Stories of Hope

A new friend in an unexpected way!

Up until about almost a year ago my son was actually ahead of others his age. He was saying the names of close relatives and friends (or at least trying to). Well he ended up going back to just babbling and making noises and at first I thought it was a sibling jealousy thing because he had a baby brother who didn't speak yet. What I wouldn't give to hear him say I love you again. My parents told me I should speak with his doctor about having him evaluated for autism. I didn't listen. Well a couple weeks later I spoke with a neighbor whose son was diagnosed and my son and hers were very much alike in a lot of ways. The boys now play together and she and I are best friends. Then I decided to speak with his doctor about it. My two year old boy was diagnosed August 5, 2013 at 10:47am. Before I went to this appointment I had researched and thought I had prepared myself but it didn't help much. I knew it wasn't anything terminal but it still hurt. I had actually asked my mother " Why mom? Why my baby boy?" But I have learned that it is a different journey and it has made every bit of progress he has made in the last couple of months that much sweeter. My one year old is a different story he has been behind on everything since he was six months old and still does not say anything and is being evaluated for autism in November. So through all o this my son and I gained new friends.

Anonymous
Bloomington, IN

Rocky Roads are sometimes the best!

Our lives changed on January 11, 2004 when a chubby-cheeked handsome little man came into the world screaming. Little did we know this was the start of endless hours of hearing this.

I noticed something was different almost from the beginning. At a couple of weeks he started attending his brother's wrestling tournaments where he would scream until I would take him outside. He would do the same thing at family functions and in stores. Family told me, "He is just a momma's boy because you have spoiled him." I have six other children and had been doing everything the same.

In January 2006 I returned to school to get my teaching degree and enrolled him in the preschool on the university campus I chose to attend. We saw the same behaviors in him we saw at home. He was throwing himself on the floor screaming and kicking, or running out to the room. At this point he would only say approximately four words. When I brought this up to our pediatrician, family, and friends they would tell me it was because his older sisters were doing the talking for him, so I believed it. Deep down I knew this wasn't right.

It was when I was sitting in my class learning about teaching Special Needs Children that a light came on and tears of joy trickled down my face. I knew I needed to have him tested for Autism. I talked to his preschool teacher about getting the testing done. He got an IEP written up for Early Child with Developmental Delays which got him speech therapy and help with social skills. At the end of Kindergarten this IEP needed changed and the school district he was in decided he no longer needed services. This wasn't good enough for me so we moved and he is thriving in a district where he gets the help he needs and the teachers are very kind and understanding of his outbursts.

I am truly blessed to call him my son and thank God every day for sending him to me!

Kelly
Lee's Summit, MO

Valkyrie's Journey

My beautiful little girl was 18 months old when we stepped in to the doctors office for her regular checkup. I knew at that point something wasn't right because she didn't talk, was self harming and having meltdowns almost daily. Her favorite thing to do was sit in a chair and "bump".

Our doctor referred us to an agency here who does autism screening and I will never forget the day, after all the testing, that I heard the words "your daughter is autistic". I felt like my world was caving in.

but as time goes by I realize that autism isn't something to be sad about. My daughter teaches me daily about being a fighter, being strong, and allowing yourself to be unique.

And through all the doctor appointments, OT, home therapy, speech therapy and more. She is my little trooper and endures whatever is thrown at her with a grace that I only wish I had. She is truly my hero.

It's like my favorite saying....

Autism is a journey I never planned.....
but I sure do love my tour guide

Sheeya Worth
Salem, OR

Jack's Journey

Jack is 11. He has severe Autism. He is perfect to me. My pregnancy with Jack was different than with his sister Lily. He was very inactive. Hardly ever moved or kicked. I remember having the worst headache of my life when I was two months pregnant. It lasted a week. On the glorious day my beautiful boy entered this world at his first breath he went into a full blown panic attack. I knew something was different, even at the hospital. He didn't want to press his face into my breast as he nursed. He tried to get away. By a year old I thought Jack was deaf. He didn't respond to his name. I remember banging a pan behind him. Nothing. Not even a flinch. He was a very quiet child. He never cooed. I tried not to compare him to his sister who talked all the time. He never called me momma. At two years old we heard the word Autism. We were terrified. All we knew about it was just horrible. We cried. We felt helpless. We mourned the child we would never have. He received all sorts of therapy, still does but None of it helps much. We decided to embrace Jack for who HE is, not what society says he should be. He is MY GREATEST BLESSING. I have learned more from him than I will ever be able to teach him. I now know unconditional LOVE and the meaning of patience. We love this boy with all our hearts. He will be mine forever!!!

Anonymous
Thompsons Station, TN

Autism Angel

It all began after her 18 month needles when our lives quickly turned around. This sweet girl went from meeting all mile stones, waving, speaking words, walking, eye contact to severe fit of pain, stumbling, crawling, non verbal, no eye contact and just being a stranger in her own world with no connection to the world. After several appt's of them telling me it was a virus, a flu... I kept on being persistent saying something happened what is going on with my angel. Everyone who knew her well knew that she was just not the same, something dramatic did in fact happen to her. After months of testing and heartaches of not getting a solid answer she was finally diagnosed with Autism. She has now been getting one on one therapy, 20 hours a week since May 2013 (6 months) and she is starting to be the sweet angel she once was, her eye contact is back, her waving, pointing, and we are hearing words now. When you speak to her now she understands. She is still behind and most likely will always be but because my family and I knew there was something wrong we never gave up and she is now going to receive therapy till she starts kindergarden at 5 years old. We are grateful to have such a happy girl, but you just don't know what can happen to your child from one day to the next, be thankful and never take anything for granted. She is a tough one and will fight this till the end. Mommy, daddy and brother too! We love you Chloe Bella xoxoxo

Isabelle Bulmer
Moncton, Canada

Jennabug

Jenna's story is a very long and winding road. Jenna was born October 2, 2003 at 41 weeks gestation. I was induced due to lack of amnio and was then in labor for 2 days after they noticed my water was extremely low. From day one i knew something was special about my little girl. She was very bright eyed and attentive yet was not making all her milestones. Walking was delayed and talking followed in same path. I began to question Jenna's doctor being i have worked with many Special children i immediately knew. Her doctor at the time refused to listen to me and this was very frustrating to me. When Jenna was 3 years old my father and step mother had a son, Jenna and Myself tagged along to one of his doctor appointments in which we met Dr. Narayen who immediately without being her doctor pulled me into her office and asked me if Jenna had ever been tested for Autism. I at that point changed my pediatrician and so began the journey. Jenna got a appointment at Kennedy Kreiger in June of 2007, after a 7 hour day there the reports came back with Jenna having ADHD, Mild language delay, and the "characteristics" of Autism. They said because my daughter would give you eye contact and had a slightly friendly manner she was not fitting into the scales of ASD. Jenna began seeing a therapist the following month where a psychologist was present who told me Jenna did in fact have ASD. Jenna has been hospitalized twice over the years, goes to a special school for behavior issues and has been bounced back and forth now against my will since. March of this year someone FINALLY listened to me and i got her into Mt. Washington's ped. Hospital, who did the same tests KK had done. Finally the tests come back as to Jenna has in fact all this time had ASD and can now get the proper help i so needed for the past 10 years. I will continue to fight for my Bug.

Jessica Smith
Glen Burnie, MD

My little sister

When i was 16 months old, my beautiful little sister came into my life. From that moment on we were already the best of friends. Once she was 2 years old she was diagnosed with Autism. i didn't understand. But as we grew older and i understood more, i saw that life began to be more difficult for her. She had learned how to speak by the age of 6 and children around our street began bully her, they called her names and told her it was wrong for her to be different. It was heartbreaking because she wasn't able to understand and stand up for herself. Years went by but i never forgot about the harsh words that were said about her. I've always been there to protect her from that day and i will be her best friend until the day i die. I know she will have to go someday because as she's developed into her late teenage years the behavior has worsened. I help my mum the best i can but we know that she'll have to go somewhere she is happy. Some people see it as being too weak to look after her, but we want her in a place where she can be herself. She has always loved animals and because of Autism my dream is to own a place where they can live, somewhere private so they can be whoever they want to be. Behind the house will be a farm where they can help look after all of the animals (horses and dogs are her favorite). She proves that in life being different may matter to some, but when you have people there who will love you every step of the way, autism will never define you. I will always love her.

Jas
London, United Kingdom

Meet Albert

When Albert was born he was perfect! He made all of his milestones at the appropriate time. He even started to speak early. But when his speech became slurry at four we had him tested for an IEP. They diagnosed him with speech and language delay, but they asked me to complete a GARS assessment. I couldn't believe that they thought he might have autism! I mean he never lined up his toys, or played with the wheels of his toys and he never banged his head. He did however spend hour creating perfect Lincoln log villages and his conversations were always one sided. He is an August baby and we opted to have him repeat preschool with a private school, with group speech therapy through his elementary school and two hours of private speech therapy through our private insurance every week. When he started kindergarten he was almost six and we were blessed with the best kindergarten teacher a who had lots of experience with autism. She requested and evaluation to change his IEP. We then made an appointment with a developmental specialist and after driving over two hundred miles he diagnosed him in less than five minutes with autism. He wanted to put him on several different types of medicine and made a very rude statement about having him placed in a mainstream classroom, that he needed a classic autistic classroom. He was excelling in his class and his teacher disagreed so we waited nine months for a second opinion. Thank God for second opinions! His new doctor disagreed and stated he was high functioning that he needs to be mainstreamed. He still struggles socially but he has some really great friends and last week he was accepted into the Elementary Honor Society with fourteen other students. He has earned all A's again this semester with no special education considerations.

Jill Diaz
Sierra Vista, AZ

Nikki's Story

Just after Nikki turned two, and driven by emotional frustration, we made yet another visit to a so called specialist. This was after several doctors visits that were recommended and characterized as the best in the business. This doctor looked in the eyes and said: your daughter is Autistic”

Those words went through my wife and I like a sharp knife to the mid section.We were parents in our early 30’s and had little to no knowledge of what Autism was. I was unable to have any clear thoughts at that time, however I did know that what the doctor had just said was in fact... a life sentence.

During the last 16 plus years, we have learned more about love, appreciation and the things that really matter in life, than we could have every imagined. Nikki is an amazing human being who teaches very strong lesions each and every day.There is no sarcasm, exaggeration, substitution or lies. Everything is what it is, and what a wonder influence and lesson that has been for our family.

We as a family have no illusions and do not labor in the belief of a miracle cure. My wife and I know it is a very difficult road ahead. Every day brings new challenges in the world of Autism. Nikki will most likely live with us for the rest of our lives. Will never have a real job, nor will she ever be able to live on her own. We know that the stares and the embarrassment over her peculiar behavior in public places will be there forever. We know that every public venture or event could have the potential for unknown adventure. However we also know that having Nikki has been a gift that far exceeds anything that we could have

Chris Collins
Little Silver, NJ

Matthew

My little brother, Matthew is 18 years old. He got diagnosed with Aspergers Syndrome after receiving the MMR jabs when he was a child. He's like any regular teenage boy. He stays in his room, playing his X-box and loves all animals. He gets emotional easy and struggles with social circumstances like making eye contact or eating with people. He'll say himself he hasn't got friends but that I am his best friend and that makes me feel so blessed.

When he first started primary school, he was the only autistic child the school had so when Matthew used to go explore and never sit still, they just thought he was a bad child. Matthew had a hard time in high school and sadly it came to the point when after I left school, we had to remove him. He's now in a school dedicated to autism and he's doing amazingly.

When I was younger, I used to wish that my little brother wasnt so different as it was quite hard for me to deal with a younger brother who was getting bullied every day and having to watch. I was young and didn't understand. But now, I would never even imagine changing my brother for the world. I don't know what I'd do without our daily cuddles or phone calls while I'm at university.

Matthew is the most amazing young man. Caring, kind, funny, intelligent and talented. There's not a day that goes by that I don't think of him and how proud I am of him. He's my best friend and I can't wait to see how he carries on to grow into the great man I know he'll be. He's my little twerp of a brother and I just want everyone to know how amazing he truly is and how proud I am of him. He's gone through a lot and continues to keep going. I love you, Matt.

Jess
Carlisle, United Kingdom