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

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

 

 

 

Please Cover Your Butt Crack! (Sorry; I don’t know how else to say it!)

jeans picAs parents of an autistic son, we have had our share of embarrassing moments. Our son doesn’t have much of a filter. He is the youngest of four, and our first three were always quite well-mannered in social settings. I have had a myriad of experiences in the last few years to get me over people pleasing, many situations of my own making, but nothing calls for instant humble acceptance more than social faux pas with your own child!

There was the time when we were at a quaint, conservative, outdoor wedding and our son pelvic thrusted front and center … oh! Bad timing, really bad timing on a lot of levels! My eyes, already rather large, grow three times their regular size and my smile turns inward as I clamp my lips into my mouth! There were the times when we attempted to visit a restaurant and my beautiful son would expel gas from various parts of the body in fairly quiet setting with all eyes on us! (See my It Took Nine Years To Go To A Restaurant.)

But nothing turns me inside out more than seeing my son’s butt crack exposed when he bends over! Why does this undo me so fiercely? I think it’s because so much of this journey feels out of control for me. I didn’t get the instruction book for this child; there is so much to learn, so many new tools to try in a moment’s notice.  I already feel so inept, so unqualified for this job description. When my son bends over and inadvertently exposes himself, it’s another reminder that I didn’t plan appropriately, I didn’t do enough, and that I am not the best caregiver for this person entrusted to me. (All these thoughts I work through, by the way, one minute and one day at a time as I walk out my humanity.)

You would think that after it happened more than once, we would have put a plan together to ensure that it didn’t happen again. But you just do not understand, unless you understand what a cascade of events happen in a single day of an autistic adventure.

Well, the catalyst day came while we were at a Christmas party. We were having a lovely church Christmas party held in a picturesque, historic castle in our area. There was a white elephant exchange going on and it was time for our son to pick out his gift, which was done one by one, in front of the congregation. He walked up front to pick his prize out of the basket and displayed a lovely, round, full moon for all to see.

That was it! We had an epiphany. It was NOT going to happen again on our watch! It is OUR responsibility to ensure his dignity and teach him to care for himself when we aren’t around to remind him.

We bought him long tank tops and a new belt! He is not to leave the house with out tucking his tank into his jeans and putting his belt on, with a shirt over both. It works so well. He has a new routine, which he thrives in, and we have peace of mind that he has self respect.

I have had the opportunity to work part time at a school this school year. My eyes have been opened (literally) to the amount of buttock cleavage that is on display! It is just gross. I mean, don’t we all wince a little when someone bends over and the moon comes out? It is not reserved for just the kids either, which is even more disturbing! Remembering my son, I have bought a belt and tuck my shirt snugly in my pants because I bend over quite a bit on my job, speaking to children and otherwise.

Sometimes I want to shout; “Please cover your butt crack!” as I am sure people felt like  shouting to our son from time to time. But it is our responsibility as adults to teach these character qualities to our children. I know I must sound like a dinosaur in such a free spirited and filter-less culture, but I see what this one small shift has done for our son’s confidence and showing concern for some one else other than himself. We were all made for quality, importance, and distinction—this is just one small way of showing it.

I’m Doing The Best I Can

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“Mom, why didn’t you tell me the oatmeal was overflowing! Mom! Mom! Mom!??? Mom, why didn’t you tell me the oatmeal was overflowing? (I remain supernaturally quiet). Mom!! Why are you ignoring me?” Assuming everything in the universe that is wrong has been caused by yours truly...”Mom why didn’t you tell me….”

“Dorian, when you put food in the microwave too long, it  heats up and overflows.” “Oh!” he says, as if he has truly learned a new concept. A few minutes later…”Mom, why didn’t you tell me that the oatmeal was overflowing?!!Mom! Why are you ignoring me?” ( I thought we just had this conversation a few seconds ago and he accepted my response as a reasonable answer?) “Dorian, when you put food in the microwave too long, it heats up and over flows.” “Oh!”, he said.

Here is an actual excerpt of a 5 minute conversation we had the other morning at breakfast. This is very typical.  Of course the oatmeal isn’t always over flowing, but the intensity and seeming insanity is commonly overflowing. I am not sure why I have been chosen for such an enormous task as this. One which requires such superhuman love! I have not always dealt with it wisely and definitely have tried my hand at escape. Sometimes I think, after all of the education I have sought out, the prayers that I have prayed, the multitude of counselors and therapies we have implemented, that some how we should reach a plateau called, Easier! I am realizing that to get to the other side, you have to keep moving through, keep doing the next right thing, keep going through. Some times I let my son and my self down with how I respond but there is one thing I am sure of… I am doing the best I can.

National Autism Conference-Getting There.

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We are blessed to be able to attend the National (and there are inter-national attendees here as well) Autism Conference at Penn State University this week! I thought I would blog nightly and reflect on the things from each day.

So now, I will back up and start at the beginning of this story :-)We never know how things are going to play out with our son in any given situation.  We have been prepping him all summer about this trip, but we cannot be sure how he is interpreting any thing. He is typically not happy about any plans we make that he hasn’t made, and he always complains, so we are used to that! We have to sell him on any thing we do except anything having to do with eating or playing video games of course!!

About 30 minutes into our trip a few incidents happened that made my husband pull the car over in a fury and make me want to say; “take me back home, I don’t want to go with either of you!” Sometimes it is one thing after another with our son. Things that make sense to him I guess, but drive us absolutely bonkers and add an incredible amount of stress to our marriage. During this frustrating scenario that was going on, my husband bit his own tongue by accident, enough to make it bleed!! It was just all so awful! I was angry and frustrated, they were each angry and frustrated, and then my heart went out to my husband because things like this happen so frequently. There was just nothing to say that was going to be helpful, I could only sit in the salty silence of acceptance. My flesh wanted to go home but I got out my guitar instead and started singing my songs.20170730_200513

We got through unexpected traffic and dinner ,which continued the “ordeal”, and made it to our room. The pool at the hotel is very nice and relaxation came, when we all got in the whirl pool. Peace…

When our son hit the bed, with all of it’s hotel comfyness and pillows, it didn’t take him long to go out! He looks so peaceful when he sleeps, all of that frustration he deals with in a day  fades away and it is well with my soul.20170730_223916

 

 

 

 

Remember to Keep Going!

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If you have been reading my blog, you know I have been on a personal journey the last few years. Through that time, my husband and I were separated and every thing in the fabric of my life seemed to be pulling apart.

The way we parented, or did not parent our youngest, autistic, son together, was a definite strain on our marriage. You have these imperfections in marriage and parenting, but you can slough them off easier, I think, with “typical” children. But these inconsistencies will glare in the face of a special needs child and cause you to grow together or apart.

So, as we came to the bottom of everything we thought we had, and I personally was in the lowest place a person could be- I relinquished control. I told God, if He cared about me, and about this Holy Union He named Marriage, He was going to have to make something out of broken pieces. It has been a painful process, dying to self usually is! For if we are going to make something beautiful out of broken, it has to be sorted out, cleaned out, rebuilt and it won’t happen with resistance.

In the process, I approach my children differently. I am approaching my special needs son slower. I am more conscious of my being just a “vessel”, and I can pour out love to him, or frustration. I am in his life (and everyone’s for that matter) to pour out love, power and a sound mind. This is a work of The Holy Spirit- I do not have this kind of supernatural-ness!

Last night he asked me to pray for him and read the Bible to him, he was troubled in his mind. I was so blessed that he would even ask me to do that! At one point, he started kissing my hand, I asked him why he was doing that and he said; “your awesome”. Taken aback, I asked, “why?” He said; “because you are trying to help me!” How beautiful, how simple, how divine.

I was reminded of my friend buying me this Keep Going mug and how I would use it every morning and read it’s truth. When you  bottom out in life, it is not the time to quit and give up! It is the time to ask for supernatural help and run with endurance. There are Always second, third, tenth, hundredth chances. God NEVER gives up on you! Even if others do, and they will, you are there to be awesome for some one else. Keep Going- I am right here with you cheering you on!!

Perspective

autism quote

I think this is a great reminder for all of us, not just how we see the people in our lives, but in how we look at ourselves! Perspective matters.

I’ve been meditating on the fact that I am deeply loved, fully accepted, completely forgiven, and fully pleasing to God. I can often forget that when I see myself through the filter of my mistakes. But if I look at myself through that truthful perspective, I tend to see others through it as well.

Perspective and perception have even more to do with holistic health than what supplements and essential oils you use. You can be literally “transformed by the renewing of your mind” (Romans 12:2).

So today, take some time to encourage those around you in their strengths. Think about people’s strengths and tell them about it! We all get encouraged when we hear those things.

What are your strengths? What are your loved ones’ strengths? We want to hear from you today!