There was a very well written blog/article written on the Huffington Post, "Maria Lin: 7 Things You Don't Know About a Special Needs Parent." In the article, she wrote from the heart about her list of things that people don't generally know about her life as a parent to a special needs child. It was a very inspiring and insightful view of what life can be like. Her article inspired me to write my own list.
There are always assumed ideas that people have of what it is like to raise an autistic child. I don't speak for ALL parents of autistic children. I can only write from my own experiences. As the saying goes, if you have met 1 person with autism then you have met only 1 autistic person. The same can be said of the family members who care for and live with that autistic person. We are all individuals and have varied perspectives on what this journey called autism is like. It affects each person and family differently. This is my perspective.
1. I am a Momma. I am not just the caretaker of the special needs child. He is my son. He is a child that I love deeply. I feel all of the typical emotions that a mother has for her child. I have hopes and dreams for him just as any mother has for her children. When you make comments about the lack of future my son may have, it hurts me deeply.
2. Don't assume he is undisciplined. If Pookie is in a situation that causes him extreme stress, he reacts to it. This may or may not include: stimming (repetitive movements that are a self-calming action that helps him cope), screaming/crying, biting himself, hitting himself in the head, or showing signs of absolute terror. This is NOT a child having a tantrum but a child having a very frightening overload of stimuli. Each and every time he goes to a new place or is forced into places that have stimuli overload "triggers" he will react to it. Some of Pookie's triggers are: an echo, blinking fluorescent lights, crowds, PA systems in a building, and loud noises. There are many triggers, but those are the ones that nearly always cause a reaction. One note about fluorescent lights: some children with autism or other neurological problems can even have a severe seizure just from being in that type of lighting. Autism is a neurological disorder within the brain. It is not something that a parent can make go away through discipline.
3. My son has emotions. He is filled with joy. Little Man, who I call "Pookie", laughs often. He loves to play and giggle. Just because he has the more severe form of autism called Autism Disorder (aka Classic Autism or Kanner's Syndrome) doesn't mean that he doesn't feel or show emotions. He is not a robot without feelings. He often will react to the stimuli of the emotions around him. In example, he laughs when others laugh or will get weepy if someone else is upset. He is very empathic in that sense.
4. My son has intelligence. Just because he is non-verbal does not mean that he is lacking intelligence. When he finds ways to communicate, he shows the level of his intelligence. Being non-verbal and not having a broad vocabulary in the use of sign language or PECS communication system yet (he is 4 yrs old), he often is viewed as being of low intelligence. Don't call him "retarded". Even a genius like Albert Einstein would have looked less than intelligent if he had to speak to people who did not understand the language he spoke. Pookie has ways of communicating, but his ways are not ones that are generally understood by those who are not around him often. He is learning to communicate, but it takes time. Picture this - you speak can only English and are trying to speak to someone who only speaks Italian without the benefit of an interpreter. In a effort to communicate, you try to speak through sign language which the other person is trying to teach to you without the benefit of a common base for understanding. Get the idea? How intelligent would YOU appear in that situation?
5. I'm exhausted. I am a SAHM with 2 young children. We homeschool and live in a rural area. I also am working with Pookie on occupational therapy and teaching him to communicate in addition to preschooling him. I am not complaining. I love our lifestyle and being with the kids. The tired feeling comes from the emotional ups and downs that is common in families of special needs children. Pookie can be feeling fine and suddenly a stimuli will set off a meltdown. You simply learn to adjust to it and ease him through the situation in an effort to teach him self-calming skills.
6. He has a sister. Pookie is not the only young child in the home. While I welcome questions about Pookie, I often wonder if Little Miss sometimes feels ignored or left out by others' attention. She needs attention also. At 6 yrs old, she doesn't have the full understanding to know why people ask about her little brother but not her. We have our special times just her and I. We make a point of it. Whether it is working on her Little Keepers program, sharing an Afternoon Tea, or just having some girlie time painting her nails for her, I try to have time that is just for her alone. When others do talk to me about Pookie, I am always thrilled when Little Miss is brought into the discussion and made to feel special also. Not just for being a good big sister to her brother, but for her own individual personality & interests that have nothing to do with being a big sister to an autistic brother.
7. I get lonely. Having a special needs child can be one of the most isolating things a person can experience. It is isolating enough just living in a rural area. When you have a child with special needs, play dates at a park where Moms get together while their kids play just doesn't happen very often. I have never gone out for a cup of coffee with a friend. To do so requires a babysitter. The times that I do have someone watching the younger kids, I am out having to run errands. My husband is a truck driver and away from home most of the time. We talk often but it isn't the same as having time to sit, relax, and talk with someone. My eldest daughter's family lives here, but it isn't the same as having friends to talk to. Sometimes, you wish for a phone call. One of the things that helps is that I have a couple of people who I write letters back and forth with. All the same, there are times that I really wish I had a friend that I could talk to who really understood what autism is about and could relate to what it is like to have a child with autism.
8. I get discouraged at times. I am not always strong. I become very discouraged at the total lack of understanding even within the autism community. Nearly every time I hear people on autism support websites or in groups talk about their autistic kids, they are talking about Aspergers or PDD-NOS which are on the autism spectrum, but are NOT the same thing as the more severe Autism Disorder that Pookie has. I get sick and tired of having people tell me that change of diet or using supplements will cure him. While a good diet benefits anyone, it cannot change a neurological disorder in the brain. To say that changing his diet will make him become "less autistic" is not a truth. Some people would argue the point, but everyone is entitled to their opinion. I know my son. I know what we have tried. I know what works for him. If a change in diet makes a miraculous change in your child - God bless ya! But don't get on a rant and tell me that I am a bad mother for not "curing" my son's autism through diet & supplements.
9. I am a woman. I am more than a mother to an autistic child. I can talk about subjects other than just the autism. I homeschool Little Miss, I am a voracious reader when given a chance, I enjoy gardening, quilting, crocheting, and scrapbooking. I love doing photography. I have been known to play a guitar, organ, and drums as well as have written songs and poetry. I spent 26 years researching genealogies, teaching others how as well as researching others' genealogies as an income resource. I love the outdoors and being around water but the thought of being in a boat terrifies me. I was a truck driver. When my husband and I first got together, we drove as a team for a trucking company up until I was about 6 months pregnant with Little Miss. I grew up a trucker's kid and went to it as a job after my 1st marriage ended. I loved the job and having that time with my husband. I miss it still at times, but am happy to be home with the kids now.
10. I am a woman of faith. I converted and was baptized into a Christian faith 5 years ago after a time as a pagan. Even before the baptism, I always had faith in a Higher Power. I knew that there was more to life than what we see on the surface. I saw the majesty of the Lord's creation and His hand in what goes on around us long before my conversion. Now, I find peace in my faith. I see Pookie's autism as a perceived weakness (in the world's view) that can be turned into a strength that the Lord can use to show His grace and blessing. I know that the Lord has a purpose for Pookie as he is. The Lord may not of caused Pookie's autism, but the Lord is powerful enough to use it as a testimony of what a person can do in spite of being autistic with the Lord's blessing. The Lord can use any negative and turn in into a positive. I already am seeing in through Pookie. I see glimpses of the Lord's blessing in his life. Those precious moments when Pookie suddenly makes progress in his development. Yes, we go through the 3 steps forward, 1 step back routine in his development. Each time however, the progress made is more than before. Slow and steady, he is progressing. This doesn't mean that I am always strong and never have times of discouragement. I believe there is a reason why people have always attended their church. It is to fellowship and uplift each other. Unfortunately, I haven't found a church locally where I can take Pookie. Either the acoustics cause meltdowns or they don't know how to manage an autistic child. The church we attend when we are able to is a 90-mile drive (one way) from our home. With fuel costs, that is not something we can do very much.
Much of the above are things I would not normally blog about. That article inspired me however. It made me stop and think about the many misconceptions that people can have about the parent of a special needs child. We are more than the caretaker. We are individuals with hopes and dreams. We have many facets to our lives. Sadly, many only see the caretaker. We are so much more than that.