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


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Friday, March 18, 2016

Somewhere on the Spectrum. Written by Jenna Nelson

Somewhere on the Spectrum

I’ve heard horror stories about Parents getting their Autism diagnosis for their kids, but for us it was a different story.
Looking back, I can’t tell you exactly when my kids regressed. I wasn’t looking for it. I had Tyler two days before Justin turned one, so to say I was distracted was an understatement. I tried my hardest to juggle between the two, making sure to read with them a few times a day, floor time, taking walks and talking about everything (now we’re putting on your shoes). Trying to split my time between both of them. They both progressed with the “normal” time frames for milestones.
It wasn’t until later that I could look back and see that they both regressed somewhere between a year and a year and a half. They slowly started losing language, becoming more rigid in routine and preferences in movies, food, toys and places we went… If we went to the “wrong” grocery store they would have a full blown meltdown. I had NO CLUE what was going on! They had never done things like that before. I just assumed all of this was them going through a phase. I got reassurances and advice from EVERYONE.
“Don’t worry, he’ll talk when he has something to say."
“Some kids are just like that.”
“You need to make him eat what you eat or he’s always going to be a picky eater.”
“He just needs more discipline.”

We couldn’t do anything. We couldn’t go anywhere. Justin became solitary… played and did things by himself. He was less affectionate. Lost eye contact. I’d have to make him give me kisses. It was the same with Tyler for the most part.
Tyler became more aggressive. He would (and still does) physically hurt himself, throw himself to the floor, throw his head back on whatever – concrete, tile… Honestly, I was scared he would REALLY hurt himself. I would try to calm him down. People told me to hug him really tight and he would wear himself out and stop. Nope. That just made him even angrier. Eventually I figured out to just get under him to keep him from hurting himself until he could calm down himself. I ended up getting hurt, but it was better than him getting a concussion or a broken arm. Or I would move everything that was around him so he couldn’t hit anything.
We had to “baby proof” the house again. They started destroying everything, screaming over everything… the only time they were ever really happy for an extended period of time, was when we were outside or in water. We took half an hour to an hour long walks 1-3 times a day, depending on how bad the day was.
Every night I cried myself to sleep. I just wanted to be a good Mom and a good Wife. Sure, I thought that I wanted to go to college and become a lawyer… or travel the world. But as soon as I had Justin, I realized my passion in life… I realized why I had always been so incredibly excited about working at the Pregnancy Support Center or the Daycare, why I loved hanging out with kids… I was being prepared to be a great mother! Yet, here I was. Bawling my eyes out into my pillow because I couldn’t teach my kids to talk. I couldn’t get them to color. I couldn’t get them to do anything they were supposed to. Other kids were learning letters, numbers and colors… and here I was trying to figure out ways to keep their diapers on so they wouldn’t smear their poo all over the walls.
“What’s wrong with me? Three years of working at a daycare with other peoples kids…  and I can’t even teach my own. I’m a horrible mother. My kids would be better off without me. What’s the point in me even being here… being alive?” Depressed doesn’t begin to explain how I felt.
I grew resentful towards my husband. He got to leave the house. He got to get away from the stress and frustrations I had to deal with all day, every day. I would scream and yell at him, sometimes over absolutely nothing. Sometimes over everything. We got married very young, and I’ll admit, we really didn’t understand how to have a healthy relationship, let alone a healthy marriage. How to really communicate with each other. (We’re still working on it!). We almost got a divorce a few times. I despised him for working and leaving me to deal with the kids by myself. But I hated myself more. The one thing I’m supposed to do in life, is to take care of my kids… and I can’t do it.
That was a really dark year and a half to two years for our family. I struggled every single day.
Then, when I was still trying to make my kids do normal things, we were at a friends house for dinner. The kids were playing when my friend said to me, the boys acted and had similar mannerisms as a little boy she watched during the day. He had Autism. At the time, I couldn’t remember ever hearing about the word.
That night, after I FINALLY got the boys in bed around 11, I googled Red Flags for Autism. Clicked on the first link and started reading. One after another after another….. my heart started beating faster the more I read.
My kids are Autistic. There wasn’t a doubt in my mind. I started pulling up everything and anything I could find about Autism. I’ll be honest. A lot of it confused me. There were so many acronyms and long words. Aspergers is Autism? But this Autism is like that, and that Autism is like this and… My head was spinning.
But I did know one thing for sure by the time I was done reading many hours later… it wasn’t my fault my kids weren’t like other kids. I cried for a whole other reason that night. Not because my kids weren’t ever going to be “normal” or that they may never talk… but because I WASN’T a horrible Mother. I wasn’t doing everything wrong.
A few months later we got their diagnosis of Severe/Regressive Non-verbal Autism. Dr. Richard Dowel at the Children's Development Center has an amazing and reassuring way of explaining the complexity that goes on in their brain. I felt like I truly understood why my kids were the way they were. Dr. Dowell actually told me that I was one of the few parents he had met that had done such a great job figuring out our kids without even knowing what was wrong with them… that he was impressed with me and how well I handled our situation and how I responded to the kids while we were in his office.
I had a huge smile on my face as we were leaving, as I was being drug around by two crazy kids. I made it into the truck before I started bawling. Not only wasn’t it my fault, I was actually doing exactly what my kids needed at that time. I was being a good Mother.
I was relieved.
Read more about Jenna's family on her blog, My Crazy Little People
 and also her Facebook page with the same name.  

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

Friday, March 11, 2016

Somewhere on the Spectrum. Written by Michelle Bussiere

Somewhere on the Spectrum

When I was 24 years old I gave birth to my first child.  He was a beautiful boy, whom I named “David” after his father, and his father before him.  I had been married just barely a year, and this little baby who was the spitting image of his father, seemed perfect in every wayLife was amazing, and by the time David was 8 months old, I was pregnant again!  Up until David was about 18 months old (and I had just given birth to his little sister, Madison) my husband and I were in a state of bliss about our little family we were building.  Who can really be prepared for the moment your life changes irrevocably?  The best way to bring you to that moment in time is by sharing part of a baby-book entry that I wrote to David after his 18-month checkup:

My Little Man,

This is going to be the hardest entry to write since the day you were born…
It all started with a trip to the pediatrician.  We had always taken you to the same doctor, who was great, but once you started getting sick all the time I needed a second opinion.  So, to get another perspective, we saw a new doctor for your checkup.  One of the things I asked her was if it was normal for you to only be saying “Dada” at 18-months old.  She asked me some other questions, like: Can you walk backwards, or kick a ball? Do you follow simple commands such as “bring mommy your shoes”? most of which are things you haven’t started doing yet. She then asked if you flapped your hands in the air.  At that point I realized she was thinking you were autistic.  I thought she was out of her mind!!!So, I took you to another pediatrician, who didn’t seem concerned about you having autism at all, although he did agree you had some developmental delays.  We were referred to a neurologist for a developmental evaluation, who after his exam wanted to do some routine blood work to rule out certain things that could cause speech delays.  When the blood test results came back, the neurologist called and said that he wanted us to have the test done again, because there was a high CK reading in your blood and he wanted to make sure the test was accurate before reaching a conclusion.  After the second blood test, we met with the neurologist in his office.  He told us about a rare disease called Duchenne Muscular Dystrophy.  That it’s a muscle-wasting disease that affects first the muscles of the legs, arms, and torso, then eventually the heart, lungs, diaphragm, etc. One in every 3500 boys are born with this disease, and those affected typically lose the ability to walk before age 12, and life expectancy beyond age 30 is rare.  Due to the extreme CK levels in your blood, he thinks you have Duchenne.  But we have to get genetic testing done to confirm this, which could take weeks.  I don’t know how we’re going to do this, because we leave for Texas in two days.”

We were packing up our home in Florida, because my husband had been promoted to a new position in Texas, where we didn’t know a soul.  About 10 days after arriving in Texas we received the genetic testing results confirming our beloved son had a deletion of exon 45 in the dystrophin gene.  David had Duchenne Muscular Dystrophy—a terminal disease. My husband and I were in shock, completely devastated, and over 1000 miles away from family. The thought of autism was quickly forgotten in the wake of this news, at least for a while Honestly, there’s a whole lot more to this part of the story.  David being diagnosed with DMD has unquestionably changed my life almost as much as it will change his, and I have dedicated countless hours to public speaking, running, fundraising, and advocating to help end neuromuscular disease. To read more of THAT part of our story, visit https://www.crowdrise.com/musculardystrophynychalf16/fundraiser/michellebussiere

Back to Autism, because no matter how much we were focused on his physical disability and what our future held, we couldn’t forget about David’s immediate needs.  Because of David’s developmental delays, he began evaluations of almost every sort, and soon began speech therapy and physical therapy twice a week. I made some new friends in Texas, and found that when we all got our kids together, David was, well… different.  He didn’t play with the other kids, but would be off by himself.  He did not speak to them or engage other children.  And he had an obsession with doors. Open/close/open/close/open/close/open/close. 
He started to become frustrated with his speech delay, and began having tantrums and meltdowns. He started to hit his little sister, Madison. Birthday parties were awful, because he would always have a screaming, huge-scene meltdownbut I didn’t want to offend my new friends and tell them “no” to every single party or play date. One of my new friends was an SLP who worked with kids on the spectrum, and by this time my “mommy radar” had kicked in and I knew something was definitely different about David, and it didn’t have to do with DMD.  I asked my SLP friend for advice, and she referred me to a wonderful neuropsychologist who evaluated David, and diagnosed him with Autism Spectrum Disorder just over a year after receiving his Duchenne diagnosis.

The neuropsychologist stressed that early intervention was key, and we found an extraordinary preschool for David that would supply full-time ABA therapy. David made progress in leaps and bounds during the three years he attended that school.  We had so much information at our fingertips, and behavioral specialists available to answer our many questions whenever we needed help.  David attended the same school until we were again corporately relocated out of state.  This time it was good news: we would finally be near friends and family in Pennsylvania.

We’ve been here in PA nearly six months now, and although we absolutely love our new home, to be perfectly honest: it’s been a struggle adjusting.  For any child, moving 1500 miles from the only home you can remember is traumatic—even if you’re excited about where you’re moving to.  But David has shown us that this move has been extremely difficult for him.  While waiting for the closing on our new home, we had to live in a hotel room for almost two months.  David’s behavioral issues skyrocketed due to all the change, and it didn’t help that I didn’t follow-through with many of his program protocols because I was just trying to keep him quiet and not get us kicked out of the hotel because he had another meltdown at an ungodly hour AGAIN and disturbed everyone within earshot of our room.  I thought things would improve once we got into the new house and settled in.  We’re still working on getting there.

There is nothing in PA even close to the school situation we had in Texas, and the waitlist for services here is long. We are still working to get him all of the services he needs, and although progress is slow (by my standards) we are slowly but surely getting where we need to be.   And even though I’m impatient to become settled here and provide David with everything I feel that he needs, I’m finding that my search brings me in contact with so many people here that I wouldn’t have met otherwise.  There are little blessings that come with a lasting impact from meeting people who you can relate to, and I am grateful for that.  

Our story is not just about Autism.  I don’t think anyone’s story really is.  But I hope that somewhere in everyone’s story there’s a place where we find hope. Each of us taking each day at a time, the good days and bad days in stride, the opportunities to love and learn from each other, to make the most of each moment we have together and never take our time together for granted—because we will never get those moments back.  And that whatever diagnosis we face doesn’t define us, nor does it define our children.  I look at my son after both of his diagnoses, and I know that these are just things he HAS, they are not what he IS.   He is so much more than that.  And while I will always wish I could make things easier for him, I would never change HIM at all.  And you know what, he’s still pretty darn perfect.  Spectrum, deletion, and all.

Michelle and David


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Friday, March 4, 2016

Somewhere on the Spectrum. Written by Cassandra Atkins

Somewhere on the Spectrum

Fourteen years ago the most amazing thing happened, our oldest son was born. Our lives would never be the same. We were parents. I remember his birth clearly. I also remember my doctor saying, "I have never delivered a baby that held up their own head and looked around the operating room." I remember that quote oh so well. Kind of a foreshadowing. 

He met all of his milestones. He walked at 9 1/2 months and talked the Saturday before he walked. He said bye bye. He was different. He never turned when we called his name. He didn't reach to be picked up but of course our first child, first grandchild for my hubby's parents, so why would he need to ask to be picked up? We had all the answers. My sister kept telling me about how he stared at the tv. A friend's child who was a few months older would repeat Dora, he never would. We had excuses for that, too. Finally, when he didn't keep gaining words, or if he said something no one could understand him, we talked to the doctor. 

She threw her hands up and said ADHD. He's two. She sent us to a psychiatrist. Probably the worst day of my life. He watched our son play. He talked to me and then in under thirty minutes he diagnosed our son with being abused by us. This brilliant doctor, informed me that we had to be abusing him. Why else would he act that way? I mean the fact that he was shocked that our son hated the Billy Bass singing fish on the wall and screamed if it came on but every other kid loved it, proved abuse. I grabbed the diaper bag, grabbed our son and left. I was pregnant with our second child and carrying a 50lb two year old so I didn't move fast. The doctor just sat there trying to convince me that we were to blame. We went back to our pediatrician and told her what was said. She disagreed and wanted to start meds. We refused. 

Fast forward.... he is four and has started speech. His birthday was late so he wasn't in school yet. No one has mentioned Autism. Everyone still said ADHD, and most wanted him on meds, we didn't. He had speech therapy that year but it never really made a difference. Still we went. The following year we moved. He was in pre-k and had an IEP with speech three times a week at school. He turned five that October and started talking, really talking that November. The school was amazing. A regular elementary school. He improved so much. He could handle crowds, partly because to go to the Mardi Gras parades he loved, he had to learn to deal with them. He quit covering his ears around 18 wheelers and even rode on a riding lawn mower. Then we had to move.

To say us moving was hard would be an understatement. The first thing the principal, at the new school, said was he's going to be a problem. He was still in speech and progressing. He was a straight A student. That changed. Speech was still going ok. He stopped reading on grade level. He stopped being ahead of the class in math. He was bullied not just by students but by teachers too. They lost him after school one day. I went to pick him up and they couldn't find him. I had both of his brothers in my van and the vice principal leaned on my door so I couldn't get out. When he came to the van, 15 min later, I asked him where he was. He told us he didn't know, it was a room that he had never seen. He was pushed down and kicked in the ribs by a student and it was caught on camera. Nothing was done until I, who had been notified anonymously, demanded action. He received an in school suspension for the tips of his fingers grazing the waistband of a girl in front of him in line, he was still in second grade. I wasn't notified until the bus driver told me the vice principal put him on the bus crying. He was punched in the stomach and the back while on the bus. Again I wasn't notified until after school by the bus driver. Again I had to call and demand action. They had a field trip and I told them I had to go with him. They wouldn't let me. His teacher, who I trusted and his special ed teacher promised to stay with him. They lost him. He was gone for about 20 minutes. The teacher called me, after school, to tell me. The principal told her if she called me she would be fired. 

Third grade came and his dad and I were threatened with child services. He was 9 and it was time to change his special ed qualification. They were refusing to test him. I refused to give them the misdiagnosis of ADHD. The principal threatened. I won. I informed her of his rights and how she was breaking the law. Oh and the vice principal was fired before the school year started for discrimination against special ed students. Our son's teacher let him sleep because he looked tired. He slept most of the year. He was falling farther behind in reading. 

Fourth grade started and he had a hard time sleeping at night which made him sleepy during the day.  His teacher told him to go sit in the corner and sleep if he wanted to.  So, he did. He had a bully that year and she was bad. Then I got involved and amazingly it stopped. He slept at night for the rest of the year.

We moved a couple of miles down the road and into a different school district. A whole different county. Best thing ever. He is now in 8th grade. The child who we were told would never speak, never write, never run, etc. participated in middle school band for two years, played little league football, and is currently taking robotics as his science elective. Thursday night he read a question out of his 8th grade history book without stumbling. He is making A's in math again. Making A's & B's in all of his classes. It took some work but he is back on grade level. Our current school, with plans to never move again, is amazing. He has had his bullies and been picked on but it was stopped before I even found out. The teachers are great with him, and the students love him.

What I want the parents new to the autism diagnosis to know is that "they" aren't always right. Just because you are told they won't, doesn't mean they can't. Don't let someone saying "it's your fault" stop you. You know it's not your fault. I've discovered a lot of parents have heard this. It's not true. Keep fighting and don't give up hope!!!!

Here is is ready for his first robotics conference.


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