Written by my daughter, Hannah, I am in awe and inspired by this<3
The room was filled with people. And the room was huge, so it was a lot of people. Hundreds of us were crammed in the black box room that had a stage and big screens in one corner. Lights in various colors flared. Upbeat music played. The crowd of people became a sea of heads and arms under the clouds of light and music.
It was my first time visiting this church. My best friend invited my husband and I along. He and I had been on an unfortunate streak of non-attendance, not because we didn’t think church was something we should do, and not because we had given up our faith or anything. The reason was simple: we hadn’t found a good church near school. The reason was also complicated: my heart was numb and suspicious.
Around the time Alex and I got married, the church I had grown…
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Every April 2, the world celebrates International Autism Awareness Day. Before I had a child with autism, I used to think it was an over-diagnosed disorder caused by immunizations. However, once our youngest son, who we never immunized, was diagnosed with autism, I began to walk in a different pair of shoes.
In the years since my son’s diagnosis, I’ve done a lot of research. And while I do think immunizations can exacerbate autistic symptoms in children, I now know some more facts about the prevalence of this little-understood condition:
- Autism affects 1 in 68 children.
- Autism prevalence figures are growing, becoming one of the fastest growing developmental disorders in the US.
- Autism costs a family $60,000 a year on average.
- Boys are nearly five times more likely than girls to be on the autistic spectrum.
- There is no medical detection or cure. Research by Autism Speaks
Since we discovered our now thirteen-year-old son’s autism, our family has worked hard to manage and improve the various impacts that autism has. Our son has been in some form of therapy since he was three to four years old. We’ve had some extremely grueling years of day to day therapy at home, including vision therapy, occupational therapy, speech therapy, and vestibular therapy. We have worked a lot on large and small motor skills through the years. Doing “simple” things like tying shoes or using scissors are not easy for him, but he can do it. He gets overwhelmed very quickly, and moving from one activity to another is extremely hard for him.
All of our children have had food allergies and sensitivities and with the research that has been done in relationship to gluten intolerance and Autism, we just felt it was wise to keep him on a gluten-free diet. We have had extensive tests done through the years regarding the vitamins and minerals he needs as well as pre- and probiotics to keep his system regular. We also found that a very low dose of a stimulant medication helps to support his ADHD. All of these interventions, along with physical activity and heavy structure, have proved to support all over well being and reduce self-injurious behavior.
Behavioral therapy has been an ongoing challenge for all of us. Tools that my husband and I use as parents have to change several times in a course of a day or a week. What worked last week like a charm will not necessarily work today. Obviously, this can lead to strain in our own relationship as we work to adequately parent this child. Nothing has been more difficult in our marriage. We have also attended family therapy, as the tension on the typical siblings have proved to be extremely stressful as well. We have learned ways to communicate better, using common terminology and allowing everyone to share their feelings during meals or family meeting times.
According to Dr. Robert Naseef, Autism in itself doesn’t necessarily cause divorce, but living with a child who has challenges brings out all the weakness in your marriage. We have both wanted to leave the situation out of sheer frustration and exhaustion, and there was a time in our marriage when we were ready to call it quits. In our effort to rebuild our relationship, we knew our number one objective had to be parenting this child with as much unity as humanly possible. We also realize that we hyper focus on the autistic child, by shear virtue of his particular issues. We work very hard at trying to have a positive, strengths oriented atmosphere. We have a black board in our dining room and we will often write positive quotes, mantras or scriptures to encourage and inspire each other.
Socially, our son has a great desire to have friendships, which can be unusual for someone on the autistic spectrum. Unfortunately, his desire for companionship is not often reciprocated by his peers. Because he has remained socially immature, the friends he had when he was younger have moved on to other friendships. We have, however, found a few families who invite our son for play dates or sleepovers, and it is much-needed respite for all of us, including him—he gets tired of us too!
Our son is very bright and extremely creative. He likes to write movie scripts and draw cartoons. He likes gaming, Minecraft and Legos, riding his bike with us on the bike trails, taking hikes and visiting the lakes and creeks in our area.
We have tried our hand at homeschooling and private school, but we have landed at our local public school that has more access to learning supports and accommodations. When we first attended the orientation for high school, we sat down and created a short biography with our son with his picture on it. It reminded teachers that our son did have an IEP and included information about his likes, interests, strengths and vulnerabilities. We gave one to each teacher as we entered the class and they all said that really helped them get to know our son much faster than they would have with out it. We have contacted every teacher through email and keep in touch asking them to notify us as soon as something transpires in their class as opposed to waiting for a slip from the school, which can take up to a few weeks. The opportunity for bullying at school is always present and our son has had his run-ins with it. We call his school case worker and principal right away at the first sign. Our son has not always acted in sound judgement in his behavior and it is met with swift removal of gaming that must be earned back. Teachers, counselors and administrators appreciate our communication and participation in our son’s education and we all have the sense that we are supporting each other to meet the goal of success for our son.
Through the years, we have tried several group sports, some successful and some not such a great idea. He had the most success with flag football this last fall and he just started our school’s track program a few weeks ago! It is his first ever group sport where he has had a strenuous practice every day after school! It is a personal best sport as well as team effort, and he definitely has exceeded his ability since last year at this time, just by showing up for practice. Our son also likes to wrestle and roughhouse with us. I started doing yoga three years ago and working out at the YMCA just so I could be strong enough to handle my fast-growing son. Every day takes an immense amount of mental and physical stamina, and it is all beyond our human capacity.
When I gave birth, we found out that I had a ruptured uterus and that it had been so for some time. He and I really should have died. His name means “gift,” and on our hardest days we choose to remember that. We have spent the last thirteen years trying to readjust and relearn everything we did with our first three, “typical” children. All the while, we keep in mind that this child is exactly who he was meant to be, and as messy as it can be some days, we are all learning and growing together.
Every day is like the movie Groundhog Day here; we get up each morning and start the process all over again. I would like to say that we have no doubt he will grow up to be a self-sufficient human being doing amazing things in the world, but I would be lying to say I was confident. I know he is capable of greatness and deep down that is who he is, but we have so many days that we struggle and feel inadequate.
As parents, we give all the tools, love, and encouragement to our children we can give, and they make their own choices. So we continue to pray, move forward, try new things, grow one minute and one day at a time, and celebrate all the little victories along the way<3
I have been on a journey the last few years. I had been calling it a healing journey, but Kelly Flanagan in his book, Lovable, has challenged me to call it being wholed. I resonate with that because I often pray Shalom over myself and others. The Hebrew word, Shalom, is often linked to the word peace but it is so much more than that, it is wholeness, integrity, completeness, perfection.
I am not writing from an attitude of wholeness today. I feel anything but whole, complete or perfect. But it does not really matter how I feel about it! My true self is whole, complete, full of integrity and perfect!
“In the first act of life, we begin to overcome the disunity at the center of our self, which was wrought by our shame. We embrace the confused and lost little one in us, we return to our worthy and good-enough soul, and we come back into union with the divine spark underneath our underneath. We coalesce around our true self.” KF
I started painting with my daughter during the time my husband and I were separated. We have continued this activity together and it has been wholing. I painted this the other evening. I have been intensely wrestling with God concerning my purpose and my passion. It feels like there is nothing left to squeeze out of me, nothing else to burn, waiting for the “who I am on the inside and what I do on the outside to become one”.
The separateness we feel is truly an illusion and I am easily convinced by it when I see how I behave sometimes or when I look at my circumstances. But the truth is, I am whole and complete and perfect. I have a life full of meaning that is repeatedly being pulled free from shame and into my divine purpose. That is my true self.
Did you know?
- Autism now affects 1 in 68 children…1 in 42 boys.
Autism prevalence figures are growing.
- It is one of the fastest growing developmental disorders in the US.
- Autism costs a family $60,000 a year on average.
- Boys are nearly 5 times more likely than girls to be on the autistic spectrum.
- There is no medical detection or cure.
Before I had a child with Autism, I used to think that Autism was an over diagnosed disorder and it was caused by immunizations. After studying much research, I think immunizations can exacerbate the autistic symptoms in children, but our son never had immunizations ,so it is not the only cause.
As far as Autism being over diagnosed, I walk in a different pair of shoes and no longer see it that way any more.
Our son has been in some form of therapy since he was 4. There were some extremely grueling years of day in and day out therapy at home including; vision therapy, occupational therapy, speech therapy and vestibular therapy. We have worked a lot on large and small motor skills through the years. Doing “simple” things like tying shoes or using scissors are not easy for him, but he can do it!! He gets overwhelmed very quickly and moving from one activity to another is extremely hard for him ( and all of us who are in a hurry;-)
Behavioral therapy has been an on going challenge for all of us. “Tools,” that we use as parents, have to change several times in a course of a day or a week. What worked last week like a charm, will not necessarily work today in the same scenario. Nothing has been more difficult in our marriage. It is not that Autism causes divorce, it is just that if you live with a child that has challenges, it brings out all the weakness in your marriage. We have both wanted to leave the situation out of sheer frustration and exhaustion, and we had a time when we were ready to call it quits. In our effort to rebuild our marriage, we knew a number one target had to be parenting this child in as much unity as humanly possible.
Our son has a great desire to have friendships, which can be unusual for someone on the Autistic spectrum, but it is not often reciprocated. And as our son has stayed immature socially, his younger “typical” friends have moved on to other friendships. We have, however, found a few home schooling families who invite our son for play days or sleep overs! It is must needed respite for all of us…he gets tired of us too!!
Our son is very bright and extremely creative! He likes to write movie scripts and draw cartoons. He likes to play Mine craft and play with Legos. He likes to ride his bike with us on the bike trails. Of course he likes video games, but these are used as incentives and rewards for appropriate behavior. Through the years, we have tried several group sports, some successful and some not such a great idea! He had the most success with flag football and we are trying track this spring! He likes to wrestle and rough house with us. I started doing yoga three years ago and working out at the Y, just so I could be strong enough to handle my fast growing son! Every day takes an immense amount of mental and physical stamina and it is all beyond our human capacity.
When I gave birth, we found out that I had a ruptured uterus and that it had been so for some time! He and I really very easily could have/ should have died. His name means gift, and on our hardest days we remember that.
We have spent the last 13 years trying to re adjust and re learn everything we did with our first three “typical” children. All the while, we keep in mind, he is exactly who he was meant to be! Every day is ground hog day here!! We get up and start the process all over again. I would like to say that “we have no doubt that he will grow up to be a self sufficient human being doing amazing things in the world”….but I would be lying! I know he is capable of greatness and deep down that is who he is, but we have so many days that we struggle and feel inadequate. He is like all of our other children in this respect; we give all the tools, love, and encouragement we can give and he will make his own choices. Until then, we pray, we move forward, we learn and grow one minute and one day at a time<3