Since my son was diagnosed with Autism Spectrum Disorder in December 2003, my husband and I have learned a lot about our child's Autism. By the time our daughter received the same diagnosis in March 2006, we felt like experts in the field. In fact, that is what our children's specialists called us. We are living with Autism, twenty-four hours a day, seven days a week. Both my husband and I have sadly witnessed on several occasions how our children's autistic behavior is misjudged by other people due to their ignorance about Autism.
When people know our family's situation, they tend to ask questions in order to educate themselves about Autism. Others prefer to think that we use Autism in order to get services for our children's special needs and try to get sympathy out of it. Ignorance is the only reason for such a harsh judgement. In fact, if they knew what it is like to live with Autism, they would understand that we do not want pity or sympathy, but support and understanding. What is it really like to live with Autism? Let's find out!
- It is all about love! The first thing that you must understand is that when your child is first diagnosed with Autism, your child is still the same person that you have known up until then. The only difference is that now you understand more about his behavior, his reactions and his sensory issues. Of course, as time goes by, you will learn even more about your child. This child is the one that you welcomed into the world and that you have loved since conception. Love is the key.
- Patience is one of the main ingredients! Since we were informed about our children's Autism, we have learned patience in many ways. Discipline is different because it is difficult for your child to process and understand what is right and wrong. Finding ways to understand a non-verbal child's messages and his frustration when he's misunderstood can be a challenge and will most certainly require a lot of patience. We take the time to try different ideas, strategies and techniques to deal with our children's sensory issues (such as eating, elimination, clothing, and noise). Not to mention the patience needed to deal with family and friends that do not want to accept the diagnosis.
- Creativity is part of every day life! How do you stop a child from tearing up his diaper or hitting his head against the wall? How do you feed a child that has sensory issues with food? How do you make a child sleep and stay asleep when he wakes up 5 to 6 times a night, waking up everyone each time? How do you deal with safety issues when your child escapes through windows and screens? Creativity has been a part of our lives since day one.
- Fighting for your children's rights! The Government has services in place to support families living with Autism, but they do not offer them to you. In fact, you soon find out that you have to fight for your children's rights every step of the way, otherwise they will be short-changed. In fact, our non-verbal child was on a 2-year waiting list for speech therapy. A month prior to starting kindergarten, he was offered the services. When they realized that he was about to start school they determined he was unable to receive these services after all. School services were not a walk in the park either.
- Special services are part of your daily routine! You have to either meet the specialists all around town or welcome them into your home at their convenience. In our case, we dealt with both. And these services do not include all the medical appointments, testing and medication that you must deal with. How about a visit to the dentist with a child that deals with highly sensory issues? Any shot, blood test, MRI or dental work must be done while the child is restrained. It's either a fight to prevent injuries to both your child and the staff, or your child must go through general anaesthesia.
- Preventing nightmares in waiting rooms! In the Children's Hospital, I informed the receptionist that my child has Autism and to be patient if a meltdown occurs as a sign of distress, like my family doctor told me to do. Well, I came face to face with an impatient, uncaring and ignorant doctor that told me not to use my child's condition to obtain privileges. I was appalled!
One thing that I look for in a waiting room that will soothe my child is an aquarium or a television. These items help my children every time!
- Waiting in line! Nobody likes to wait in line, but, for us, it can be a nightmare as waiting creates more than frustration...our children become distressed and have meltdowns. At the fair, we look for no lines or short ones. In some cases, the local fair had a few hours opened to special needs children, which helped a lot. If my husband and I are both there at the same time, one goes in line while the other focuses the children's attention on something of interest.
- Medication is laced with creativity! One of the sensory issues that my son has is taste. He is also unable to swallow pills. As he suffered from seizures, we asked for syringes, medication in liquid form or diluting pills. Everything must be given quickly and orally through the syringe: seizure medication, Melatonin, Benefibre and vitamins.
- Teaching is not as easy as it looks! I am also a teacher and believe me when I say that teaching something new to my children, such as brushing their teeth, spitting the toothpaste in the sink or blowing their nose, is much harder than teaching subjects to a bunch of Grade 2 students. It takes, time, patience and a lot of imitation.
- Eating hot and sleeping are luxuries! Waiting is not a child with Autism's strong point. In fact, they can't wait! If you have a choice between sleeping, eating hot or dealing with a panic attack, a meltdown or your child becoming highly distressed, you will choose to assist them first even if it means being sleep deprived or eating cold. Having both parents involved can be a major help when it comes to getting things done.
- Sensory issues affect everyone's life! Washing new clothes before having your child wear them, cutting labels, selecting the "right" fabrics that will not make your child overwhelmed with how it feels to him is all part of living with Autism. Giving a haircut is a nightmare because, despite the fact that cutting hair doesn't hurt as hair is made of dead cells, children with Autism feel every cut and are often distressed by shavers and scissors. What if certain foods touch each other on a plate? A refrigerator's buzzing sound in a supermarket may create a meltdown in your child. The world is filled with sensations that are not always understood or welcomed by an autistic child.
- Questions can lead to confusion! Our daughter's Autism is not as severe as our son's. Her main issues are the size of food, noises, social interactions, routines and...questions. You see, she learns questions and their meaning by repetition. If you change the question, she may become distressed. She may misunderstand the person's intentions, hide or have a meltdown due to her confusion. Never take an autistic child's comprehension for granted.
- Safety is number one at all times! Children with Autism have no fear in a certain way. In our situation, our children do not see the danger in objects, the concept of strangers or understand that people can lie to them or want to harm them in any way. My son is a little escape artist that tries to sneak out of the house through windows. Both can jump in a pool without realizing they need to learn how to swim first or have an adult with them. My son was taught how to open locks in school as a puzzle game. Guess who tried to open the locks and escape out of the house because of it?
- Technology is helpful in many ways! Our son is technologically inclined! He figures out how things work quite easily, especially as far as the computer is concerned and he is only seven years old and doesn't know how to type. In his case, we have asked the school to work on his spelling and typing in order to help us communicate better with him (he is non-verbal). Sign language, pictures and actions are currently what we use with him.
- Medical issues affect everyone! My son has some seizure medication that his teacher aid must carry at all times in a fanny pack. We deal with vitamins as my son's feeding issues do not provide him with all that his body needs. He needs some Melatonin to sleep through the night as his body does not make enough of that hormone. Both my children have low muscle tone, which affects their gross and fine motor skills. My son needs some Benefibre and training for his bowel movements. Both children need diapering as their muscles are too weak to feel when they need to go, add some potty training for the last three years.
All these factors, issues and situations are part of our daily lives. Our love for our children provides us with the necessary creativity, patience and strength that we need in order to provide the best possible life for our children. It is not an easy task, but we wouldn't trade them for the world. If we could make a change, we would ask for their lives to be Autism free, like all loving parents would do. That being said, Autism is part of our lives, like it or not.
What we ask of people is to understand that we may be at loss with a seemingly easy situation such as feeding our children or that we may be tired following a difficult and sleep deprived night. Pity and sympathy has nothing to offer our family, but caring, friendship, love and support do a lot for us. If you know someone that lives with Autism, be there for them and discourage any labelling and misjudgments by others. Be a friend!