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- 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

 

 

 

 

It Wasn’t Always Like This!

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Over the last year, my husband and I have something we call “Friday Morning Dates”. It wasn’t always like this. This year marks our 25th wedding anniversary and for 23 years of this adventure, we didn’t have regular dates.

In the last few years, after our separation, I started posting pictures of our Friday Morning Dates on Facebook to make memorials along our journey and to encourage others in what is possible when you let go and let God.

We, by faith, have trusted that if we are willing to make changes in ourselves, and literally throw ourselves on Christ, that something beautiful will, and has to, happen. Whether we would have remained married or not, we both had to deal with the deep root issues that neither of us wanted to face. We realized that those issues were in fact affecting all of our relationships and that we would just take them into a new relationship if we were not together.

We started completely cutting out things that didn’t serve ourselves individually and our marriage…like not discussing anything that could be emotionally charged after 7 P.M. and conversely, we realized we could not get our son ready for school together in the morning. One of us had to leave- we had to change our routine.

We decided to start praying every day for our marriage (George usually calls me on his way to work and usually on his lunch break). And we needed to start having a weekly date, even if it was short. So as soon as the kids got on the bus, one of us would make breakfast, wrap it up and we would head off to the bike trails in the area (even in the middle of winter!).

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Every week, we read a book we have been reading through for two years; Face To Face; Seven Keys to A Secure Marriage by Dr. Jesse Gill ( who we have since started a friendship with and a dialog about leading a group study with his book). This book, similar to Susan Johnson’s Hold Me Tight, in it’s focus on attachment,  has revolutionized the way we look at our negative marriage cycles.

After we spend some time reading through the book, we take a walk (even in the snow!) and listen to each other.

As I am reading this, I can understand how some would say, “my significant other would NeVeR take the time to do these things!” I have been there! As a matter of fact, when we started this process, many times I did not want to be on the date! Many times while we were on the way to marriage therapy, I couldn’t stand being in the same car! When we went to a marriage retreat, we didn’t stay in the same room! Like the title says,  it wasn’t always like this , and we certainly haven’t arrived but we are miles from where we started. I thank George every week for making the decision to change his Friday morning schedule to make his marriage a priority, because if he didn’t do that, I wouldn’t have remained.

It wasn’t always like this, and it will ebb and change again. But I want to encourage YOU to be willing to change and grow where ever you are, especially when things look bleak. And fall in love with  Jesus who loves you more than any other person in the world, who has a perfect future and hope for you and who WILL grow something amazing and beautiful in you using ALL the things in your life to accomplish it!

Addiction…I Understand the Struggle.

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I am definitely taking a raw plunge on this blog. I have gently touched on the subject of addiction many times but I think straightforwardness is in order because there  are so many vices, so little time and so many lives being wrecked.

This is from Larry Crabb’s book, Connecting. “God declares that there is no goodness in sex outside the boundaries of a loving relationship with a lifelong mate. When we believe Him and therefore are inclined to do what He says, obedience yields a joy that supports us in what ever frustration may exist. ”

Do you agree with that? I know that I have been spared pain and destruction when I have hidden myself in” the loving marriage relationship”, even when it has been a down right unloving relationship and even when it called for separation.

He goes on to write; “A man (or woman) has a difficult day of meetings and retires early to his hotel room. One press of the button (or call that call or that sext) and pornography will fill the screen.  He calls his wife, gets some work done, and then goes to sleep…never presses the button. The next day, meetings go well, that evening the urges come back, he yields.”

“What ever the complexity might be, it is clear that we are a strange mixture of good and bad urges and they can have a life of their own. With God’s Spirit we can love as Jesus did, but we can also sin like the devil..indwelling sin is a lifelong problem-indwelling goodness is a life long reality awaiting release.” (All wrapped up of course in Romans 7&8 )

“His personal problem is sex addiction. That man senses a voice that yearns to be filled but lacks the sense to realize that he longs for LOVE, not pleasure.” And that is where the wreckage happens. I know, I have experienced it first hand.

Is God’s love enough? That has been my question. That has been my adventure. That has been my pursuit. Can His love surpass anything this world or anyone else has to offer me? Can His love be so tangible and intimate that any other would pale? Is He that interested in my well being and future? Or is what seems a justifiable and reliable provision of pleasure/center of life/lust/control/addiction really soul satisfaction?

In the midst of my addiction behavior I could say; “I can live with out_______, I cannot live without God”- Even though nothing in my flesh wanted to let the addiction go. It is so easy to feel isolated when you are struggling or failing. I would look for anything on the internet that might help relate to me, a Christian woman caught in addictive behaviors. I did find an extremely helpful prayer that seemed to understand the snare and all of the anguish I had been caught in. But more times than not, most Christian articles related to addictions or failures left me feeling more demonized as the guilty party.  I needed to know there was a light at the end of the tunnel, that people had not only come out the other side, but that they were Alive!, Thriving! and were loved and used by God again! I want to be a light like that to someone who is where I have been!

You have to understand that I believe Jesus delivers!! That all power belongs to Him! That nothing is too difficult for Him! That He came to set the captive free, and had when I first came to Him, so why was I in bondage again? I had to understand why I would allow myself to come to such a low place and risk loosing my whole life as I knew it. During the search for that answer, I learned so much about myself and God.

These are the things and people He has used to reveal who I really am in Him and His love toward me. If you are caught in addiction, and really want freedom and health, these are the resources I highly recommend. First, Friends who see the greatness in you. I tightened my circle of friends and unfortunately had to cut off some really significant relationships that couldn’t be that for me (my husband being my best friend  and support  even while dealing with his own issues.) Any of Larry Crabb’s books…I think I have read and re read them all. Henry Cloud’s Changes that Heal and Robert McGee’s Search for Significance.  I had two amazing Licensed Marriage Family Therapists (which are the only  type of counselors that I recommend) who I still reach out to. Through a set of supernatural sequences, I got a hold of The Adulterous Christian Woman; The Lies that got me there, truths that brought me back by Lyndell Holtz, who has become one of my dearest friends since, and continues to be a radiant light ahead of me.  I also immersed myself in watching You Tube videos by Malcom Smith and Sylvia Pearce who’s life mission is to help Christians understand who they really are in Christ.

If I could have left my life and gone some where to figure it all out, I probably would have. But God has been so good to me to send me help while living my day to day life out and I believe He has given me grit and perseverance in the process.  Like I said before, I want to be a compassionate light leading some one else who is navigating their way out of the pit of addiction…I understand the struggle.

 

 

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!!

One Thing I Do…

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This picture was taken at one of my favorite parks in Pennsylvania, during an anniversary weekend with my husband this past fall. The picture paints a thousand words in my mind.

It was a significant weekend for us, because we had been separated prior to this trip. When we went there the year before, we did not think we would ever return there as a couple, and I did not even want to take any pictures to document our time there.

We have been through a lot in the last several years. Many things had taken a toll on our marriage and we both reached points where we really didn’t want to work at it any more.

When you are weak and tired and other seemingly exciting opportunities present themselves to you, it is almost impossible to resist (but it is not impossible). I made a lot of poor decisions during that flat time in our marriage.The ramifications could have been so much worse, but the consequences will never go away. I can only thank and praise God for His mercy and unfailing love to me.

When I look at this picture of the road in the woods, I can’t help but think of the words of Dan Fogelberg’s song, “Along the Road”:

Along the road
Your steps may tumble
Your thoughts may start to stray
But through it all a heart held humble
Levels and lights your way.

The Bible calls God’s Word “a lamp unto my feet and a light unto my path.” This is true, and this is how I got back onto the road.

Another exceptional truth is that, as long as we are looking back when we are trying to move forward, we will stumble. The apostle Paul had something transforming to say about this.

He was born a Roman and a Hebrew. Both those qualities gave him many rights, much authority and power. He lived during the time when the Christian church was just emerging, and by Jewish and civil law, he was zealous in the murders of people following Jesus. He then had a life-changing encounter with Christ and began to defend the faith. He now had great understanding and knowledge concerning both sides of the argument. He also had great understanding of forgiveness and mercy, and most Christians would look at him as a man who had “attained it” who had “made it,” who “got this”.

However, he saw it differently. In his letter to the Philippian church, he said, “Not that I have already attained, or am already perfected … I do not count myself to have apprehended; but one thing I do, forgetting those things which are behind and reaching forward to those things which are ahead” (Phil 3:13 NKJV).

One thing I do: forget what is behind and reach for those things that are ahead! This is easier said than done. It is not easy to forget what you have done, especially when it has caused a great disturbance, not just in your life but in the lives of others as well. I think it is human nature to wallow in self-condemnation until we feel we’ve reached a sufficient penance. And some religions teach this. But this is not the way God deals with us; that is the way we humans deal with ourselves.

God is instantaneous in His forgiveness when we ask. God, through Jesus Christ, answers us with “Neither do I condemn you, go and sin no more” (John 8:11), “Though you sins are as scarlet, They shall be as white as snow”( Is. 1:18), “If he sins against you seven times in a day, and … returns to you, saying, ‘I repent’, you shall forgive him” (Luke 17:4), “If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.” (I John 1:9).

God is outlandish and lavish in His forgiveness toward us, as proved through Jesus’ death on the cross!

This amazing forgiveness is what I have been experiencing both personally and with my husband. It is not from this world. It is supernatural! Forgiveness is a beautiful, precious gift, and it’s Christianity’s pinnacle!

When doubts and thoughts clamor at the door of your mind, deal with them! Have you asked God to forgive you, or do you just keep thinking about them? If you haven’t asked for forgiveness, do it now. If you have, meditate on the scriptures I listed above and look up more of them. I don’t know anyone who does not need to hear this good news! I hope it has been challenging and renewing to you today.

What are your thoughts on forgetting what is behind?  We want to hear from you today!