forever?

As the weeks went on, appointment letters were coming through the door, one after the other. I attended these appointments in a blur. First was speech therapy. After two sessions they discharged my son because he was too distressed at each appointment, they said to come back when he was older. He attended sensory therapy, after 3 sessions they said he was too hyperactive to take part, bring him back when he is older and might be calmer. It felt like everyone was giving up on my son. Well I wasn't about to. I managed to get him into a special needs nursery, I spent hours a day at home doing play therapy and sensory therapy and my own made up speech therapy. I vowed to myself that I would give him the best chance he deserved. 

A few years later I fell pregnant unexpectedly. I gave birth and had another "ideal" baby. My first born, had started to talk, I was so proud of him! I was that busy concentrating on trying to teach my son to talk,feed himself, and show the professionals that my son didn't need people giving up on him, he just needed extra help, that I  hadn't noticed my second born wasn't developing properly, he was 16 months old. He hadn't so much as babbled, he spent his time spinning around or rolling toys under his fingers, wasn't responding to his name. I called the Health visitor who made a referral to the CDC, at 23 months old he was also diagnosed with autism. 

This time, I knew what I was dealing with, I knew how to help my child. I wasn't upset this time, because I knew that it wasn't the end of the world, that my child would develop if given the attention and support he needed. So I set off again, this time teaching both how to talk. 

By the time my second child was 30 months old, he and my eldest child were in speech therapy. My eldest child was blossoming, my second child wasn't developing as quickly. I didn't fret though, he had plenty of time to blossom too. All that mattered was that they were both happy. And they were. My eldest was happy in a unit for children with autism, my second child I found out had severe learning difficulties as well as autism, he was given a space at a special needs school. Not long after he started I found myself unexpectedly pregnant again! ( me and birth control didn't work!) This time it was a girl. I paid close attention to her development, I was expecting her to develop like my sons, but she wasn't, she developed neuro typically. Hit all her milestones. At 15 months old, she woke up one morning and literally stopped talking/babbling, stopped eye contact, and just generally regressed. I just knew from that day she had autism. At 27 months old it was confirmed. I was scared. I was in shock, because it wasn't expected.

I was scared because now I am a single parent to three children with autism, but, do you know what? I wouldn't have it any other way. My children are my world, they make me laugh, they fill my heart with so much love it feels like it will burst! Yes, I am exhausted at times, but it's a small price to pay to see my children happy and well cared for. The people who said my eldest may not ever talk, were wrong, he is nearly 12 and has the language of a 7/8 year old. My second child is nonverbal, my youngest is saying some words. I will never give up on my beautiful, sweet children. 

**If you want to share your story, please email me at  As always, join us daily at the GJOP FB page.  

Friday, April 22, 2016

Somewhere on the Spectrum. Written by Kimberly Miller

Somewhere on the Spectrum

I think I knew there was something different about my son from the moment he was born. It seems kind of odd to say that, but thinking back it’s true. My son was born via emergency c section after more than 30 hours of labor. My blood pressure was dropping and his heart rate was, so there was no more time to wait. When he was born I heard the tiniest little sound that sounded like a kitten mewing. It’s funny because I wasn’t sure at first if that was him or not, but it was. He was a quiet baby in the beginning. All snuggly. I remember I had him under the covers with me and the nurse came and jumped when she moved the blankets to take my blood pressure. He wasn’t making a sound. He was happy to be snuggled up with me. I remember the nurses telling me I was going to to spoil him or he was going to get his days and nights confused because I just let him sleep all the time and because I held him all the time.  When we got home he slept a lot, as newborns do. When he was awake he wanted to be held. I didn’t mind at all. Now that I know what I know, I should have savored those sleepy days a bit more. 

When he was 3 months old, we volunteered to babysit for my in laws, they were caring for a granddaughter whose mother had died as well as my mother in law’s brother with Down Syndrome. They didn’t get any alone time at all, ever. So my husband, both boys and I hung out at their house so they could go to some church event. We were driving back home in the middle of the night. The baby was snoozing away on the trip home. There was an accident on the freeway in front of us, so my husband stopped to check on the people and see if the police were needed. Though we were not involved in anyway and there had been no noise that was loud enough to startle him, the baby started crying. It was like someone had flipped a switch. I am sure it had nothing to do with the events of the day, but this is the way that it happened. From that day on my son slept very little. He cried when he was put down and he could stay awake until the wee hours. He would fight sleep at all costs. Sometimes I would get him to sleep and he wouldn’t be asleep for an hour before he would be screaming bloody murder, like he was in pain or scared. He was less than 6 months old. I asked the doctor about it. She said he was too young for night terrors and not to worry about it, he would outgrow it by two. 

He was walking by 9 months though he had just barely learned to sit up on his own (I remember he was older than 6 months because my other son sat unassisted for the first time at 6 months and my younger son did not, it was more like 7 months) and was barely crawling (around 5-6 months). It was like he had no time for crawling he needed to get moving already. My older son had pulled up on furniture and would walk as long as he had something to hold on to, but didn’t actually take his first steps alone until shortly after his first birthday. I was surprised when my baby took off before his first birthday. He did the babbling thing and everything seemed on track in that department. 

We visited my husband’s family often and they were always feeding him table food. I remember his grandparents giving him clam chowder at 4 months of age.  I was furious, but felt compelled to keep it to myself. They meant well after all. He never was one for meats, even baby food meat he refused. He would gnaw on a chicken leg, but always the bone end, so maybe it was more about teething than hunger. I remember he always put food in his drink and I remember my husband would fuss at him about it. I would tell him just let him do it. It’s his drink. He had to drink from an open cup. He didn’t like sippy cups and was always taking the lids off of them. 

The next obstacle was keeping him in or out of rooms. He was either trying to get out the front door or locking himself in a room. We got those bulb things you put on the doorknobs but he figured out how to bypass those in less than 3 days at 18 months old. The stove lock was a no go either. Though each was good for keeping the adults at bay, the kiddo could figure them out lickety split. It was about this time that I began to consider more seriously that he was different.  

He still didn’t sleep much but would be raring to go after just a few hours to recharge. I, on the other hand was exhausted. I couldn’t sit down for a minute because he was always into something. Still the doctor waved away my concerns. I remember around 3 I had snuck in the shower really fast when I thought he was sleeping. I got out and tried to go to my room to get dressed but it was locked. I was knocking and calling his name trying to get him to open the door, finally it dawned on me to check the front door. We had 5 locks on the front door by this time and he had managed to get them all open and was gone. I kicked in the bedroom door, got dressed and ran through the apartment complex screaming his name. By the time I got to the front (it was a small complex too!) he was coming back from down the street on his bike. I chunked his bike and drug him back to the apartment screaming and crying. I was at my wits end and I had no one to turn to other than his doctor who kept blowing me off. 

My husband and I had split up by this time and my older son was staying with my parents until I could get my life together. When he was 4, I was in the bedroom and I heard a crash from the kitchen. I went to inspect and my son was pinned between the sink and the stove he had somehow managed to pull over onto himself. I threw the stove off him. He wasn’t even hurt. He suffered no more than a small red mark on his back. He still talked in 2 and 3 word sentences at this age and often you couldn’t understand what he was saying. We would joke that he was speaking a foreign language. We started potty training around 2 or 21/2. He wasn’t fully potty trained until 6, just before school started.

On the first day of school, I  mentioned to the teacher, that I thought something was different about him, but she too blew me off. “He’s just a boy!” I cannot tell you how I hate this sentence. The notes from the teacher started coming home immediately and by the end of the school year the teacher had changed her tune. I think you were right was her new reply. I had gotten a new pediatrician. He was originally diagnosed with ADHD. The meds didn’t really seem to help. Finally she referred me. I started taking him to a place that offered psychiatric services and counseling. We went through so many meds trying to find what would work for him. They would help for a week or so then nothing. At the same time we were doing one on one therapy as well. The therapist recommended him for autism testing.

It’s funny how things work out. I had wanted to get him tested but the insurance wouldn’t cover it and paying for it  myself was not even an option. It would have taken me years to pay for it. The next time we went for therapy I think told the therapist that I had lost my job. She was like that’s great, now you can get him tested. Since I was unemployed he qualified for medicaid and that would pay for the testing. So there was the silver lining.

My son got his Autism diagnosis (Aspergers) in the summer of 2011 just before his 8th birthday. When I told his father his reply was,”Well are you happy now? You wanted something to be wrong with him!” My twin sister who also has a son on the spectrum (he is 7 months older) told me I was sick and should be ashamed of myself. There was nothing wrong with my son and I needed to see a doctor not him. Her reasoning? My son could ride a bike. “He’s too nimble to be autistic.” I was in this all alone, but that’s ok, because I felt alone my entire life.  

As I was filling out all of the forms for the testing facility and then again for the school who was still dragging their feet about testing him, I could see myself in each of those answers. I think I cried. The more I read the more I cried because it was like I was finally finding myself in finding answers for my son. Life had always been so hard for me. I couldn’t understand why. My whole life was chaotic and, now that I know better, the last place someone on the spectrum needed to be. I hid in my room and watched tv all the time. I was totally obsessed. I freaked out if I missed an episode. I remember that was the punishment my mom used. She took away the tv from me. My grandmother gave me a radio that played tv shows also. So when my mom would take away the tv I would lock myself in my room and listen to the show on the radio. When I went to camp for a week in 5th grade, I thought I was going to die without my shows for a whole week. 

On an everyday basis I counted everything and worried about everything. When I saw a book left on the bleachers, I would create an entire scenario in my head of what would happen to the student including what his excuse would be and what his teacher would say. I chewed the inside of my cheeks and my lips always had the imprint of my teeth on the inside of them. When I went to the grocery store I couldn’t step on the colored squares on the tile or the lines. At night I couldn’t go to sleep so I always made up stories in  my head. Every night I would pick up where I left off until I got bored or came up with something new to think about. 

To say I was clumsy is an understatement, my parents sometimes called me Grace. I would get so excited about Christmas I would shake all over even when I was 10. I would beg to go to my grandmother’s and cry the entire way there because I wanted to go back home. I was such a mess. 

I can’t remember having any friends until 6th grade. I knew kids in elementary school, but no one was really my friend. There were girls I liked, but mostly I didn’t fit in with them. I remember in 5th grade, as a reward, our 5th grade teacher let all of the girls with perfect attendance spend the night with her. There were no more than 5 us. The other girls were popular girls I cannot even remember them really talking to me. I remember we ate pizza and watched Excalibur. I had no idea who the people were in the movie and it was actually a bit scary for me. 

I had a voracious appetite for books though and carried one around with me every day. At 13 I began reading grown up books. I don’t mean like x rated or anything, but grown up topics. The stories were about fictional police officers, but still not appropriate for 13 year olds. Especially immature 13 year olds. I can say though that I did have two friends that I hung out with often from about 7th or 8th grade on. With all of the reading I have done and still do, I see why Aspergers is so easily missed in girls. We can definitely hide it better. It’s not as unusual for girls to be shy or read a lot and not be part of a group. Inside though things were a lot different. I didn’t fit in. I didn’t wear make up and do my hair. I wasn’t into clothes or shoes or trends. I wore a t-shirt and jeans all the time. By middle school, when I was finally allowed to grow it out, my hair was always in a pony tail. My friends and even my sisters always wanted to do make overs, but I could never get into all of that. I even carried a wallet because I couldn’t keep up with a purse and really saw no point in carrying one when I had nothing to put in it. I was picked on everyday of my life from the time I started school. I still get picked on now, but it’s mostly well intentioned people that aren’t specifically trying to be mean. 

When my husband left I started going to therapy because I just couldn’t get over it. I cried all of the time and I even ended up in the ER because I took too many pills. I wasn’t intentionally trying to kill myself, but I was trying to stop the pain and trying to sleep. I took Tylenol and Benadryl. The doctor said she did not think I was suicidal, but she did think I should talk to someone. Therapy helped to some degree. I was able to talk about a variety of things so that helped. She also helped me understand myself a bit more. She recommended a book called The Highly Sensitive Person. It explained a lot and that felt good. I felt less weird.

I have tried my best to give my children more than I had. I don’t mean material possessions. I mean more of my time more of my love and more understanding. I always felt out of place and like no one understood me. Life seemed to be so much more difficult for me. Everything hurt me so much more than others. I was always told I was too loud or too happy. I always felt criticized and like I wasn’t good enough. There were often times I would beg God to die or beg him to tell me what I did wrong and why he hated me so much. More than anything else I wanted my children not to experience the same. 

When I got my younger son’s diagnosis I was glad to finally have some answers, but I also felt a tremendous amount of guilt because I had already been through everything he was going through, so I passed this on to him. Had I known, I am not sure that I would have had kids. Life has been brutal for me and the thought that my child is going through the same hurts me deeply. For the most part is a happy kid, but school is hellacious. Kids are not nice a lot of time. I am hoping that when he is done with school and not having to deal with all of that he will be a lot happier. He is not as emotional as I am. I do comfort myself with the fact that he has someone that understands him and speaks up for him. Someone who fights for him. I didn’t have that. So if nothing else, at least I am more equipped I guess than some others are.

Kimberly with her son. 

**If you want to share your story, please email me at  As always, join us daily at the GJOP FB page.  

Friday, April 15, 2016

Somewhere on the Spectrum. Written by Kelly Kemp

Somewhere on the Spectrum
The First Day of the Rest of Our Lives
Hi. My name is Kelly. I am married to Dave and have two kids: H, who is 7,and Tink (not her real name, obviously, although in this day and age, who can tell?!) who just turned 3. Periodically, there’s also J, who is 17 and getting a life, so, sadly, we don’t see as much of him these days. Right, that’s the background done…
Yesterday our whole world was turned upside down.
Our beautiful, funny, loopy, clever, stroppy, clumsy, amazing daughter was diagnosed with autism. Autism Spectrum Disorder. She’s ‘on the spectrum ‘. Whichever way you put it, that’s it. A game-changer. For life.
Now, obviously, this wasn’t totally unexpected. Around 18 months ago we asked for a referral to speech therapy services as we were concerned at her lack of speech, and at the eventual appointment other ‘issues’ were raised that hadn’t even come onto our radar. When we received the report and ‘The’ A’ Word’ was mentioned, alarm bells started ringing! “No! She couldn’t possibly be! It’s just her speech, surely?” She was referred to a paediatrician…
When that appointment came round (these things do take time; you hear about it, but they really do), we spent half an hour in a tiny, unfamiliar room with a strange and rather cold person attempting to make our 2 year old play with baby toys, which, of course, she didn’t want to do. “Does she do things repeatedly?” we were asked. “No, not usually,” I reply, as Tink sits on my lap, taking squeaky eggs out of their egg box and putting them back in… Repeatedly.
That report came back in agreement with the speech therapist’s assessment that Tink did show some traits that may indicate autistic tendencies. Sigh.
So, this then led to another long wait for developmental assessment at our nearest Child Development Centre. This took place this spring and involved two mornings of assessment.
By now, I had removed my fingers from my ears, stopped ‘la la la-ing’ and had made tentative steps into reading up more on ASD. Also, as part of my work as a Preschool Manager, I had attended a level one autism awareness course, during which I sat blubbering as the realisation dawned that my daughter – my own daughter – just may be one of the children we were learning about. Rather embarrassing when sat amongst other childcare professionals on a course.
The assessments didn’t go too well – Tink was rather uncooperative, but I guess that was most likely just a trait of what we now know is her condition. They went to see her at her Preschool too, as they wanted to see how she interacts with other children and how she responds to requests from other adults, seeing as they didn’t get this information on the assessment days!
So this brought us (after another month of waiting) to yesterday. D-day. The day we find out if our precious little Tink is ‘just a bit behind’ and it’s something she’ll grow out of, or if it’s a lifelong condition we’ll have to get to know very well. After reading through the assessment report, it still wasn’t clear as to what the diagnosis was – we assumed they would tell us this in person, but we could take a wild guess. We waited nervously, Tink playing happily in the background with a nursery nurse from the centre, until, eventually, two official-looking people entered the room. Deep breath…
The paediatrician was very sensitive to our feelings and broke the news quite gently. After explaining the findings in the report, she stated, rather tentatively, that she was diagnosing Tink with Autism Spectrum Disorder. She looked a little surprised that we didn’t look surprised. In fact, although it’s a huge piece of news, it was a relief to finally know. For sure. To have ‘the diagnosis’ that we can use to get Tink some help and support throughout her life to make it better. Great, even. Of course, we know that this may not always be easy. People make the right noises about ‘early intervention’, but in reality, there is little funding available much of the time and it can be incredibly hard to access. But we have ‘the diagnosis’, so it’s a start.  
The paediatrician made a pretty sharp exit, leaving us with the teacher we had seen during the assessments. She was not quite so sensitive, and proceeded to bombard us with information, leaflets, talk of education health care plans and so on. We literally have a pile of booklets, leaflets and website addresses to work through. We were waved on our merry way with a “ring if you need us!” – and off we went. Out into the big, wide world with our beautiful, autistic daughter and a whole new world ahead of us. The first day of the rest of our lives… and it’s looking pretty scary right now. Wish us luck!

Join Kelly and Tink's adventures daily on her FB page It's a Tink Thing
 and her blog with the same name. 

Friday, April 8, 2016

Somewhere on the Spectrum. Written by Kerri

Somewhere on the Spectrum

My Journey…………

I had wanted to be a mother all of my life.  At age 41 after 6 miscarriages and exhausting all my medical insurance for fertility; I turned to legal risk adoption.  This basically means that you foster a child with the hope that parental rights will be terminated. I took classes; got approved and then the wait began.  I got several calls for babies that had shaken baby syndrome.  I would be a single parent so my biggest concern was for healthy child-nothing else.  I worried that I wouldn’t be able to handle the care those babies would need; so I declined.

The wait continued until I was 42 ½ years old.  One day I received a call that there was a baby boy for me.  My first question was if he was healthy.  He was.  His biological mother had killed his purported father while holding her then son.  The baby was then held hostage for six hours in an abandoned warehouse until the mother surrendered.  When you get these calls; you don’t have long to decide as the child needs a place to go. I was ecstatic at the chance and accepted. 

He was and is beautiful!  It was a long journey through the court process and also to try to determine his paternity.  As it turned out, the victim was not his biological father and the mother was not willing to provide alternatives.  This made it even more difficult to terminate parental rights.  When all was said and done; it was two years later and the adoption was finally completed.  I was his mom!

During the first two years of his life, while waiting for the adoption to be realized; I noticed some things.  I was sure the early trauma would affect him in some way.  I’m a social worker, after all, so that’s how I think.  He walked around fourteen months; but talking wasn’t happening.  Everyone told me that boys are late talkers.  It just didn’t feel right.  Call it mother’s intuition.  I had him evaluated for speech and OT and he qualified with more than a 25% delay.  He also bit kids a lot in daycare and had some pretty awesome tantrums.  Again, I had him evaluated. The day before the adoption hearing a diagnosis came in the mail:  PDD-NOS.

Some people actually have asked me why I still adopted him.  As if you would “give back” a child-your child that you have bonded with and love.  He is very verbal now and was by 24 months with the speech therapy.  As he grows we have new and different challenges.  Just as every child does at every stage in life.

I believe there are several things that can be gleaned from my story.  First, early intervention is everything!  If it wasn’t for EI; I don’t know at what level he would be functioning now.  It is a free service that is government mandated.  If you suspect something is delayed in your child’s development; please avail yourself of their services.  There is so much to gain and nothing to lose.

Second, autism can happen to anybody-whether you adopt or give birth. .  In my son’s case; there was no prenatal care-at all.  I think this may give some credence to the folic acid connection.  My son is still a healthy child; but he is different. Different is ok.  We have to adjust to it; both of us. He isn’t damaged, disposable or something to return.  He has certain strengths that are a part of his diagnosis.  He is also more than his diagnosis. He is a smart, charming, funny and affectionate person.

Friday, April 1, 2016

Somewhere on the Spectrum. Written by Susan Eyrich

Somewhere on the Spectrum

April is Autism Awareness Month. The month when we wear blue and attach puzzle pieces to everything we see. We will post statistics and demand acceptance. Autism awareness and acceptance is every day for us. It is a beautiful life to live.

I'm an Autistic adult. I've had a rough life but the beauty of my life has surpassed all the rough times. I wouldn't trade my life on the spectrum and I wouldn't trade the lives of my children. When I see people speak of a cure, I feel that my life and the lives of others are devalued. We are mothers, fathers, sisters, brothers, aunts and uncles. We are worthy of more than a political debate.

I'm a mother to 6 children. Each of my 6 children have taught me how to not just survive in this world but to truly live. My oldest son is almost 17 and is Autistic. There are many words to describe him but proud would be the word I choose. He is proud of having Autism. He finds strength in a diagnosis that most view as a weakness. My oldest daughter is 14 and she has Bipolar Disorder. I would describe her as protective. She protects her brothers and sister with a fierceness unknown to most. My next son is 10 and is Autistic. He is the most curious child you will ever meet and his empathy is amazing. He knows how I feel before I do. My next son is 8 and is Autistic. He is love redefined. He will embrace everyone he meets. My youngest daughter is 8 and Autistic. She is fierce and stubborn. She is a miniature me. My youngest son is 1. He's an adorable baby.

Some in the Autism community will ask why we chose to have children when we are genetically predisposed to Autism. The answer is pretty simple. All lives matter and every life is beautiful. My life, your life and your children's lives are worthy of love and acceptance.

In April I hope you spread awareness and acceptance. 

I hope you find connections in our large community. Most of all, I hope you see how beautiful Autistic lives are and you embrace them with open arms. Then I hope you take these things and spread them all year long. Teach your local communities that a community isn't a community when they exclude even one person.

We are worthy. We are beautiful. We are successful. We are determined. We are loving. We aren't inferior. We aren't diseased. We walk among you. We are Autistic. 

Susan's Family. 

Read more about Susan's family and her thoughts over on her Facebook page titled
  In Our World, We Are The Voice.  

*If you want to share your story, please email  As always, join us daily at our Grape Jelly on Pizza Facebook page.

Wednesday, March 30, 2016

Our 'Toy Story 3' Moment

My boy.  My son.  So empathetic and generous.  As a parent you try and do the right thing.  Show them how to help people and give when you can. Give time, give items, give food, give funds.

His 3rd birthday party.  All dinosaurs.
A couple of months ago, he pulled out his dinosaur collection.  This has been an ongoing collection since he was 3.  There were all different sizes and colors.  Man-eating and veggie eating 'dinobours'. That was how he used to say dinosaurs.....'dinoboars'.  I can still hear his little voice screaming DINOBAURS....ROAR!!!! Anyway, he took them up in his room and played with them again for a few days then packed them up, brought them to me and said he wanted to give them away.  "All done dinosaurs. I'm too big now." My heart actually started aching.

They were always with him.
I asked if he was really ready to give them away and never see them again.  He told me, yes.  I tucked the bin away in a closet for a while in case he would change his mind...he didn't.  He even went searching around the house for them and eventually found them.

"Mom.  I'm too big for dinosaurs.  Let's give them to ARCH."

ARCH of Lehigh Valley is our home away from home.  This organization has helped our family and him so much there are no words to express our gratitude.  Over the past 7 years, we have donated all the toys and sensory items he no longer wants.  It only seemed appropriate for them to get his precious dinosaur collection.

One last time then into
 the bin they went.
He played with them one last time today.  Then packed them up, put them in the trunk and off we went.  He ran into ARCH of Lehigh Valley for his after school program and didn't even look back....but I did.  Reminded me of the last scene of Toy Story 3 when Andy drives away and the toys watch him leave. I always cry during that part.

What a sap I am!!!  Pathetic.  There were so many memories, good and bad, attached to those dinosaurs.  Silly, right? When he first started collecting them he was in a bad place.  A really bad place.  There wasn't even an official diagnosis of Autism yet. There was no sleep, no talking, diapers, tantrums, meltdowns, screaming, throwing, climbing, eloping, oh, it wasn't a good time at all.  Fast forward to this day, he is vocal, sleeps the majority of the time, tantrums are few and far between, meltdowns are non-existent, no more screaming.  The progress has been incredible.  If you would've told me, when he was 3 he was going to be like he is now at 12, I wouldn't have believed you at all.

Anyway, back to the point.  He has matured over the past 9 years and is moving on. What will the next 9 years hold?  Only the future will tell.  But, there won't be any more 'dinobaur's in our house, just memories and an occasional roar!

Friday, March 25, 2016

Somewhere on the Spectrum. Written by Andrea Penamora

Somewhere on the Spectrum

I was asked to think about sharing our story. Well, here it goes. Our first son was born December 2012. He had some medical issues from the beginning. He swallowed meconium at birth and had to spend a couple days in the NICU. We spent a total of 3 nights and 4 days at the hospital. We were finally discharged and we could take our bundle of joy home. This is when his gastrointestinal issues started. Our (hippy) doctor kept telling us it was colic, but I knew that it was not. Our baby would scream bloody murder when he was trying to go number 2. There was something going on. Come to find out he was suffering from chronic constipation, which he still does to this day. He also suffered from Acid Reflux as a baby and we had to put him on a special formula and add cereal to his bottles.

Fast forward to when he was six months old. This is when I noticed some odd behavior. It wasn’t anything too crazy but it did concern me. I mentioned it to the same (hippy) doctor and she disregarded it and said it was just him learning how to use different parts of his body. I let it go and enjoyed our baby. He was a happy baby and did not cry much. The only times he really cried is if he wasn’t feeling well or when we had to go to bed. 

He was hitting milestones, for the most part. He sat up and crawled around 6-7 months. He didn’t start walking until around 14 months. We moved from Hawaii to South Texas when he was 12 months old. Things seemed to be good. He was speaking, saying the normal mama, dada, waving hi, smiling, nothing that would really make anyone concerned. As he started walking this is when things started to pick up. He was running all over the place, never wanting to sit still. We saw it as him being a typical toddler exploring and being happy. He was always smiling. As time went on he got more and more hyperactive and fidgeting while we would try to hold him. He just wanted to run around. It was April 2014 when things really started to change. 

Our son started to get monthly fevers. His fevers would range from 102-106. He would become very miserable and did not want to eat or do anything. Going from the hyperactive little boy to this sad little boy with no energy was scary. It wasn’t until October 2014 that we found out he has PFAPA (periodic fever syndrome). Between April and October he became more and more out of control. Not listening to us, running off, fighting us when we would try to hold him, throwing toys. We thought that with his fevers tearing him down so much that when he was very hyper it was because of bottled up energy. We really did not think a lot of it. We just wanted him to be well. 

As time went on things just seemed more off. We started noticing that his speech was not accelerating. In May of 2015 we had Bentley evaluated through ECI. This confirmed a speech delay and a cognitive delay, later he was evaluated for sensory issues. He started to receive therapy and then he also got accepted into Early Head Start. We did see some improvement with his speech, but not enough. We went and saw our first developmental pediatrician in July and she was useless, she asked us a couple questions and just looked at our son and basically said that he had “hyperkinesis with speech delay,” Yea I could have told her that. So that was a waste of time. We continued with therapy through ECI and bringing him to Early Head Start. 

As time went on when start noticing more and more. We did give birth to our second in April 2015. Some thought that our son may have been jealous and some of his behaviors were from that but he was always wanting to help with his baby brother and always wanted to give kisses and hugs. We got referred to a child psychologist for help with his behaviors. The behavioral psychologist diagnosed him with ADHD w/anxiety. We did not 100% agree with this diagnosis but we were willing to listen to his parenting tools as to how to help our son in certain situations. We have applied the tools and still do to this day. Sometimes it works and sometimes it does not. Because we were not 100% okay with that diagnosis we ended up asking for a second opinion to see a developmental pediatrician. We saw him in November 2015 and we had high hopes of this being it so we could move forward and get him the behavioral therapy that he needs. NOPE! This doctor basically told us it was our fault that our son is the way he is because he doesn’t have meltdowns at head start and only has them at home. And because he’s sociable and has eye contact that he could not possibly have ASD. So here we sit with no ASD diagnosis even though we strongly believe he has it and his primary care doctor agrees with us but there is only so much she can do.  

Our son does have medical issues they do play a part in some of his behaviors. He was diagnosed with Hypothyroidism in February 2015. So, he suffers from PFAPA, Hypothyroidism, ADHD w/anxiety, and SPD. OH, and the last developmental pediatrician does not believe in SPD so he told us to have the OT stop doing sensory therapy (brushing, etc.). I just laughed at him. We did not tell the OT to stop any kind of therapy that she was doing. 

We have had the Microarray genetic test done and it came back “negative.” And because he is having issues with temperature and his body regulating it correctly he is going to have an MRI of his brain done. Once we get the results from that his behavioral psychologist wants us to contact him to discuss a treatment plan for him. We have told him that our son has been showing more and more signs of ASD and we want him reevaluated. 

In the meantime our son has been accepted into a Special Education Pre-K at a local public elementary school and he continues to go to Head Start in the afternoon. We absolutely LOVE his Pre-k teacher. And our son has been learning a lot in her class. He has learned his colors and he’s learning new songs. He’s such a bright little guy and I see him accomplishing so much throughout his lifetime, we just wants what is best for him. 

So this is our story as of right now. We are still awaiting an ASD diagnosis and hope that some day soon a doctor will actually listen to our concerns and take them seriously.

Bentley and Andrea

*If you want to share your story, please email  As always, join us daily at our Grape Jelly on Pizza Facebook page.