Our Personal Autism Awareness Journey

 

 

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

True Self

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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.

Autism Awareness!

shine a light on autism

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

 

 

 

Why Did Jesus Die?

jesus-against-sunset

 

The Bible says this of Jesus in Isaiah 53:3, A man of sorrows and acquainted with our grief.

I was studying what each of these words means and I was so inspired to share it with all who would listen!

Acquainted- To intimately know or experience. To be in union with to be inside.
Sorrow- Pain, mental anguish, sadness, to be plunged into grief, personal destitution and loss.
Grief- Sickness of mind and body, mental anguish, despair and depression, wounded by an enemy, trauma.

This means that when Jesus died on the cross, He took your/ my grief upon Himself. He has a personal history of your/ my grief! You/ me were made one with Jesus and He went to the cross as you/ as me! He took EVERY sorrow, trauma, torture and pain, on Himself.
Are you feeling lost? Are you feeling sad, depressed, alone, confused, hopeless? There is One Person who truly understands and took it all to make you/ me whole. The wounds of the past, even in the last minute, have been flooded with grace, hope and complete wholeness in Jesus Christ. He meets us where we are, just as we are.

Just as your GPS finds you a new route when you get off course, start from here and exchange your path for His, who has laid down His life to give you everything Today! He understands you intimately and He died and rose again to live through you/ me in the world.

I pray the Holy Spirit would strengthen and comfort you today! I pray He speaks His love, His strength, and His re seeing of your life through His eyes! I pray the Blessing of God, to be love over you! I pray that you walk in the way of Life from this day forward<3

 

Sorrow And Joy

IMG_3637Photo by Gabrielle Allman

Can you  be grateful for everything that has happened in your life-not just for the good things but for all that has brought you to this day? Remember, it was the suffering of God’s Son that brought forth a family of people known as Christians.  My own suffering is what God used to bring me to where I am today.

Right in the middle of the tears, the dance of joy can be felt. Seen from below, from a human perspective, there is an enormous distinction between good times and bad, between sorrow and joy. but from above, in the eyes of God, sorrow and joy are never separated. Where there is pain, there is also healing.  Henri Nouwen

I found an old photo album that I had made my husband for his 4oth birthday.  I had asked people to write him notes or letters of how he affected their life. I peppered the letters with pictures of the writers and our family. Looking upon it made me smile and I was so grateful that I had the thoughtfulness of mind to do that when I did, for our mothers are no longer here with us. Their letters are especially special!

But looking at the album also brought a deep sense of gravity to all of the trials and tribulations we have been through. There have been so many, down- right, ongoing, hard times, with little release. I haven’t always handle them with grace. I have had an emotional break down and I have tried escaping. I understand what Nouwen is saying about our perceived distinction between good times and bad times.  And I can also bear witness to what was the apparent worst time of my life, bringing the exact change and healing that I needed.

We are all on this journey together. We can help each other become more grateful for life even with pain. God is hidden in the pain and suffering of the world, and we get to reach out in compassion and show our love to others…that is the point<3

 

 

In A Storm

hurricane

With all of the hurricanes that have been hitting the US lately, and as I consider how frightening these times can be for people who are hit the hardest, I have been thinking about the storms I have weathered.

When you are in a storm of this magnitude, you have to keep your head about you and stay focused or you literally could be swept away. I remember a particular time when the circumstances of my life were in such a complete mess and the fall out from it was creating a storm, of such proportion, that I could have become completely emotionally impaired. My husband, George, had been speaking with a person whom we always respected and cared about very deeply, but the man was creating such waves out of his own fears, that my husband and I nearly drown in them.

One particular day, my husband was relaying a conversation to me that he had with this man earlier in the day. My husband was tired and distraught and so was I. As George was speaking, I started to feel that I was actually getting slapped by one enormous wave after another. With every question and accusation the man had posed to him from their earlier conversation, George’s voice actually started to fade into the background even though he was standing right in front of me. Next, my eyes started to glaze and I felt as if the pressure was starting to pull me under the water and I was literally starting to gasp with no strength to resurface. Right at that point, I heard the voice of Jesus clear as a bell; “JULIA!, Look at ME, listen to ME, follow ME!  I actually looked up to where I thought the voice was coming from. The roaring waves immediately turned into serene, foamy, level water! I came to my senses and with a clarity I had not known until that very point and I was able to be in complete peace and not be anxious. The storm, although I was still in it, was completely calmed as I looked to Jesus. It was truly amazing!

Jesus had done something very similar many, many years before with a man named Peter. Peter was a fisher man. He knew in his head that a man cannot walk on water. But one day when he saw Jesus walking on the water and he asked if he could do it! Jesus told him to come, and he actually did walk on water for a bit, but then it says in Matthew 14:30; “but when he (Peter) saw that the wind was boisterous, he was afraid and began to sink and cried out, saying, “Lord save me!”

It is natural to be afraid when the storms come whether they be natural or figurative. It goes against our natural inclinations to have faith and hold on to an anchor in the midst of a storm, but that is exactly what we must do. The heroic stories coming from the news tell of just such things during these natural disasters and have the theme of focus and faith all through them. We have to choose not to be afraid and place our grasp firmly on the anchor that will never let us be swept away in a storm.