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

Turning 50- Beauty Much Deeper Than Skin.

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                                                                                     facial by Doug at Simply Skin in Clarion, PA

 

 

Wow! I used to think people were so old when they were fifty! I mean, in 5 years I could live in a 55 and over community like my parents used to…that’s so weird!

Here I am, it is what it is, I am what I am! I went to the Chiropractor the other day and he said; “Aren’t you so glad you started taking care of your self when you did, it shows! You don’t look older than 35”! I love that man!!

Seriously, I have learned that I do care about how I look but over the years it has come with much more balance than obsession. Many years ago a wise Christian woman told me that a smile was the best thing any woman could ever do for her face- a free face lift! I have been practicing that ever since!

I have recently been thinking about what I have learned over my life. In the last three years alone, I have learned more about myself than I could ever convey.  But some high-lights have been; Aromatherapy, Human Behavior  and Autism. I have done this  through classes and certification, living with my son, working in the field and personally working with therapists.

After playing the drums and piano most of my life, three years ago I started learning guitar  and returned to taking voice lessons again.  I have been working on pieces that are so challenging, I want to scream and throw them in the fire place!! I hate how uncomfortable and irritated change can make me feel, yet I desire to grow, and that takes incredible effort.

The most profound lesson I think I have learned in the last three years can be best conveyed by a story in Shauna Niequist’s book, Present Over Perfect. Shauna conversed with a man on a ferry ride  and he shared with her that he was skilled at making people “feel loved in an instant.” His business started out with genuine love and creativity and he loved spreading the message every where he spoke- he was extremely successful. He gave every one he met his best attentiveness and energy! But along the way, “he lost the ability to demonstrate real love to the woman and children who were at home”, and he eventually lost them.

The story of this man angers me because I have been the man, and I have also been charmed by the man! The story scares me because we can “loose” something we once had.  We save our best and turn on our energy for those who do not know us so well, not those closest to us. We get very good at being charming with relationships that are in the outer sphere because we simply do not want to express more effort learning better tools for intimacy at home.  I almost lost my soul in such an experience and I know of many who have. That is a very important lesson to learn, and yet, I am keenly aware of how capable I am of repeating it.

That made me think of a weighty scripture that has always grabbed me. Proverbs 31:30-31 Charm is deceitful and beauty is vain, But a woman who fears the LORD, she shall be praised.Give her the product of her hands, And let her works praise her in the gates.

Fearing the Lord will produce something of value, something lasting, pure and true. It has benefit, not just to the person who fears the Lord, but to others who have been recipients of the good works. It multiplies and ripples out in ways that make others want to give thanks for that person. In contrast, when we are charming and deceitful, it only serves self, scratches the momentary itch but at the same time makes self hungry for more, and can potentially ripple into a wake of destruction and ruin.

I am 50. I have been changing, growing and learning life altering lessons among other things. I want to be beautiful…but in ways that are much deeper than skin. In ways that are life giving and nurturing, today and forever<3

 

 

 

Coincidence….

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Alcoholics Anonymous has a saying; Coincidence is God’s way of doing something and still remaining anonymous! I agree with that! When we visited a forest a few weeks ago, it was apparent there had been a significant storm in the park with an amazing amount of trees that had fallen over forest stairways and paths. I was pondering the timing of our trip, comparing  the trees that had fallen over all of the paths against those that had been sawed away for us to get through,maybe even just days before. I said; “it is not coincidence that this storm happened when it did and we chose the weekend that we did. If we had come any earlier, the devastated paths would have made it impossible to navigate.”

I felt a similar thing happened yesterday at a festival I worked, at attending my Honest Aromas booth. God had orchestrated certain people to be there at certain times in my day and I would even say He had prepared me a head of time through a dream the night before and a cell message on my phone from a friend sharing a spiritual insight. It didn’t feel like an orchestration while I was navigating it, it felt like freakish coincidence in the way we all normally define that word. But as I processed the entirety of the scenario through the evening, there was no doubt that HE is at work and that this was another step on the journey I have been on toward Him and His purposes in my life and in the lives of others.

It is easy to react. It takes patience and self-control to say; “God what are you up to? What are you doing in this situation?” But that is exactly what He gives us self-control and patience for!! I am learning (slowly, very slowly!) how not to be over emotional in my emotions! Yes, I have a lot of emotions and I have always been a very caring person, but I do not need to be ruled by my emotions. I can choose how to respond and that is truly all we have power to do. So this set of circumstances gives me and opportunity to feel a broad range of emotions and ask God what He is up to, and sit and rest in His Doing something in the situation! He is up to something in your life as well and it is no coincidence;-) Tell us what’s going on in your life, we want to hear from you today!

 

Autism Conference, What Did I learn?

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Henri Nouwen, while working at L’Arche Daybreak, said it best, so I am going personalize his sentiment! This is what I learned,

Going to The National Autism Conference was a painful experience for me in many ways. I had to face all my limitations and shortcomings directly, and with my husband and son. It was also a life giving experience seeing my handicaps so clearly and those surrounding me. This helped me make them not just stumbling blocks but gateways to solidarity with those who cannot hide their disabilities and who form the core of our community. 

Any time we take Dorian out of his routine, there is upset. We realized that this was the longest one on one time we had with him…ever. In the past when had a few days alone with him, eventually there would be a sibling to buffer our relationship. We had really excruciating  times with no where to run! We all had to reach deep- so that is good, that is growth, that is progress! This was coupled with intense sessions of Autism Information from sought-out speakers. There were a few parents who simply had to leave, their children couldn’t take it one more minute. We have been there, but we realized, we pushed through this week and we have all found things we really appreciated and are thankful for!

George and I also had some pretty heavy marital issues going on. Some times when you re visit a geographical location it can bring back memories…good and bad. We had to over come, reclaim as it were, this location.

The last day we were at the conference, we went to a session by Dr. Jonathan Ivy on Token Economies. Having tried Token Economies in our home for over 20 years with varying degrees of success, we were interested in having a whole session on this. He did a fantastic job explaining the key components of a successful Token system as well as why they fail. I could understand, during his explanation, why some of our Economies failed or simply never took flight! You have to have a clear definition of what you are working for and what your target behavior is- you may be trying to decrease undesirable behaviors or may be trying to increase one’s that aren’t as evident. He is a researcher and communicated his eagerness to collect more data and do more studies. You can find more about his research at this link.

Our hope is to implement a Token Economy for our son’s morning routine this school year. I was equally inspired how I might use these more to motivate everyone in the home, including myself!!

When the week was done, we all felt saddened at the thought of leaving the campus! Something really shifted in our dynamic through those days together, we all had to be mentally and physically strong and we were…together. I learned more about my self, as I often do- but I learned more about my husband and son too because I willing to really listen. I learned that at the end of the day, it isn’t your test score, diploma or degree that brings great success or a platform from which to speak, but it’s your resilience and grit that is going to make you stand out and move forward<3

(Read the earlier blogs on the conference; National Autism Conference-Getting There, Autism Conference- Day 1, Autism Conference- Days 2 and 3)

National Autism Conference-Days 2&3

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Can’t believe how fast this week is flying by! Dorian has been doing a great job of sleeping in a little longer than usual, enjoying his super comfy bed! He has been enjoying his “Children’s Institute” class and all of the activities they have been doing. Today, he had to wear his swim trunks to class as they were having out door water activities of all kinds! The grounds and the campus as a whole are extremely beautiful and relaxing.20170731_162813

Yesterday we went to a morning session on, “Using Drugs to Improve the Behavior of People with Autism” by Alan Poling, and learned that there really are not any specific studies for prescription drug use and Autism! Of course many people treat the symptoms of Autism such as ADHD and Anxiety with medication, but there just isn’t the data to show the benefits for Autism. Pediatricians weighed in on the conversation and said at the end of the day, they just have to “try” what is available and see how it works with a particular individual. I guess we were surprised that there isn’t more research or cutting edge information on the use of drugs for this wildly growing disorder, but we are not surprised that drug companies are in business to make a profit, not run studies:-(

In the afternoon, we went to a whirl-wind session given by Jolin Jackson on “Social Skills”. She gave about 6 hours of information in her fast paced 3 hour session!! I guess the biggest take away for George and I on the topic, were the use of  motivational items and reinforcements to encourage social skills and that we need to be consistent. There was SO much information in that session,  I am trying not to get bogged down with technical terms, but trying to take nuggets that I can implement in our daily lives pretty easily.

When we left there, we tried to go to a store before we went to dinner at a Thai Restaurant. Both ideas did not go well and it was very reminiscent of the time we had on  the trip here. George asked me to take over for him for a while, which we are both willing to do for each other, but it didn’t take me long to be in the same mental space as he was. We really were trying to expect too much. We hardly ever go out to eat with Dorian, it is just hard, and not enjoyable for anyone- so we did pretty amazing having several meals out together. The night before we went to the Happy Valley Brewery which is a super cool establishment! The food is excellent, as is the atmosphere, and all in all, it went as well as we could hope.20170731_165353

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Today’s sessions started with Judah Axe giving a lecture on Problem Solving. Excellent! Here is a list to consistantly go over with any child, but especailly important for your Autisitc child. In every situation get them to start asking and answering;
*what is happening?

*What are 3 things I can do?

*What might happen?

*Which one of those 3 things are better?

*How did I feel that it went?

We can see that implementing these questions consistently will get Dorian to start thinking about his actions and can be taken into every situation, eventually when we won’t be around to prompt him.

Our last session was on transitioning out of high school by Jane Thierfeld Brown. We also got alot out of this lecture and panel and are thankful that we heard the information now, while Dorian is starting high school. Jane high lighted how the biggest problem with Autistic children transitioning into college is, their parents having been doing way too much for them and not allowing them to be a part of their IEP’s or appointments. When the student gets to college, they do not even know what their disability is or clearly be able to state what they need their accommodations for! The parents are no longer, by law, able to communicate with school officials and it makes for a train wreck. I was reminded that although there are a few things that Dorian simply cannot do, and we have tried, there are many things we need to make him responsible for. Parents, one simple thing….make your child get up for school by him/herself!! We are doing many disservices to our children when we do too much for them. I have always had our children do their own laundry and make their own appointments when they had the skills to do so. I see that I handle more for Dorian than I did for the older children, but was challenged to change that potentially bad habit. Get more information on that and more from Jane at PaTTAN.

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This evening we went to Mt. Nittany and took a hike. We MOTIVATED Dorian with Pizza if he would do the trek with out any complaining! It worked and we had a great evening walking around parts of the Agriculture campus, eating ice cream at The Creamery and taking a late swim back at the hotel.On the way to the car, Dorian took my hand and said, “I like when you hold my hand, it makes me feel safe.”!! I celebrated that sentiment with him because he would not have been able to communicate that to us before-Praise God! As I am typing this, I am thankful for everything in this week and I am ready for bed;-)

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National Autism Conference- Day 1

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We got to the conference on time, yay Allman’s!! We took Dorian upstairs to his “Children’s Institute” classroom met by warm staff, eager to meet him. We were awarded a scholarship this year for him to be part of this fantastic program while our conference is going on simultaneously.

The morning was filled with introductions and a Keynote by Vince Carbone highlighting Skinner’s “Legacy to Education”. This was followed by David Mandell’s Session on “The Shifting Sands of Autism Policy and Policy Research”. Which all of the attendees attended and were informative and helpful. I sense that every one here has a deep interest in Autism and is excited at the prospect of parents and professionals networking to be part of a bigger, supportive team.

We went to pick Dorian up for lunch, he seemed pleasantly calm and informed us on the way outside to the picnic area, that he was not autistic because he liked Batman! We have had discussions about his “specialness” from time to time, some times he asks questions, other times he specifically does not want to have those conversations.

George and I decided that we wanted to attend the session by Dr. Robert Naseef titled; “Families of Children with Autism: Taking Care of everyone’s Needs”, in the afternoon. This title really spoke to us because we constantly feel inadequate as parents especially  giving our other daughter who still lives at home, enough of our time. It hasn’t been easy for any of our children and we both feel we have failed them in many ways as parents. But Gabby is the middle child and it has always been easy to overlook this adorable and accommodating child. Several years ago, she started developing uncharacteristic  behaviors that made us have to pay attention and intervene. Dr. Naseef addressed this later in his discussion stating; “we don’t want our typically evolving kids to develop symptoms to get our attention.” We can see now that this is clearly what she was doing, but we didn’t recognize it at the time that it was happening.

His discussion went much deeper than the title, building a strong foundation and contextual platform for the birth of a family. He referred to the book; The Birth of a Mother, by Drs. David and Nadia Stern, explaining that when a baby is born, a mother and father are also born as well.

He asked the audience if it was possible to “give your children equal amounts of time”? We all had to agree that it is impossible to do that, to which he added, “we give them each special time.” He shared that raising any child was difficult on the marriage relationship, “raising a child with autism is over the top!” He gave a list of what siblings want/need and reads as follows;

*They want parents to notice their accomplishments

*They want a fair amount of attention

*Time alone with parents

*Time alone with friends

*Freedom to complain

*A family life as normal as possible

*Information about their brother/sister’s condition

We are thankful, and can look back over the last few years and say that we have really attempted to build these habits into our once fragmented family, in an aggressive way.

Other nuggets that were shared by this Psychologist/ Father of an autistic son were; “We need to celebrate all the little things. Success is the reinforcement”. “Life keeps giving us a chance to learn what we need to learn.” And, “Help them live the life they have, the best way possible.” Dr. Naseef is also a WordPress Blogger and you can find his blog; “Love doesn’t keep score. Siblings do” with this link.

George and I found needed strength and affirmation from this session. The stress of raising a special needs child makes your deficits as a couple and as individuals annoyingly glare like neon sign, and only by God’s grace and strength are we walking this together. We got another glimmer of hope that as broken as we are, that we have what it takes to raise this son we have been given for another day. Dorian’s name means gift and we need to remind ourselves, often, to see him in that light- because we both struggle to. Thank you to all of our friends, family, and therapists for your help and encouragement to us in our story, and thank you Dr. Naseef for taking your time to share yours and listening to some of ours.

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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