Friday, February 26, 2016

Somewhere on the Spectrum. Written by Krystina Steinhauser

Somewhere on the Spectrum

October 2005, my husband and I were excited to find out we were expecting what we thought would be our second child.  To our surprise at our first ultrasound, there was not one but two babies!  The technician kept going to one side of my stomach where I saw a baby then to the other side of my stomach where I saw a baby.  I looked at her and said “Is that two babies??” to which she replied, “Oh, you didn’t know?  Yes, there are two babies!  Congratulations!”  I thought I was going to pass out.  My husband was in the waiting room with our then 4 year old daughter.  I said, “can you please go get my husband?”  After they brought them into the room, my husband said is everything okay?  The technician showed him the two babies and said “It’s twins!”  My husband and I looked at each other with a look of panic and fear while my daughter starting yelling “Two babies!  Two babies!”  After a few days, the shock wore off and we accepted that this was going to happen.  We later learned it was a boy and a girl.  It was perfect.

The rest of the pregnancy was normal.  Baby A was our little girl, Vanessa and Baby B was our little boy, Dylan.  Vanessa was always the dominant one.  She was never hiding in ultrasounds and was always moving around.  Dylan was always being covered by Vanessa and was always harder to find in ultra sounds.   Vanessa was always the more dominant baby in the womb.  This did not change when my doctor finally decided 37 weeks was long enough and decided to induce me.   With just three little pushes Vanessa came into the world at 12:45am.  After his dominating sister finally left, Dylan decided to sprawl out.  After 30 minutes of doctors trying to get him to turn and him continually refusing to do so, they decided to perform an emergency c-section.  At 1:14am almost 30 minutes later, Dylan entered the world.

Life with twins was not as horrible and unmanageable as I thought it would be.  It was definitely an adjustment but both babies were healthy and flourishing.  Dylan was always a fussier baby.  He spit up a lot but otherwise was hitting all of his milestones with crawling and walking.  At around 1 we started to notice a difference.  Vanessa began babbling and noticing people.  When someone came to visit, Vanessa would walk over to them while Dylan would just sit, staring at the tv or a toy.  He kinda seemed to be in his own world.  After voicing my concern to my pediatrician, she would tell me I can’t compare them, they are two different children and boys and girls develop differently.  But deep down I knew something didn’t seem right.  One day, my mom was over for a visit.  Vanessa walked right over to her while Dylan sat there just staring at the tv.  My mom kept calling his name to which he didn’t respond.  She went up behind him with a pot and spoon and started banging it, once again, no response.  We started to think it was his hearing.  So we took him to get his hearing tested.  To our surprise, the results came back normal.  Again I voiced my concerns to my pediatrician who finally agreed to get Dylan early intervention services.

Dylan was 18 months old when he started receiving early intervention.  Our therapist, Schelley was amazing.  She would work with Dylan trying to get Dylan to say some words.  At this point Vanessa’s vocabulary was starting to take off and she became the “voice” of the twins.  When she wanted juice she said juice and when I would get juice for her, I naturally got it for Dylan as well.  We decided to stop just giving things to Dylan because Vanessa had asked for them.  If Vanessa asked for juice she got it but Dylan didn’t.  He would see Vanessa with her juice and would get so angry and frustrated that he didn’t have juice that he began to throw things and knocked things over in a bit of a rage.  We thought this would force him to use his words and ask for something he wanted but it didn’t.  We continually worked on his vocabulary.  I clearly remember a barnyard puzzle he had.  He loved doing the puzzle and every time he picked up a piece we would say “cow, moo or duck, quack.”    Finally one day at around age 2, Dylan was sitting doing his puzzle and we heard “cow, moo, duck, quack.”  I sat and cried, finally our work was paying off.

After that, Dylan’s words started coming out, slowly but surely.  The A-word had crossed my mind and as most of us moms do, I had done hours and hours of research about it and the signs Autism but besides the lack of speech and eye contact, Dylan didn’t have any other characteristics of Autism.  He didn’t flap his arms or rock back and forth, noise didn’t bother him, etc.  Deep in my heart I knew something wasn’t right but I wasn’t sure what.  I prayed and prayed for it not to be Autism.  Maybe he was just delayed and to this point that was his “label”  developmental delay.  On the twins 3rd birthday, we took them to Sesame Place.  Dylan was happy and enjoying the park until we got to the merry go round.  The music was very loud and he stood there holding his ears and rocking…at that moment I knew.

Shortly after that, we took Dylan to be tested by the Developmental Pediatrician.  The first time he was tested, his results came back as typical developing.  I was mixed with emotions, relieved it wasn’t Autism but upset because without a diagnosis, services were limited and I knew he needed some type of help.  The doctor recommended having him re-tested.  So after 9 months we had him tested again, this time he fell into the “PDD-NOS” category.  Finally, a diagnosis.  I was relieved and sad at the same time.

After getting the diagnosis, we didn’t want to take him anywhere over fear of a meltdown.  It started to affect our family.  The girls would want to do things and we would either not do them or I would take them while my husband stayed home with Dylan.  I realized that we could not live this way, Dylan was tolerant to change and we were very quick to pick up on things that bothered him.  Our family is a HUGE Disney family.  We had taken the kids when the twins were 22 months old.  Dylan was fine on that trip.  Nothing to even tip us off to his Autism.  We wanted to go back to Walt Disney World.  At first I remember thinking that there was no way Dylan could tolerate it.  He was now 4 and things like noise, waiting in long lines and crowds would be too much for him to handle.  Those things are hard enough for a TD child to handle let alone an Autistic child.  At first we said no.  The girls were crushed, I was crushed.  Disney was our happy place and the thought of never going back killed me.  I spent months researching about Autism at Walt Disney World.  After reading all of the accommodations Disney makes for families with an Autistic child, I decided we had to try.  I booked the trip and thought this is either going to be the best trip ever or the worst trip ever.  The first day at the hotel was great.  The kids played at the pool and loved the resort.  The next morning we got up to go to Magic Kingdom.  My favorite part of Magic Kingdom is the opening ceremonies.  I remember the train arrived, the characters got off and the music started playing and Dylan lost it.  He started screaming and crying.  I thought, that’s it, trip is over.  I said to my husband, we’re here, we have to at least go in, if it doesn’t get better we’ll leave.  We got through the gates and as soon as we started walking down Main Street, the Disney magic set in.  Dylan was in complete awe.  He wanted to see all of the characters and go on all the rides.  He was just your average kid enjoying every moment at Walt Disney World.  During my research, I learned about (the then) Guest Assistance Card.  Having this card allowed families that have a child with a disability pretty much go to the front of the line so they didn’t have to wait in the long lines.  The trip turned out to be completely magical.  Dylan was calling out characters names when he saw them.  He would run up to them look them right in the eye and say hi.  It was like someone sprinkled pixie dust on him!  He was being verbal, making eye contact and being outgoing!  When we returned from the trip I was so inspired.  I knew that if our family could survive a Disney vacation with an Autistic child, any family can.  I decided to become a Disney Travel agent.  I graduated from the Disney College of Knowledge and have now helped numerous families make their Disney dreams a reality.

Dylan has had many wonderful therapists through the years.  BSC’s, TSS’s, MT’s, Speech Therapists, Occupational Therapists, Etc.  There were times where he was seeing several therapists a week.  But all of that paid off.  Last year, Dylan was dismissed from all services because of the progress he’s made.

Vanessa and Dylan are now almost 10.  Dylan is in 4th grade and mainstreamed in a regular classroom which he has been since Kindergarten.  He is doing incredibly well.  When it comes to his schooling, I’ve had to fight and advocate for a lot of things.  One of the hardest things I’ve had to learn is that you need to fight and be their voice.  His school has been wonderful and accommodating to him and because of that he is flourishing.

I am amazed at how far Dylan has come.  His vocabulary is the same as his sister.  As a matter of fact some days I think back and laugh when I thought he would never talk.  Now there are times when he’ll talk for 10 minutes straight!  He is such a sweet, loving boy and I wouldn’t change a thing about him.  I think my oldest daughter nailed it when one day she said to me, “Mom, I don’t want a cure for Autism because I love Dylan just the way he is!”


Krystina and her family.

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

Friday, February 19, 2016

Somewhere on the Spectrum. Written by Anna Grym

Somewhere on the Spectrum

*This story starts with a letter about when was first diagnosed.  Then entries about how much progress he has made over the next 3 years, almost like a diary.  Enjoy!


Gavins Story.

Gavin was a full term beautiful 6lbs 13oz baby boy.  There were 10 tiny fingers and 10 tiny toes and no signs of anything to be concerned about.  His big sister Gabriella was a thriving typical child.  Autism had never even crossed our minds!

When Gavin was about 18 months old we noticed he was delayed in a few areas, speech was lacking, fine motor skills were not developing and this baby never slept.  Our pediatrician started getting concerned, but not enough for an evaluation yet.  By the time Gavin turned two he barely spoke at all, and still no gains in fine motor and sleep was nonexistent!  We were referred to early intervention for an evaluation. Gavin qualified for speech and occupational therapy in home 1 hour of each a week.  This continued for a year and at 2 ½ he also started private therapy speech and ot every week.

We were approaching his 3rd birthday and still not much progress.  His therapist recommended an evalshe had even dropped the word Autism.  We began to panic.  Our hearts sank.  How could our son be or have that!?!???!!?  No way!  Not our perfect baby boy!  I mean he has eye contact, he speaks some words, and he doesnt slam his head on the floor!  Our son is fine.  After some research and hours, which became days of crying, the call was made. 

We saw an amazing psychologist who was very nice and saw him privately so we would not have to wait the 1 ½ yrs to get him into a developmental pediatrician.  And that was when we received the first diagnosis.  Our baby is on the spectrum.  

Therapy was bumped up.  He has therapy at school twice a week, at Good Shepherd speech and ot, he has behavioral support full time at school, and 15 hours a week in home.  And finally we have PROGRESS!! 

Since then and after multiple evaluations, we have seen a Developmental Ped and received our second diagnosis of Autism, and recently he went for a diagnostic Autism test to confirm for a third time his diagnosis Autism Spectrum disorder.  Each and every time I cried, but each time I cried less.  No matter what he is labeled, to us he is perfect!


Sincerely, 
Proud Parents of a typical and a neurotypical child
Floyd and Anna Grym
And the most amazing Big Sister ever,
Gabriella

Thank you for reading our story.  


Here are entries about the past 3 years.  

Gavin is now 6 years old; our 6 pound baby boy is getting so big!  He has been in therapy for well over half his life, so for him this is just the norm!  He has realized he is different.  We have talked to him about autism and told him thats why he has therapy and home support.  We have explained to him that is why he struggles with many sensory issues.  He still gets overstimulated easily, and needs deep pressure and jumping and running to calm down and self regulate.   

We started Aromatherapy a few months ago.  So far he seems to be responding well.  Sleeping 6-8 hours a night, more focused, and less stimming. All in all he has progressed so much!  His speech and fine motor is just about at age level now.  I wish I could say that we were the reason for all these gains, but honestly we have had a village of support!  I can't thank Miss Amy, Miss Judy, Dr Jibilian, Sandy, Miss Donna, Miss Jen, Dr Kinney, Miss Nicole, Miss Maren, Miss Lacy, Miss Michelle, Miss Lynn, Miss Laura, Miss Desireah, Miss Holly, Dr Iyangar, (in no specific order) and all the therapists who have filled in over the years, and all our family and friends who have helped and supported us through this journey, enough for all their help!!  And my dear friend Katie who introduced me to Young Living oilsthey are giving us hope!  They werent lying when they said it takes a village to raise a child!

Gavin is now 7 years old.  I can remember the day I thought Gavin may never speak.  Would never be able to put a sentence together.  There was a time when I thought my son may never tell me he loves me.  Yet now at seven years old his vocabulary is better than most his age, he is writing, reading, excelling in math, coloring in the lines, able to participate in gym and art class, he knows more about the planets and animals than anyone I know.  Music is still a challenge as it's much to loud for his sensitive ears.  He is behind in reading.  Socially and pragmatics are still concerns.
Gavin still struggles to stay calm in some situations.  We still have safety concerns as normal fears have not set in for Gavin and he will still wander and roam.  He will stim and need sensory breaks often.  His food selections are down to about 20 total items in his diet so I need to be very creative and puree many veggies to hide in spaghetti sauce.  

Gavin still struggles controlling his body and has issues with change and anxiety about many things.  Still using Aromatherapythat's been a life changer for us!  It's true what they sayYou need to look back to see how far you have come!  I have many more thanks to add to our village these days, Miss Nora, Mrs Seagar, Mrs Merril, Mrs Seaman, Mrs Keller, Miss Joyce Dr Matt.  We have been truly blessed with an amazing team of support.  I appreciate all the teachers who have worked with Gavin since he was 3 years old and their patience and understanding with him.  I know Gavin can be difficult at times, but if you open up and let him in you will see and meet an amazing little boy!

Gavin is turning 8 years old.  Where has the time gone?  He is on grade level for all academics including reading and above level for math.  Even in the advanced math class.  There was a time he was so far behind I wasn't sure he would ever catch up.  He works hard everyday.  He is such an inspiration .  

We still struggle with food, loud sounds, socially, still needs sensory breaks, and often it hard to control his emotions.  His teacher is so kind and patient with him this year.  Thank you Mr Molitoris!  Progress is still happening even though we moved.  He had some setbacks with the loss of a dear friend due to the move.  We stopped all home support.  We continue aromatherapy which is part of our natural lifestyle, and use essential oils daily.  We have been able to support his body and he rarely sick which is huge because that throws him off big time.  He's calmer, and almost never stims.  We are working on some anger issues and working to build his self esteem.  But againprogress is being made!  

Huge shout out to Gabriella who is the most amazing big sister.  She is so patient, kind, and caring.  I thank god everyday for giving Gavin the best sister a brother could have!  Here's to another amazing year!


Anna and her family.

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

Friday, February 12, 2016

Somewhere on the Spectrum. Written by Kim

Somewhere on the Spectrum

There were signs...there were always signs. I would call his name and he wouldn't respond, transfixed on whatever tv show he was fixated on. The stories he would tell me that started in the middle, without context that were delivered in his flat, monotone voice. The stare that was super intense, the need to sniff things, the joy at being in tight spaces...the signs were there all along but it took years for me to put the pieces together.

When Connor was 10, I worked at his school as an educational assistant. The staff room overlooked the front area where the children played during recess; one day while the children were outside and I was on my break I noticed him out there, all by himself in a sea of children. Children who were running after each other, screaming, teasing, kicking balls, jumping rope. Connor was walking in a circle. I turned to his teacher and asked if she'd ever seen him do that before and she hadn't...but everything started clicking for me. The time he was in the bumper cars driving in a tight circle in the corner while everyone else interacted, the rages, the sleep problems....it's like all the pieces had been floating around me and suddenly dropped into place, forming a perfect picture. Connor had Autism. I knew it in that moment.

The path to an official diagnosis was long and complicated but we did finally get the diagnosis of Autism shortly before his 11th birthday. Even though I knew it was coming, I was completely unprepared for the emotions that came with the diagnosis, the fears and uncertainty. Connor, such a smartie pants...he knew what the testing and appointments were all about. When we got the diagnosis and I shared it with him, I asked what he thought about it. He said "I'm still the same person I was yesterday". Wise beyond his years! Things weren't ok, but his acceptance and belief in himself have carried us a long way on this journey.  

Connor has always had a daredevil streak and a wild temper and as he got older, both got harder to manage. There were meltdowns that involved broken windows, sharp objects thrown in our new pool within days of installation...and later experimenting with smoking, then drinking, then drugs. Through all of it, we have mostly struggled alone...my husband and I are solid but we don't have a lot of support from family and friends. We live in a rural area without a large Autism community and have always struggled with a lack of understanding and awareness about how difficult this journey has been. "He doesn't LOOK like he has Autism"...whatever the hell that means. "But he functions so well!" No one really understands the desperation we have felt at times while raising him.

Connor has always been strong academically; in high school he took a full slate of science and math courses with an eye towards taking a science degree in university. We were proud and terrified at the same time. There were still major bumps in the road; Connor got his driver's license then totalled my car driving too fast while on a fast-food run at lunch time from school (he didn't have permission to be out with my car at lunch due to a previous indiscretion). It seemed that each time he would regain our trust, he would blow it again. During his high school years, he did his best to hide the fact that he was Autistic from his peers; he changed schools at the start of grade 10 so was around mainly new people. He hid many of his quirks and gravitated towards people who were on the fringes...unfortunately those people weren't always good friends.

Connor was accepted into a science program at a university four hours away from us; he was convinced that he wanted to go away for university (his older brother attends university 30 minutes from home) and while we were petrified, we also knew he would learn independence in a way that wasn't possible if he stayed close....so at the end of the summer, we packed him up and drove him to his new home in residence at university. We dropped him off Saturday morning; there was music blasting and the older students welcomed the freshmen with open arms. Connor was just one of the gang! We drove home feeling worried and proud...and then Connor's daredevil streak got him in trouble again.

2:00 Sunday afternoon (the day after we dropped him off) and I had just sat down with a cup of tea; my husband and younger son had gone to our older son's apartment and I had just finished cleaning Connor's room when he called. His university is built on a steep hill and one of the activities they had arranged for frosh week was a slip-and-slide (long sheet of plastic with soap and water)...Connor's daredevil side had him running and jumping onto the plastic...and he broke his femur on his last run. He was transported by ambulance to the hospital and would need surgery. I threw a few things in a bag, jumped in my car and took off, calling my husband on the way. I spent the next week with him in the hospital, sleeping in short bits on a cot they were good enough to bring in for me. He had to learn to walk again, do stairs etc. Classes hadn't even started yet and his semester was in jeopardy but his stubborn streak wouldn't allow him to take time off. I rented a wheelchair, bath seat etc. His residence committee arranged for him to have a room on the first floor near the bathroom and moved all his things for him while he was still in the hospital. Filled with trepidation, I took him back to his university and while he was in the bathroom, I started moving a few things around to allow him better mobility in his room. That's when I found the bong.

Once again, trust gone. I confronted him then drove home fuming...I felt betrayed. Over the next few months, we clawed our way back towards a (somewhat) normal relationship. He came home for Thanksgiving and was walking with crutches; we had a great weekend as a family and I looked forward to Christmas.

By the time he came home for Christmas, he was able to drive again; he took the car and went to visit a friend one day...when he came back, he went up to his room without stopping to say hi so I popped into his room...and all I could smell was weed. Angry doesn't even begin to describe how I felt. We sat down with him and explained the potential implications of the decisions he had made and made it clear that this was the last time. If he wanted to stay with us, he couldn't use drugs. Period. We knew he was struggling with accepting his challenges, that he was depressed...we offered to arrange for counselling. He wouldn't hear of it. It was a long two weeks before he went back to university.

And we clawed our way back to "normal" again. Connor finished semester 2 and returned home for the summer; he got a job at McDonald's, working full time. We had the drug discussion when he came home and really, he had little time or freedom to make it happen...but he did make it happen, right before returning to university for the fall. My husband caught him outside one evening, smoking pot after I had gone to bed.

Nobody outside of my husband and I get it. My mother in law told my husband I should be able to keep a neater house and have more time to entertain them when they come; what she and no one seems to understand is that there are days..weeks...months where I don't even know who I am anymore. We are so locked in this battle for our son that things like sending birthday cards to family members are no longer important. I don't have time for people who can't accept where we are in our life right now because it is chaos, absolute madness. On top of what we go through with Connor, our youngest son has a NVLD, anxiety and epilepsy and this fall sustained a serious concussion while practicing for his sport...but I still have hope.

Connor barely made it through first semester this year; he is in his second year of university now and lives in an apartment with two roommates. Somehow, somewhere along the way this fall, through the struggle and despair, something clicked for him. He has finally accepted that he needs support. He arranged for counselling at university, has talked to his academic advisor about reducing his course load and doing his degree over five years instead of six...he came home at Christmas and worked at his job. We made it through the holidays without any major incidents; he is attending all of his classes and getting his work handed in. He has even come up with a strategy to help him focus in class and reduce his ticks (which were apparently disturbing his classmates)...a stress ball! For the first time in a long time, there is a tiny bit of light in the darkness.

I tricked myself into believing Connor would have a "normal" progression through the teenage years to adulthood and beyond. All the people in our lives who believe he is like everyone else...well, I guess they rubbed off. I've had to come to a place of acceptance (again) that this journey is far from over. I don't know how much Connor will need our support in the coming years but I do know that he is closer to independence now than he has ever been before. He is even starting to tell people he trusts that he has Autism...and that is a big step towards his acceptance of self. I couldn't be prouder.

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

Friday, February 5, 2016

Somewhere on the Spectrum. Written by Jennifer Bortz

Somewhere on the Spectrum


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

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

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

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

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

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

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

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

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

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