Below are real life stories, told by very brave parents and carers. Who wanted to share their experiences.
If you’d be willing to share your story, please contact us or email us at firstname.lastname@example.org.
Stories can be whole life stories or just a particular incident. Stories can be of struggle or heartwarming stories. And should be between 400 – 700 words.
I will never forget the moment my daughter Maya was placed into my arms for the first time. When those beautiful brown eyes peered up at me, my life changed forever.
Maya was born on a Thursday and my husband Rob and I brought her home from the hospital Sunday. We received “the call” Monday. “The call” for families of special needs children may actually be a phone call or maybe it is a face to face with the doctor. Some families find out before their child is born, right at birth, or maybe even years later. “The call” I received is engrained in my memory.
When I answered my phone, the voice announced they were from the hospital and calling about Maya’s newborn prescreening. They proceeded to tell me that Maya had an irregular screening and may have a metabolic disorder. We were instructed to take her straight to the University of Illinois (United States) the next morning for further testing. If Maya was lethargic, vomiting, or unresponsive we should bring her straight to the emergency room.
Trying to respond to the person on the phone was nearly impossible. My body fell to the ground while uncontrollable tears poured out. I cradled my baby wondering if she was lethargic or sleepy, vomiting or spitting up, and if she was responding properly. It was the longest night of my life.
The next day I watched a genetic team take blood samples, urine samples, and run a variety of tests on my newborn. My husband and I sat with a counselor who asked 101 questions and gave us the worse case scenario.
After hours of tests we left with the diagnosis of Propionic Acidemia and were told “not to Google it”. The first thing I did when we got home was Google it. I saw words like organic acid disorder, serious health problems, heart abnormalities, seizure, and coma. When the words “possible death” scrolled across my screen, I closed my computer.
Fortunately, the only words from the Google list that apply to Maya are ‘organic acid disorder’. Today she is a healthy five year old that graduated from preschool, goes to science class and gymnastics through the park district, and loves to boss around her little brother Christian.
Having a sibling for Maya was a difficult decision. Since Propionic Acidemia is a genetic disorder we needed to do research. After extensive genetic testing and mixed answers on the odds of having another child with Propionic Acidemia, we took our chances and had Christian.
Just when I thought my heart could not possibly have room for any more love, I realized how much love a heart could truly hold. Christian is a handsome, energetic, two year old who also has Propionic Acidemia. We were more prepared for the birth of Christian and the possibility of him also having Propionic Acidemia. We had a crisis management team in place during the birth and knew within 48 hours our diagnosis.
Both Maya and Christian take specialized formulas and medications. They both receive early interventions, and they both have too many doctor’s appointments. Blood draws are horrendous and medical appointments can be difficult, but none of this defines them. They are loving, caring, and have hearts of gold. They respect others, accept everyone, and love unconditionally. Like every other little one, they both have curious and inquisitive personalities.
This inquisitive nature combined with my children’s condition is what inspired me to create a company called Someone Special: Uniquely Personalized Books.
Kids are curious by nature. They naturally accept everyone’s uniqueness and embrace differences, but they also question it. Because Maya’s condition revolves around her inability to process proteins, common five year old questions from her peers are as simple as, “Why can’t Maya eat pizza? Why does she have to drink formula? Why is she taking medicine; is she sick?” None of these questions are meant to be harmful. They are just curious kids. Children with other disabilities may be faced with questions such as, “Why is she in a wheelchair? How come he doesn’t talk? Why does she need those crutches? How come he acts like that? What are those headphones for?”
To assist with the questions that might be asked about my daughter, I created a personalized picture book for her to show her classmates. It shared how she likes a lot of the same things as everyone else, but we also need to watch what foods she eats. When I told my best friend and teaching partner Kate Ryan about Maya’s book, she knew we could help millions of children the same way I helped Maya. Someone Special: Uniquely Personalized Books was born.
We create personalized children’s book for children with special needs. These unique books are not only personalized with the child’s name and birth date, but also include their hobbies, interests, condition and some recommendations that are all personalized by the parent. The parent is also able to choose from a series of illustrations and include a personal photo of their child.
The final page of the book is left blank for the parent to include any additional information.
We also have plans for personalized social stories and books for children without special needs to teach acceptance, kindness, and awareness. For updated information on our books please visit Someone Special Uniquely Personalized Books Facebook page or our website at www.someonespecialbooks.com. Questions or comments can be emailed to HeatherMcCarthy@SomeoneSpecialBooks.com
By Heather McCarthy, Illinois, United States.
In January of this year, fed up with the lack of understanding and support for higher functioning autistic children, my husband and I pulled our son Daniel, out of public school.
We are trying to raise money for Daniel to attend Accommodated Learning Academy here in Grapevine Texas. ALA is a small private school for students who have learning differences that put them at odds with the public school system.
Daniel was diagnosed (privately, not through the school) with Pervasive Development Disorder, along with anxiety and depression when he was in first grade. During the diagnostic process, we also discovered Daniel had an IQ of 130! It has been his combination of giftedness and lack of social understanding that has caused him and us such heartache.
For the first three years of school, Daniel did well in school and always tested into the gifted class. Unfortunately, he was constantly in trouble for his lack of social skills. He would invade other children’s personal space, continue with annoying and aggravating actions when other children pleaded with him to stop and possibly the most frustrating behavior was his inability to read his peers. If someone in his class was upset with Daniel, he could not read their nonverbal cues; he would keep pushing until the situation escalated.
This issue resulted in many trips to the principal’s office and even got Daniel slapped in the face in fourth grade, not to mention the fact that Daniel has always been an outcast at school.
Daniel’s intelligence has made him painfully aware of his lack of friends and by the end of second grade he began turning his frustration over failing friendships toward himself. He voiced opinions about himself no mother or father would ever want to hear from their child.
It was not until 4th grade that the school actually go involved and deemed it necessary to put Daniel through their diagnostic process. My husband and I naively though it was a good thing, a form of protection for our son who was always in trouble and a door to services we could not otherwise obtain. Sadly that has not been the case. The school came back with an offensive label: Emotionally Disturbed, despite the fact that we had given them our private diagnosis.
We spent fourth and half of fifth grade trying to get Daniel help in school but honestly are given only lip service. Daniel’s Individual Education Plan consists of little more than isolating him when he “acts up”. This has done so much more harm than good. This sweet (albeit sometimes very hard to get along with)boy, who already feels shunned and has no friends is swept away to the corner of an empty classroom where the isolation only confirms his darkest thoughts about himself: I am unlikable, I am unworthy.
My biggest fear is that this rejection will take away that spark, that gift inside of my son and I, nor the world, will see what Daniel has to offer.
By Kelly Dickinson, Grapevine, Texas, USA.
Thomas was born at 30 weeks and it was very touch and go if he would survive or not. After we eventually got him home, he seemed to be fine, and for the first twelve months we thought he was developing normally.
We didn’t notice anything was wrong until Thomas was 3 years old when he started banging his head on the floor. He seemed to be doing this quite often and I was really concerned. Thomas has an older sister and she had never done anything like that. Thomas went to day care whilst my partner and I worked, so we asked the ladies at his day care if they had any concerns but they said everything seemed fine.
Thomas is now 5 years old and has just started school. He no longer bangs his head, but he has become very violent at times and often throws huge tantrums. Just the other day we were at our local shops and when Thomas was told he couldn’t have a toy he saw, he started screaming at the top his lungs and trying to pull everything off the shelves in the shop.
Thomas regularly gets very angry and will hit out at anyone and anything. My biggest fear is that I don’t know what’s going to happen when he is bigger. How will I be able to deal with it when he is a teenager and is a lot bigger and stronger and starts hitting me. I love Thomas, but I am so worried that I’m not going to be able to cope. We are being referred to the pediatrician. But i don’t want to put him on medication, so now we are looking at different foods he eats and other ways to calm him down.
I feel so sad for him, because when he’s not angry he is such a lovely boy, but then it’s like he becomes possessed, like my lovely little boy has been taken over by something else. I think we have a long way to go, but I really hope we can find a way of helping Thomas.
By Kimberly Bishop, Frankston, Victoria, Australia.
My son brian was born at 40 week’s. We had the perfect baby he would feed well, sleep well, make baby noises and smile at 2 month’s old.
At twelve day’s old Brian had Meningitis Type B. He had to be rushed to hospital after having two seizures at home, when we got there the rash started appear. The doctors then had to do a Lumbar Puncture and he was placed on a heart monitor and pumped with strong anti-biotics. Me and his dad were told that the following 24 hour’s would be critical to see if Brian was going to survive. To us the doctors were saying ‘he has 24 hours to live’. It was absolutely heartbreaking.
Brian put up a fight and came through, and after almost two week’s we were allowed to take him home.
But this left him having seizures every week. Luckily Brian was strong and continued to meet all his milestones. At 18 month’s old he was given the MMR vaccine and within a week or so, he went from being the baby that slept, walked, ate well etc. To a screaming, head banging, bighting and fighting child. He would bash his head against the wall over and over again and didn’t seem to feel anything. We then went and spoke to our health visitor who told us ”it’s normal” for a child to bash their head lot’s of times.
After being told that Brian’s new behaviour was perfectly normal, we continued to struggle without any help or support. He would fight with his sister, he would run away from us and continually flapped his hands, but we were still told that this was all normal.
When he started primary school he would behave the same there.
He was constantly fighting with other children, still hand flapping and he would often run out of the class as he could not cope. Again we sought professional advice and again we were told this was normal. We felt like the school were failing him as we weren’t getting the support we needed from them either. So eventually we moved him schools.
At his new school Brian continued with the same behaviour but now it had escalated even further. He was even more violent, he would escape from the school, he couldn’t cope at all with being in the classroom, would cover his ears and he was hand flapping more than ever. Rather than find away to help Brian, and us, the school simply kept excluding him. In all he was excluded nine times. They did however help us get him seen at our local child development centre and the doctor there explained that this could be Autisum, ADHD, sleep problems, sensory problems….
Again, they tried having him back at school for just 45 minutes a day, but that still didn’t work. He still couldn’t cope and would run about the school, he even locked two teachers in a room. At this point he was excluded again. Again they said he could come back but within a week he tried to attack the headteacher with a hockey stick after holding four teachers in a room. This resulted in him being permanently excluded.
At home he would fight, he wouldn’t sleep at all, he seemed to just have loads of energy. Brian can go up to three days with no sleep at all. He gets very violent hand flapping (whilst making a noise with his mouth), he has no sense of danger at all and will regularly run straight into the road. Brian constantly fights me, his sister and his brother. If we go to the shop he can’t cope as he can hear all the noises like till’s beeping, the freezers running and people talking, and all of this is made worse by people tutting at us or making silly comments like ‘look at that mum, she can’t cope with her naughty child’. On top of this, Brian now self harms as well, he will pull his own hair, punch himself or he will dig his nails in to his skin.
Brian was out of school for almost three months but he is now at our local special school he is still under the doctor at the child development centre and CAMHS and we now have an official diagnosis of Autism, ADHD, sleep issues and sensory problems. We have a long way to go but i’ll never stop fighting to get him all the help he needs. No matter how hard my days are with brian i will not give up on him.
By Leanne Horton, Cannock, England.
My pregnancy with my daughter was just like any other with morning sickness and cravings. It all changed at 36 weeks pregnant. I went for a routine check-up with my private obstetrician who did a quick ultrasound. She picked up that the baby’s head was already at 40 weeks and it looked like it had excess fluid on her brain.
I was sent immediately back to the ultrasound clinic for a more detailed scan. At this point they completed an amniocentesis (which had no findings), sat my husband and I down explaining that there was an issue with her brain. We were told a range of outcomes from hydrocephalus to the possible death of our baby during birth due to the pressure on the brain. I was closely monitored and at 38 weeks I went in for a planned caesarean with a number of specialists on hand for my baby.
I gave birth to a little girl, Imogen.
Imogen came out looking normal for hydrocephalus and had high Apgar scores. She was sent straight to intensive care for further testing. Later that evening I was surprised when she was returned to my room but this was short lived when she stopped breathing and was placed back in NICU for 8 days. The size of her head was too big for her neck to hold up, which kept cutting off her breathing so she was placed in a special position and monitored. They then did an MRI on her brain. They found she had a number of brain conditions. She has hydrocephalus and needed a shunt to release the blocked fluid on the brain, Corpus callosum hypoplasia with ventriculomegaly, Plagiocephaly (left), Colpocephaly, Hypoplasia of the septum pellucidum and the cerebellar vermis, plus Polymicrogyria.
At nine days old we were discharged.
She wouldn’t feed from me which I later found was due to her low muscle tone so I expressed as long as I could. At 8 weeks old she was sent in for brain surgery to have a VP shunt to drain the fluid off her brain into her stomach. This malfunctioned and she went back in again at 12 weeks of age. Time progressed and we started to notice she wasn’t hitting her milestones.
At about 4 months old I was at my grandparents’ house and she had what I thought all along was bad reflux so contacted her paediatrician. I was told she was having a seizure and to call the ambulance immediately.
Imogen then had an EEG which showed she had epilepsy, so her paediatrician recommended genetic testing to see if there was a reason behind all these issues. She was found to have a 6q25.3 quarter deletion (missing chromosome 6q25.3, 26 & 27). Her chromosome abnormality is completely spontaneous, not inherited from either of us & they estimate that only 40 people in the world have this genetic condition but each has different health issues as a result. No two are the same. The geneticists really couldn’t tell us anything about her condition or prediction on life or health. We walked out with a cause but no idea to go from there.
When Imogen was about 6 months her epilepsy got really bad, up to 50 seizures a day. It caused her to stop breathing on numerous occasions and we spent nearly every fortnight at the hospital. We had a few horrible few years and nearly lost her many times. Once the correct epilepsy medication combination was found, Imogen started to develop.
On her first birthday she began crawling and babbling, and about 20 months old when she took her first steps. She had difficulty chewing and swallowing until about four years of age. This was due to a high palate and oral sensitivities. She has some dysmorphic characteristics, a sacral dimple. Her eyes have small nerve endings, esotropia and has strabismus. The parts of the gene that Imogen is missing is also related to the immune system so Imogen has a very low Immunity. Recent testing due to issues with her legs and balance have the doctors also believing that she may have ataxic cerebral palsy but we are still continuing down that path.
Imogen is classed in the severe developmental disability range. She is classed as severely delayed for cognitive, language and motor skills. At 4 years of age she was diagnosed as Autistic. She also has sensory modulation disorder– sensory defensiveness.
On her fifth birthday Imogen began at a special needs school and has since blossomed. At 6 she had another shunt malfunction which required another surgery and has been in and out of hospital for seizures and falls due to issues with her legs.
Now at 7 we can’t get Imogen to stop talking, she has an amazing memory, loves numbers, letters and signing, especially The Wiggles. She is such a bubbly child and even wakes from a seizure smiling and asking for tickles. It has been a really hard road but things are improving as we learn more about her. I also have a 4 year old son with Autism and apraxia, but that’s another story!
By Keira Todd, The Ponds, NSW, Australia.