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