What does it mean to be social?

This has been a topic on my mind for a while now. So I thought I would expand upon my thoughts. There has been a general understanding from those outside the Autism community that those on the Autism Spectrum are not social in the typical sense. The typical sense meaning that those that are social interact easily with those around them, make friends easily, and have little to no anxiety in comfortable social situations. Often when I am in a conversation about my son being on the Spectrum, it seems that the first perception seems to be that he is not social. There are probably many reasons for this. One being that he often will separate himself in large crowds. For example, we have had a lot of gatherings at our house in the past. When these happen, he will often go into another room and play the iPad. Sometimes he will engage with the other children for a period of time and then withdraw. Often these gatherings are noisy and a lot of children come. Another reason this is perceived often is because in typical social situations my son may growl instead of using words, sprint in the opposite direction, or lock his jaw, etc... These are not always typical reactions that people expect so a perception is made. However, often these reactions are due to a either anxiety, excitement, or a desire to engage. When he is really excited he may do repetitive behavior (toe dancing, hitting his stomach, or verbal noises).

I have seen him put himself in uncomfortable positions and fight his anxiety because his desire to interact is that high. He has learned coping skills over time and become more socially aware of what other kiddos may not understand. Two years ago, for instance, he growled at everyone or screamed when someone engaged him. Now he will stay put often and fifty percent of the time give a reply with his dinosaur greeting as well. (:

As a therapist, I have come in contact with a lot of kiddos on the Spectrum, and I see the same desire. Often I see anxiety come from sensitivity to others' feelings or the chance of misunderstanding situations and doing the wrong thing. However, the desire is always there. The desire may not be to have 100 people around, but 1 or 2 is sufficient. The "typical" response may not always come but again the desire is always there to engage.

So how can we bridge the gap in understanding and awareness with this issue. Here are some thoughts:

1. Whenever this idea is presented, I think it is an opportunity to EXPLAIN, EDUCATE, and give the opportunity for that person to get INVOLVED. For example, If someone says to me "he doesn't seem very social" I can then explain that he does desire it, but he needs to engage on his own terms, and for that person to continue trying and not give up or think he is not interested.

We have had several family friends to do this very thing. When he has not given a response 25 times, he might begin the 26th time. Now he has several family friends that he will engage with easily because he has been given plenty of opportunities from the person to do so.

2. Know your child's limit with social interactions. Children are often unaware of their own limits until they learn what they can or cannot handle. We learned this through trial and error. We know that he does his best interacting with one friend over. When we have more than that, we need to devote our time to joining in the play with him and not just socializing. Also time is important. He does his best when he is not tired or hungry of course. But also play dates that are around an hour.

3. Prep your child for interactions. We do a lot of role playing of situations for his developmental level. We do mini-plays, and I play different types of friends with different interests and personalities. I also prepare him for play dates because they are not a part of his normal routine. We will put it on his schedule or we will talk about it starting a few days ahead of time. This is a suggestion in the book as well.

4. Don't make your child feel bad or draw negative attention to non-typical responses. This is tempting to do at times when we as parents get wrapped up in what others may think. But draw attention to any positive behaviors and reward and give praise to any interactions big or small.

5. Give your child the confidence and the tools to say and do what they need. My son withdraws when he has had enough or is over-stimulated. This has taken practice for him moving from having a meltdown to withdrawing for some quiet time. We have worked hard to let him know it is ok to do that and to know how to do that. We have also given him a picture board with different choices for calming or sensory input choices. This has worked well, and he often will do things on his own.

6. Finally, set goals for your child's desire for being "social" that are attainable and that he/she wants for himself. Often I know as a parent, I want a lot of things for my children that are not a necessity and that they may not share the desire for. I always ask myself is this something he wants, and will this make him happy?

Just my thoughts on the topic of being "social."

Until next time,

Stefany

Transition

Well, baby Cole is 2 weeks old today, and he is fitting right into our family of 5. Luke and Lydia have been so good with him and very excited to have him around. This is a huge relief and answer to prayer because the transition with having Lydia was very different. Luke continually says he loves baby Cole and really wants him to sleep in his room. We are having to teach him about gentle and not to pick him up, but overall he is responding so well.

This has been one of the most challenging months we have had with Luke. So the fact that the transition to having Cole in the family is going so well, again, is a huge blessing. Why has this month been so challenging? As I may have mentioned in past posts, in July we moved to a temporary townhome after selling our house, 3 weeks ago we moved to a new house, and the next day we had to turn in Drew's company car and get another car, and then 2 weeks ago we had baby Cole. The car may not seem like a big deal, but to Luke it is huge. He gets very attached to cars and does not like change. One big characteristic of the Autism spectrum is often rigidity and an extreme aversion to change. Luke definitely falls into this category and is probably his biggest struggle. He is extremely bright also and remembers everything, so every little change does not go unnoticed ever. One way that Luke has responded to these changes has definitely been OCD behaviors such as hoarding, categorizing, increased stemming behaviors, and rigidity in daily functions. In doing certain things throughout his day, it has to be done in a particular order and the end result has to match up with the picture he has of it in his head. This can often be difficult for parents when we do not know what that picture in his head looks like and he is not aware that we do not know. The hoarding has come in many ways. He has even recently collected all of baby Cole's little toys into a certain place and order and has the idea that he is keeping them safe for baby Cole. He has also done this with Lydia's things.

In the new house, he has to be aware of everything that takes place. For example, when I was putting his curtains up he was not present, and when he realized that I had done it without him, there was a huge meltdown. The anxious kind.

Yes, there has also been an increase in the anxiety meltdowns that are reminiscent of a year or so ago. The only way I can describe this is it is like an "out of body experience" for him. He is not Luke during those times and he has no control (probably the lack of control is what sends him into these). There is nothing that can be said or done in those moments that will console him. Most of the time, he has to just tire himself out. The scary moments have been in the past month where he either tries to hurt himself or hurt anyone in his line of sight. He gets angry with himself for being angry also. He hates that he loses control and he has the awareness that it happened. Our dilemma over the past month with all the changes is how do we protect him? How do we teach him how to cope? How do we reach him during these times? As a therapist I have heard these stories from parents over and over. I have experienced them with my son as well. And now that he is older, it multiplies the emotional and physical toll by 100 percent. There is no easy answer on how to respond.

As much as possible we have tried to prepare him for the changes (through picture schedules, repetition, visits, etc..), have transitional objects that he can be excited about, and give him lots of verbal assurance and quality time. But even with as much preparation as we have done, change is still CHANGE and he hates it. That fact will probably never change. But our hope as parents to Luke, is that we can teach him, support him, and accept him for who he is with the hope that he will learn to be able to adapt successfully to changes that come his way in life because they are inevitable. That is my prayer for him. That is my desire. The hardest thing in the world for me as his mother is to see him suffer, to see him so uncomfortable in life at times, and to see him fight against the natural occurences that can bring him joy if he is able to cope with his anxiety. So the title of this post is Transition. This has been our life over the past month, and with it has come a lot of struggles. I see him settling into life a little bit more each day. That is my hope for him, to be HAPPY!!

How have your experiences been with transition in your family?

How have you helped your child overcome anxiety in transition and change?

Anxiety!

We are in the middle of the most tumultuous time our son has ever gone through. We are MOVING! We already moved out of our house and into a temporary townhome until we can move into our new house (which hopefully will be the last move for a long time). Most of our stuff is in boxes, we are disorganized, and in waiting mode! Our son has done better than I would have thought. It is also summer which is not always the best time for our son because the structure is a little lacking. Most summers, I plan out our days with picture schedules and talk a lot about our day, but this summer with the transition, I have not been as good as I would have liked to be about schedule. However, our son and daughter have been champs. We have stayed consistent with our sensory diet: lots of park time (for climbing, swinging), lots of water time (water table or our community pool), lots of running, weighted vests, squishes, and mini trampoline. We have been consistent with our morning and bedtime routine which has helped even when we were on vacation. We have also talked a lot about moving, walked through the house as much as possible, and talked about getting a turtle (transition item). Our son already knows his name will be tiny tim.

All of these things I think have helped tremendously, but at times the anxiety flares in different ways. For instance meltdowns and anxiety about where his belongings are. He has an excellent memory and will ask at different times where a certain item is, and if I can't show him it is very anxiety provoking for him. He also gets into sorting and categorizing the items he does have and often takes a lot of his sister's items into the mix. If his sister wants to play with her things, that can become another meltdown. Our son's meltdowns now at 4 1/2 consist of vein popping, completely rigid, tight, tense body with fist clenched, tears, etc... A look of panic comes into his eyes. His world that he is trying to control was just interfered with, and he wants it back the way he sees it in his mind that will bring him the most feeling of order and safety. This has been a problem for my daughter because she has gotten into the habit of just letting things go (she is very laid back). She doesn't really fight for things, so she took to just wandering around most of the time. (Siblings posts to come soon). So this behavior with all the transition has become very frequent. As I mentioned in the last post, his stemming behavior has also gotten more and more frequent throughout the day (whether excited or anxious) he slaps himself a lot and very hard. Redirecting this behavior has been hard this summer. Little changes have also been difficult such as sitting in an age appropriate booster seat. This has been a tough one. He wants so badly to hold on to his familiar seat. We have held out as along as possible but our son is freakishly tall and has outgrown his seat (meant to last well past now). However, we have a new baby coming in a few weeks, and we have made the change talking a lot about making room for his baby brother.

All of these things I can see from his perspective as ways of trying to right his world again, and we as parents have felt terrible that we have disrupted his world so much this summer, but in a way we can see how it is benefiting him to have to come to terms with the way life changes in ways. We are going to put his world back to normal as much as possible when we finally move permanently in the next few weeks. We will talk a lot about how well he did with the changes and celebrate his successes with him through a turtle or whatever else makes him feel safe and attached to his new environment. I am so proud of him for how he has responded. I can't say it enough. I see him growing and flourishing and become more familiar with the world around him.

In the book on page 21, Jake feels the same way about his home and safety. I remember last year, it was a miracle if we could get our son to leave the house. There was such a strong aversion to leaving his safety nest (his house). Look how far we have come! He is enjoying so many things outside of the house.

Have you had big life changes that have altered your child's world?
How did you handle these changes?

Until next time,
Stefany

Vacation!

One of the challenges we face with our son is going outside of our routine: i.e. Vacation! In the past we have had to head home after only an hour or two because of extreme anxiety and fear of the unknown (i.e. extreme meltdowns). We have learned a lot since then, but we still have challenges when it comes to vacation. We have been on vacation for the past week and a half with our family. In my book "I am Jake: My Life on the Autism Spectrum" I have a couple pages that share from Jake's perspective how his world is organized including preparing for vacation. On page 22, Jake's mom is using his picture schedule. This is something we use daily in our family, and has been a great help in preparing for change. It also provides opportunity for our son to have choices and control in some ways throughout his day. We use real pictures when we can because of his excellent memory. On page 25, Jake's dad is showing him pictures of where they will be going on a trip. We use this with our son way in advance of the actual trip. We began showing him pictures of the lake, lake house, boat, etc.. that we would be going to about 2 months ago. This time of preparation helps him to organize his world in a way that he can work through his feelings of anxiety and fear before we actually arrive. Now, this preparation does not eliminate his fear and anxiety by any means, but it does minimize it.

For example, on this trip we were going to be using a boat for the week. We talked about that boat for 2 months, watched YouTube videos of pontoons, looked at pictures of pontoons, face timed with cousins about the pontoon. When we arrived, we did not get the boat until 2 days later which allowed him time to see other boats on the water. When it was time to go pick up the boat, he did not want to go with the others. He wanted to stay at the lake house. I definitely gave him that option. We continued talking about using the boat throughout the day, and I saw his anxiety and fear trying to rise up. One thing that happens when he becomes anxious is his repetitive behavior increases. His repetitive behaviors is usually in the form of slapping his stomach. He did begin doing that. He also began saying "I want to take the boat back" over and over before it had arrived. I could tell he felt like he did not have any control of this unknown. This process went on for about an hour before the boat arrived. When the boat arrived, he said it was the wrong color and needed to go back. I gave him the choice of going down just to look at it while the others ate lunch. He walked down to the dock with me and and stared at it for a while. Then I began showing him the life jackets and told him he could pick his special one. He liked that choice. We stayed down at the dock for about 45 minutes just looking at the boat and exploring. We went up and ate lunch, talked about going on the boat (cousins were involved), and told him the plan for the rest of the day. We went down to the boat all together. I just watched him to see what he would do. He got on behind his older, adored cousin, and pointed out to her the life jacket he had picked out, and he began putting it on. He picked a spot on the boat and sat with both hands holding tightly to the railing, and didn't make a peep as the boat pulled out. I was so proud!!!!

In the past, without the 2 months of preparation, the 45 minutes of exploring, and the additional preparation we probably would have seen a much different experience. In the past without that, we would have brought him down to the boat on everyone else's time table and tried to get him on the boat with probably a reaction of extreme crying, running away, falling to the ground, refusal to go on, etc... I wouldn't have blamed him either. We then would have taken him back to the house and not tried again. He had so much fun on that boat. We have learned enough about him to know that he doesn't necessarily work on everyone else's time table. He does want to experience knew things, but when not allowed time for processing new experiences he shuts down completely. I loved watching his nervous excitement on the boat! He was able to do something that broadened his experiences in life. I am so glad we have learned this.

Now today we also tried to go to go to church with my sister while we are still here in Virginia. We did not have time to prepare him. In hind sight, we should have come about 30 minutes early to let him walk around the building, get his bearings, before we tried to have him sit in a completely new environment (different from his home church in Colorado). We did not do that, and we could not get him to come in until the last 5 minutes. He had so many tears and a look of panic on his face at the thought of going into this environment with new people, new chairs, new preacher, new music, new sounds, new smells, etc... He went into shut down mode. Some would say that he was being defiant, but we have learned differently over the years. He was scared, and we did not allow him enough time to process the change. So daddy stayed with him in the parking lot until he felt he could face the new situation.

So we have learned preparation, but it isn't always possible to do those things that help him so much. We can't plan out his entire day all the time and account for all changes, but right now at his age, we can certainly try to give him the time to structure his thoughts and world so that he will WANT to engage in life. Sometimes we won't be able to get him to that point and the experience will pass. But he is beginning to engage in so many more things on his own time, and if forced would have participated in none of it. I am thankful for the experiences that have taught me so much. My goal again for my son is that he will be able to become comfortable in his own skin and engage in life in his own way that brings him happiness.

What have your experiences been with vacation?