Stories of Hope

A Little Boy Who Was Delayed And Nonverbal

Elijah was born February 16, 2009. I was so excited when he was born because me and my husband already had three girls and when Elijah arrived he made our life complete! I noticed the first few months of Elijah's life that he did not coo, babble, laugh out loud, or even cry tears when he was wet, stinky, or hungry. He would mostly holler when he wanted something but the majority of the time Elijah always had a big smile on his face. Then at the time he was suppose to be sitting up, crawling, pulling up to stand, and walking he was delayed in these areas. People would often ask me why was he not doing these things yet and I would tell them that he was my last baby and I done everything for him. When Elijah turned nine months old I was introduced to Early Intervention until he was the age of three. During this time he received PT, OT, and Speech. Now Elijah is your typical four year old but he is still nonverbal and very hyper now. In 2012 we took him to Lehbonheur to have a sleep apnea test done thinking maybe lack of oxygen to the brain is why Elijah was not talking but it came back normal. A few months later Lehbonheur done a MRI of his brain and it came back normal so Lehbonheur finally done blood work and it came back that Elijah has a Microchromosome 16 Deletion Syndrome. This I had never heard of before in my life but the doctor explained to me and my husband that the brain has 46 microchromosomes and the number 16 is your speech and this is why Elijah does not talk. The doctor did mention that some children never talk and others are later delayed. The characteristics that follow this syndrome is Autism and Hyperness. Elijah continues PT, OT, and Speech but the good news is me and my husband both have heard him say momma, da da, Acie for his sister Gracie, and cheese for the camera.

Joanne
Fulton, MS

Oliver's journey.

Oli struggled as a baby....feeding issues were apparent from the age of just 2 weeks. We spent the first 4 months of little Olis life in and out of hospital trying to get him feeding and gaining weight. Finally we got the right milk, Oli had cows milk protein intolerance and severe reflux. By 6 months Oli started to settle and finally started to gain weight again. However, Oli was now starting to struggle with his milestones. He didn't sit unaided till he was nearly 1. He never crawled or pulled himself up and didn't walk till he was 18 months and even then if he fell he wouldn't put his arms out to save himself, or fall on his bum so we had to constantly follow him everywhere. Initially we blamed it all on the feeding issues...surely that had to have an effect on his progress but when by the age of 2 he still wasn't catching up or attempting any words, his fascination with spinning things and the flapping of the hands all gave me reason for concern and I suspected autism. I contacting our HV who got us In to see a paediatrician. Our journey began there.
Oli is now 4. He attends a specialist nursery and is really beginning to bloom. We still have no words, and his fascination for cars and tractors is immense. 6 months ago Oli was diagnosed with severe autism. I left that assessment feeling nothing but relief...that now finally Oli would get the help he needed. It's been a tough journey and Communication couple with sleeping issues is a real challenge for us all at the moment but I know when Oli is ready he will find his voice. We all love our little oil, who has a smile like sunshine and I thank god everyday for sending him to me.

Anonymous
Canterbury, United Kingdom

Jayse's Story

My son was diagnosed with Autism at just a little over 2 years old. I knew there was something not right around 6-8 months old. He was going right along on course and then it just seemed as if everything stopped and Jayse went backwards. He would not make eye contact with me, that was my very first concern because he would look and smile at me all the time before. He flapped his arm and hummed, he had no fear of anything and purposefully play was out the window.

Not to add that Jayse's father and I split right in the middle of all the concern and chaos! It was very hard to convince his dad that there was something going on with Jayse that needed to be addressed. He only wanted to point fingers and play the blame game. He finally came around after about 6 months of hell. We work together now great and I so thankful for this because Jayse needs us both to be on board for success.

He has been in therapy for almost a year now and is a student at a great school designed just for him. There has been great improvement just in this past year. He still does not speak. Jayse will be 3 in May. I know in my heart that I will hear my sweet boys voice when he is ready. He sure does try but he just can not get it out. There are still many things that need a lot of work like his, attention span, biting and pinching when he is angry, constant movement (He never sits down), answering to his name and giving other people he does not know or children the time of day.

I am very thankful each and every day for God giving me this special gift. Jayse has opened my eyes to so much more than I had ever seen before. Jayse and I have a great support system and I know he will be successful in later life because he is getting early intervention. (Autism Awareness)

Melissa Beatty
Shepherdsville, KY

Working with Children with Autism

I was introduced to Autism through my Psychology Major courses. We learned so much, yet so little about what Autism really is. I was always interested in and loved working with children in the past, so when a friend recommended I apply to work as an ABA Therapist, I jumped at the opportunity. I figured my background in Psychology would help immensely.

I now work with two children with Autism, one who is very high functioning and the other who is high functioning but with language deficits. I've been working with one of the children for almost a year and a half and with the other for almost half of a year. I've seen progress in both cases, progress that has come with blood, sweat, and tears. I've become part of the family, and what I've learned from my two kiddos is invaluable.

I've learned to stop taking myself so seriously. I've learned to slow down and enjoy the little things. I've learned that every day is a new day, a blank canvas. I've learned that nonverbal communication is just as important as verbal communication. I've learned to accept others unconditionally. I've learned how to be patient when I feel frustrated, defeated, and exhausted. I've learned how to be compassionate and understanding. I've learned to be an advocate for others. But most of all, I've learned that every child is unique and valuable in their own way.

Autism has truly changed my life for the better.

Anonymous
St. John's, Canada

There is a Reason for His Behavior

My son, John-Paul, was always behind with milestones. He didn't walk until he was 18 months old, and he only spoke a few words. When you spoke to him, he didn't really seem to understand, and he had trouble making eye contact. Certain noises seemed to be painful for him, like the buzzing of an alarm clock or hair clippers. He had sleep disturbances and had night terrors. Our pediatrician didn't find anything wrong with him, however, because he was always on the tail end of "normal." Moreover, he has always been very good with numbers and with putting things together, so we knew he was smart.

It wasn't until he turned two and began having trouble at preschool that my husband and I noticed that anything was wrong. He couldn't sit still and follow directions. He got easily frustrated and threw tantrums. He wouldn't cooperate with potty training. His daycare teacher seemed to hate him and he dreaded going there. We changed daycares twice more for similar reasons.

We were frustrated. Was our son a bad kid? What were we doing wrong? We took him to the pediatrician, where he was immediately diagnosed with ADHD. We also took him to a behavioral psychologist who noticed the delays. We finally got him tested by the school district, and they diagnosed him as uncategorized autism. They said he was high functioning and had to be monitored for at least three years, and maybe then he can have a firm diagnosis.

Today, he is almost three and a half. He attends a special preschool program and he loves it. He is understanding and speaking more, and he is almost fully potty trained. As it turned out, HE didn't need to change. WE needed to learn to understand him and his condition, and to get him the help he needed. He is still my bright, funny little man, and we are so grateful for the support we receive. Because of his teachers and his therapist, I know he will have a bright future.

Nicole Dilts
San Angelo, TX

I am not a parent

I am not a parent or no someone with a child with Autism. This site has helped me understand and learn more about Autism and about how the earlier the intervention the better their chances are. I have been interested to learn more about Autism for over 20 years and I have learned a lot on this site and want to learn more about Autism. Thank you all to the ones that have told your story on this site you and your child is a hero in my book.

Kim Egbert
Idaho Falls, ID

Our Sweet Myah

Myah was born a healthy 7lbs 7oz. Her first 15 months of life were very typical. She was meeting all of her milestones on time, she was a social butterfly and her language was starting to take off. What seemed like overnight, everything changed. Myah stopped playing appropriately, she stopped talking and she became very reserved and shy. At 18 months, I contacted early intervention and at 26 months she was diagnosed with autism.
My heart shattered. My husband and I felt numb. We didn't know what to think. We immediately felt grief and sadness. I quickly wiped away my tears-I knew I needed to be strong for Myah. I began researching day and night. I was determined to give my daughter the very best.
Myah just turned 3. I am ecstatic to say that just tonight, she said "Hi!". It has been a long 21 months without her voice, but tonight, we heard it again. Her Daddy and I couldn't be more proud!!! Myah sees a DAN! Doctor every other month and attends a developmental preschool 4 days a week. She is in speech therapy, occupational therapy and equine therapy. She loves equine therapy and has a great bond with her horse, Clover.
Myah is an incredible little lady and I couldn't be any happier to be her Mom. She has taught me so much. Life is not at all how I envisioned it to be and it certainly isn't perfect but I have learned that life doesn't have to be perfect for it to be absolutely wonderful.

Nichole
Capital Area, PA

My princess

My daughters name is Elisa Loraine Perez. I could tell my princess was different since she was a baby but her dad and family didn't agree with me...they said she was just being a kid.I should have followed my instinct. ..we have been through a lot...both children and adults have misstreated her because of her behavior. In first grade she was diagnosed with adhd and I told her psychiatrist I thought she had other problems but he didn't listen. Finally last year I said the hell with everyone and I took her to a specialist n she was diagnosed with PDD (pervasive devolpmental disorder). Now she's a small special ed class and she's in a new school learning more than ever. Soon she will be reading and writting...can't wait. Better late than never

Rosie
McAllen, TX

Rollin' with Autism

I didn't even notice the signs. People outside the home did. I thought my son was perfect, as all parents do. "Normal" if you will. But people started pointing out that he never made eye contact, that he was sleeping/ wanting to be in his room WAY too often, and I started paying closer attention. He wasn't responding to his name, he was looking up at the ceiling at random times and shaking his head "no", swinging himself in his baby swing and flapping his little hands. He was 18 months old when he got diagnosed with Autism. Some of his "skills" were as low as that of a 10 month old and he was always in his own little world. He is 3 now, and sometimes...you can't really tell. He makes eye contact now....he responds (for the most part) to his name...he laughs. He plays. He's "here". He wants to cuddle & kiss & be around his sister and I. He loves school, he loves baths, he HATES brushing his teeth. Lol. I am lucky to have such an "ausome" child. He has taught me more than I could ever teach him! <3

Anonymous
Hondo, TX

Our Son Jayden was born on April 6, 2008

By the time our son turned 1yr we could see he had some delays but we thought and family thought he was just a boy being a stubborn boy.

But as time went on and years pasted and he turned 3yrs I kept noticing that most of the things that I was teaching him he was forgetting. Like calling me daddy instead of mommy we thought he was being funny but he really didn't know how to.

Then by age 4yrs it was time to put him in school. That's when we were told he had a speech problem but by that next two months after he turn 5yrs and all of his testing, and filling out paper work his school sat us down and told us he has ASD and to go to his doctor and have him officially tested to confirm.

Well we did and on August 16, 2013 they too told us that are son has ASD. Now the school calls him high functioning. But the doctors say that though he can function to a point at school he to his doctors are severe to moderate he has the mind set of a 2½-3yr old.

He can speak 1-4 word sentences most of the time with help. His main speech is what they call jargon. They say he might not ever fully be verbal. He is in kindergarten special education and for 1-2 hours he goes to the regular class room because his cousin is in there and it helps keep him calm.

Now that we are starting to get the help he/we need it can be overwhelming at time for him and for us. But with the help of family friends and the autism community we are checking off some mile stones almost everyday.

Monica Daikai
Sacramento, CA