“Oh, no. Oh, no. Oh, noooo!!!!” The wails started within minutes after dinner had ended. As is our habit, we waited to hear if it was over, or just beginning.

It was just beginning.

The day had gone well. I had taken Sam to a research study that was scheduled in the afternoon. For three hours, he played with clinicians for testing that helped them better understand how children’s brains with autism work. While he did that, I filled out about eight different forms about his development and current strengths and weaknesses while connecting to their WiFi and watching Netflix. I promised him a new toy if he did really well, and he worked very hard. He was paid $30 in cash for his participation, so he had money to go shopping with when he was done. (I got $10 just for filling out those forms!)

He picked out a new Lego set and skipped happily alongside me as we walked down the sidewalk of the outdoor shopping center. I held a large shopping bag in one hand, and Samuel’s hand in the other. Both of my hands were full, matching the state of my heart. I felt myself smiling inside and realized I had a giant grin on my face as we walked along. He let go of my hand, jumping around and making funny noises, and I smiled even more, delighting in my son.

It was dinner time when we arrived home and it was a peaceful meal filled with laughter and good conversation. As it wound down, Sam politely asked to be excused and cleared his dishes from the table to the sink. He hadn’t had time to put his new Lego set together before dinner, but he had opened a couple of the bags to find the minifigure parts to piece together before I realized what he was doing. We had cleaned up the pieces and put them in a sandwich baggie to store in the box, which he was now taking out in his room. That’s when the wails began.

Kyle and I looked at each other from across the table, silently exchanging the look that said, “Do we wait, or go find out what’s wrong?” Sam began to cry and wail louder, forcing me out of my seat to go to his aid. A Lego piece had fallen off his table and he couldn’t find it. I quietly told him I would help him look for it, but that he needed to calm down and take a deep breath. He continued his exaggerated breathing instead, and insisted I could not help him because I didn’t know what the piece was. He couldn’t describe it to me as not even he knew which piece it was. He didn’t know what color or shape it was, only that it was “tiny.” I told him we’d look for it anyway and assured him we would find it. But that would have to wait now, as he had entered meltdown mode. I followed our normal protocol of removing him from the situation to “take a break” until he was calm enough to go back and search.

Samuel HATES taking a break, but I know how much worse it will get if he does not first calm down, so that was my job, which required moving him away from the Legos. This did not bode well for either of us. His meltdown lasted a full hour, during which he got as close as he could to scream his loudest in my ear. His body was unstable on his bed, and I had no choice but to steady him while turning my head to lessen the audible blows – twice. A couple times, he jabbed me in the ribs with his elbow to let me know how mad he was. With a stone face so as not to reinforce his behavior, I repeated my instructions to him as I blocked his elbow with my hand.

After more severe behavior with both myself and Kyle, we had finally succeeded in physically dressing him ourselves and putting him in bed. Miraculously, he was quiet, and Kyle and I sat together on the couch in a kind of shock after what we had just gone through. Our hearts ached, and we talked through what it meant to enter his suffering with him, to love and comfort him as we speculated his likely fear and confusion in his extreme behavior. How were we to reach the heart of our child? The comfort we wanted to offer in the ways we knew how to comfort him was sent on a detour by autism. As we desperately tried to comfort ourselves and find a solution for the next time, we heard Samuel call out again.

I went to see what was wrong, and he said he was just stretching. As I turned to walk out of the room, he said, “Mom? I want to lay down with one of you guys.” I called for Kyle to come as I climbed into Sam’s bed. Kyle walked in and Sam told him he wanted us both to lay down with him for five minutes. We laid on his bed with our son sandwiched between us. Samuel turned over to lay on his stomach, and stretched out both of his arms across our backs in the shape of a “t”. After a few minutes, he told us we had one more minute and flipped over to lay on his back, still putting one hand on each of us where he no doubt was silently counting down from 60. He leaned over and kissed Kyle’s cheek, then turned and stretched to kiss me too before telling us we could go now. We told him we loved him and kissed him back and quietly closed his door as we left.

We hugged each other, trying to grasp the grace we had just experienced. I told my husband, “See? It’s going to be okay.” With tears in his eyes, he said, “No. It’s not ‘okay’…” his voice trailed off. Then with more strength, he added, “But at the same time, it is.”

This is the hope in which we walk. When the challenges and struggles of autism hit us hard, we do not despair. We continue to hope in the grace-filled moments like these where we feel and hear the whisper of God tell us that in the middle of it all, threaded through every fear and every tear, He is making all things new – little by little. He calms our fearful anxieties. He makes our tearful hearts smile. He turns the chaos to peace. He makes the struggle more beautiful because it ends with the sweet kisses of our autistic boy.

I write this not only for your encouragement, but for my own when the next meltdown happens that might not end in kisses. I write this to remind myself of the glimpses of glory I have seen with my own eyes and felt with the touches of my son’s hands and lips, that I might hope to see it again.

What glimpses of glory do you hold onto in your own struggles?

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Without boring you with the details, and really for my own sanity not to repeat every second of our evening, suffice to say that something new emerged tonight that I had not experienced before. Ever.
In Sam’s anger and frustration, he acted out with aggression towards me, which he has never done before. It was not nearly as severe as I know fellow mom friends face often, but it was new to me and scary. He grabbed and pulled at my clothing and my arm at one point, with me prying his hands off of me and trying to walk away and leave him alone for his “break” (aka time-out). Later, angry at his consequence which he chose, he reached up and very intently pulled my hair. It was obvious that everything he was doing was intended to hurt me and he was looking for a reaction. That is more clear now than it was in the moment, but even in the moment, I tried very hard not to react strongly as that only reinforces the behavior.

I feel shocked that he would act like that towards me. I feel scared because he is only 7. What might he do when he gets older? My husband reminded me that he had done something similar to him, hitting him in the face during a therapy session to get his attention (which did not work). He never did it again. It’s possible this is only one incident never to be seen again. It’s possible the same thing will happen again tomorrow or next week. It’s possible it not only will appear again, but will continue to progress and get worse. That is a terrifying thought. What will he do? What will we do? What about his brothers? The “what ifs” are endless.

I am trying hard to make myself NOT dwell on the negative and the what-ifs. I know I need to have a plan in place. It would be helpful to map out things that we see have caused frustration that could lead to this behavior in the future and do all we can to prevent it. However, the point of all of this is: never assume you have autism figured out. I thought that because we have reached this point and have come so far and progressed so much that this would not be our problem. But autism surprises us daily. How could I have possibly thought that I had it all figured out and there would not be any other “issues” to arise? I feel so stupid and so discouraged. I know I shouldn’t feel that way, but I do. I just thought we’d keep going along, dealing with screaming and meltdowns. I just never thought I’d also have to deal with… this.

I am very thankful for friends, who, although I hate that they have already had to walk through this fire, they are able to encourage my heart and help with future how-to scenarios. Maybe that’s why I’m in it now too. It’s coming for others, and I will be their help in the moment of tears. I pray that this is a one-time only incident testing me and testing how far he can go. The solutions aren’t easy and they are confusing since every little thing requires a different way to handle it. I continuously ask myself if I’m doing the right thing. Am I truly helping him? Am I working hard enough? Am I loving him well enough? Am I looking past autism to his heart and still pointing him to Christ his Savior to rescue him? Am I dwelling in pity? Am I trusting God?

Tonight, so many questions. Tomorrow is a new day. May God grant his grace and mercy on us.

The post High Functioning Doesn’t Mean "Normal" appeared first on Hope in Autism.

Without boring you with the details, and really for my own sanity not to repeat every second of our evening, suffice to say that something new emerged tonight that I had not experienced before. Ever.
In Sam’s anger and frustration, he acted out with aggression towards me, which he has never done before. It was not nearly as severe as I know fellow mom friends face often, but it was new to me and scary. He grabbed and pulled at my clothing and my arm at one point, with me prying his hands off of me and trying to walk away and leave him alone for his “break” (aka time-out). Later, angry at his consequence which he chose, he reached up and very intently pulled my hair. It was obvious that everything he was doing was intended to hurt me and he was looking for a reaction. That is more clear now than it was in the moment, but even in the moment, I tried very hard not to react strongly as that only reinforces the behavior.

I feel shocked that he would act like that towards me. I feel scared because he is only 7. What might he do when he gets older? My husband reminded me that he had done something similar to him, hitting him in the face during a therapy session to get his attention (which did not work). He never did it again. It’s possible this is only one incident never to be seen again. It’s possible the same thing will happen again tomorrow or next week. It’s possible it not only will appear again, but will continue to progress and get worse. That is a terrifying thought. What will he do? What will we do? What about his brothers? The “what ifs” are endless.

I am trying hard to make myself NOT dwell on the negative and the what-ifs. I know I need to have a plan in place. It would be helpful to map out things that we see have caused frustration that could lead to this behavior in the future and do all we can to prevent it. However, the point of all of this is: never assume you have autism figured out. I thought that because we have reached this point and have come so far and progressed so much that this would not be our problem. But autism surprises us daily. How could I have possibly thought that I had it all figured out and there would not be any other “issues” to arise? I feel so stupid and so discouraged. I know I shouldn’t feel that way, but I do. I just thought we’d keep going along, dealing with screaming and meltdowns. I just never thought I’d also have to deal with… this.

I am very thankful for friends, who, although I hate that they have already had to walk through this fire, they are able to encourage my heart and help with future how-to scenarios. Maybe that’s why I’m in it now too. It’s coming for others, and I will be their help in the moment of tears. I pray that this is a one-time only incident testing me and testing how far he can go. The solutions aren’t easy and they are confusing since every little thing requires a different way to handle it. I continuously ask myself if I’m doing the right thing. Am I truly helping him? Am I working hard enough? Am I loving him well enough? Am I looking past autism to his heart and still pointing him to Christ his Savior to rescue him? Am I dwelling in pity? Am I trusting God?

Tonight, so many questions. Tomorrow is a new day. May God grant his grace and mercy on us.

The post High Functioning Doesn't Mean "Normal" appeared first on Hope in Autism.

On the autism front, we have begun taking Samuel to the Kennedy Krieger Institute for ABA therapy and parent training weekly. At first it was every other week, but it’s clear we need to start off with weekly sessions and back down from there. Our brand new tablet broke one week after we gave it to Sam, but thankfully it was replaced for no charge. We just had to wait out the time to mail it back and get a new one – all the way from California. It now has a cushy case in which to live, in addition to a carrying bag for additional padding and ease in carrying it wherever we go.

We’re starting a semi-new program at home. I say semi- new because the concept is not foreign to us, but it’s been a very long time since we’ve really implemented this kind of therapy at home. We’d gotten back into less of a rigid ABA routine with Sam, and were beating our heads against a wall when we tried approaching him as a neuro-typical kid instead of confessing once again that autism is a part of our lives. We simply cannot use the same methods the same way with him that we use with his brothers. It doesn’t work. And then we get frustrated because he’s frustrated and melting down. It’s been a vicious cycle of constant realization that our lives are simply different than what we always wanted them to be.

So we confess we can do better, and we resolve to do so. It’s not going to be easy. We know from past research and experience that what the therapist tells us will happen will happen. That is, the behavior we are changing will get worse before it gets better. It’s called, “extinction burst”. We had to realize that the behavior we had been catering to is more damaging to Sam and to us, and there are ways to help. We had pretty much given in that things were the way they were and there was no changing it, only coping with it.

But that reminds me of something I was told once – we’re not called as Christians to “cope” with life. We’re called to overcome. We’re called to victory! We don’t have to settle for what is thinking there is no more. There is more, and there are ways to achieve it.

Sam’s constant demands for attention, and tantrums and meltdowns and rigidity are in for a rude awakening, which means we are too. We are praying hard that our goal will be accomplished – for his heart to be changed, his mind to be healed, and those by-products of autism to be overcome. I don’t mean the autism is going to go away. But we will be teaching him (and ourselves) there is a better way to live this life with autism, and we will press on and persevere together to win. Please pray for us. We need wisdom for ourselves, and compassion and love for our son. Discipline is hard. Self-discipline to discipline and teach what is needed is hard. We covet your prayers.

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