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

Christmas is over, back to routine!

Christmas is such an exciting time! Everything is different and festive. Decorations are everywhere, Christmas tunes dominate the radio, Christmas trees go up in the house, and presents start filling up under the tree. This time of year most everyone loves, but for a child on the Autism spectrum the changes can be overwhelming. School is out and everything is different. This year our family had a low key Christmas. We usually have family in town or go out of town. We always have a flurry of activity. This year we had 2 events that my husband and I were a part of at church. However, this year we strived to involve and prepare our children as much as possible in the activity. Usually we just cart them around for the events. This year we involved them. For example, our church sponsors families for Christmas. Well, we had the children help us pick out the gifts for the children. Our Christmas concert that my husband and I do most of the music (in addition to our Awesome piano player) has practices. This time we involved the kids in the practice. For Christmas decorating, I gave our son specific tasks. He did fixate on certain objects and hid them for the remainder of the month, but he enjoyed getting involved. I think these things made a big difference this year, and we did not have one meltdown! Huge, Huge, Huge! We maintained somewhat of a structured day with therapy that we still attended throughout the week and activities at home. The biggest thing I noticed this season was my son's intensity level. About 3 days after Christmas, his intensity was maxing out at 150 percent. When I say intensity, I mean his jaw is clenched most of the time, he sprints the length of the house again and again, he does somersaults, tries to hug and pat the baby too hard, hugs his sister with major force, can't sit still, and slaps his stomach really hard. This could have been a combination of several things: the snow and freezing temps preventing much outdoor play, he was sick, and the change of structure. As school is now back in session, structure has resumed, his sensory diet is back in full swing, and he is healthy, he has began to even out again. His biggest strength and growth has been how I have noticed him trying to self-regulate. He is not always successful, but I can see him trying. We had a wonderful Christmas (besides illness), but I can almost tell he loves that things are back to routine. Just like Jake in "I am Jake: My Life on the Autism Spectrum," Luke loves to have a schedule!

How were the holidays for you?

What did you do to try and maintain structure?

Until next time,

Stefany

Thankful!

As Thanksgiving approaches, I am reminded of where we have been as a family, where we are right now, and where we are going. Lately, our family has been in a really good place and I am THANKFUL! It has been a little over 2 months since we moved, Cole was born, and we had to get a new car. All of these things started a period of time with tumultuous behavior for Luke. He was really struggling. I talked about this in previous posts. Now we have entered a good place. I just had both my children's parent-teacher conferences for preschool. I was thrilled with what they were telling me about Luke. They have seen him now for a year and half in this classroom with this group of specialists. They raved about his interactions, his anxiety being decreased, and his overall lovable personality. Their biggest goal at this time is that he prefers to talk to adults and will continue to seek out a conversation repeatedly even if the topic needs to be focused on something else. I WILL TAKE THAT GOAL! They felt that he tends to talk to adults because he gets the desired response and attention and the adults understand his articluate thoughts much more than his peers. I genuinely enjoyed listening to all the things they had to say and was saying a prayer of thanks for all the progress he has made. I see his personality all the time, but others were not seeing it until this year.

I am so thankful for his team of teachers and specialists. They have been a HUGE part of Luke's progress and growth. They have given me so many good ideas, and as they said at his conference, we have worked together as a team for the growth of Luke. I know this is not the case for every family to have such a great support team. I urge those parents to advocate for what they know is best for their child no matter what. It is tiring and exhausting and can seem hopeless at times, but it is worth every ounce of early intervention that can be had.

Luke is blooming and it is so fun to see! He is in a good place with his anxiety as well. His routine and structure being consistent always helps him to thrive. It is a challenge for me to implement day in and day out (I will not lie), but when I see the results it helps me to push on. This week we had a couple days where I was tired and not able to be as structured as I wanted to be, and I saw the difference in our day. The difference is not as drastic as it used to be but it is there. It is there in the behavior, anxiety, and outcome of the day. But each day is a new opportunity to help him structure his world in a comfortable way, and I will keep taking the challenge head on.

I am thankful for these times, and I want to be sure to enjoy every minute of the blessings that come from calm periods! How am I doing that? I am being inquisitive into his little mind as much as he will let me in. I am stealing lots of hugs and kisses. I am sitting with him and just watching his mind at work. I am entering his world as much as I can. In I am Jake: My Life on the Autism Spectrum I included the page where Jake's dad enters his world to play helicopters with him and use his imagination. I love that image!

How do you treasure the times of calm?

How do you enter your child's world?

The Mystery of the Autism Spectrum

What I am finding more and more as I talk to people, is that the general public does not have a very clear understanding of the Autism Spectrum. I find that most people's reaction to those with PDD NOS or Aspergers are that they classify all under "Autistic." Now labels are just that labels, but with labels in the general public comes stereotypes and misunderstandings. Often those like my son are thought to be Autistic or people question that he is on the spectrum at all. Often the misunderstanding is that either he does not display typical symptoms or that all his symptoms or behavior are because he is "Autistic." Most of the time neither are the case. I have heard the same from many parents with children on the Spectrum. The battle for awareness and understanding always seems to be there. The misconception of bad parenting or behavior instead of understanding of Spectrum issues. Every child on the Spectrum is unique and different. Not one can be put into a box.

The media has recently put so much more information out about the Austism Spectrum through characters in shows such as Parenthood with Max. Max has Aspergers, and the show does a great job portraying the similar struggles and strengths that someone with Aspergers goes through. However, that is not everyone with Aspergers. The subjective nature of the Autism Spectrum creates in itself a lot of misunderstandings and misperceptions.

As of right now the Autism Spectrum generally consists of 3 diagnoses. There are others that are more rare. However classic Autism , Aspergers, and PDD NOS each has its' own set of criteria that are similar in nature. The distince differences are what differentiates between such as speech delays and having 1 or more of repetitive behaviors, social delays, and restricted interests to varying degrees. This on a whole is not understood.

In addition, in 2013 the Diagnostic Statistical Manual (DSM V)is coming out with new criteria, that as I understand it is lumping all 3 of these under the Autism diagnosis with varying degrees of severity. This will create more confusion to the general public. Because for a long time the 3 diagnoses tried to distinguish themselves from each other will now fall under the same name. Here is a relevant article to read on the topic.

Does all of this matter in the grand scheme of things? Well, yes and no. In our family our main goal is to nurture and support the unique personalities and strengths of each of our children. Does that need a label? NO. What does the label do for our family then? It helps us to understand our child better from his perspective. It helps us push to educate ourselves and advocate for him more. Is it different from our other children, slightly, but the goals are the same. God made each of our children uniquely, and each of them is who they are meant to be. We continually will fight for each of our children's best shot in life.

The label also gives us a reason and a purpose to help educate others in the general public. This pushes us to educate them so that others will understand and accept the uniqueness of children on the Spectrum. It helps us to encourage those around him to not just put him in a box, but to reach out and try to understand who he is not just that he is on the Spectrum. He is a person with a personality, with strenghts and weaknesses just like the rest of us. They may call it a disorder, but there are a lot of disorders in the world. Everyone will be labeled in some way. It is up to us as parents and as a family to make sure that label does not define all of who he is. He is an amazing, special, unique, funny little boy with the world ahead him. I am not going to let the label limit him in any way but for him to use it as a strengthening characteristic that makes him even more able to overcome obstacles in his life.

Our mission is to spread support, awareness, and acceptance of Autism Specturm Disorders. Join in! Get to know those around you in your community. Take an interst, have a conversation. It isn't so scary once you get involved.

How are you spreading awareness, support, and acceptance in your community?

"I am Jake: My Life on the Autism Spectrum" supports this very converstaion. What is an Autism Spectrum Disorder? Is everyone the same? From one boy's perspective (Jake's) ASD celebrates strengths and supports weakeness in a way that helps him overcome obstacles.

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?

New baby on the way!

I am having number 3 in 2 days, so I can't promise I will be posting all the time. However, I will try to get back on here soon. I am excited to meet Cole, and at the same time I am hoping that Luke and Lydia will be just as excited. I know it will be another big change, but we have talked about it so much. I am going to set the precedent that he is just a part of the family and fits right in. I am going to take as much one on one time with Luke and Lydia that I can too.

How do you prepare for another addition to the family?

Until next time,

Stefany Gess

Hippotherapy!

We have recently began hippotherapy at Connections Therapeutic Riding Center. Both my son and daughter are attending an hour session per week. Last week, was their first time, and my son loved it. I think my daughter loved it too, but she had several meltdowns trying to exert her will. The therapists were very calm and patient with her, but required her to calm her emotions. She was able to do that with their direction. They were both completely exhausted that night and the next day. This is apparently the "detox" portion after a new experience that is both physically and emotionally draining. This week they both did even better. Luke was tired about halfway through, but he pushed through his wall.

I have already had a lot of people ask me what hippotherapy is. The facility that we attend describes it this way:

"Hippotherapy has been shown to be one of the most efficient and effective treatments used to improve posture, balance, mobility, and function in patients with motor disorders.

In hippotherapy, a specially trained physical or occupational therapist properly positions the patient on the horse, analyzes the patient's response and directs the horse's movement to achieve specific patient treatment goals. The horse is used as a unique treatment modality in conjunction with traditional therapies. As the horse walks, its center of gravity is displaced three-dimensionally with back and forth, up and down, side to side, and rotational movements. The horse's movement has a therapeutic effect on the patient with a precise, repetitive pattern of movement very similar to the movement of a person's pelvis during normal walking. Additionally, the movement of the horse produces sensory input to the brain and the nervous system of the patient.

Major aims of hippotherapy include mobilization of the pelvis, lumbar spine and hip joints, normalization of muscle tone, development of head and trunk postural control and development of equilibrium reactions in the trunk. In fact, improvement in postural control and trunk equilibrium reactions can be achieved more easily on the horse than in the clinic. The horse's rhythmical movements transmit symmetrical sensory input to the patient in a way that cannot be imitated by a mechanical apparatus or with any degree of consistency in the traditional occupational and physical therapy clinic. Therefore, hippotherapy offers an alternative and valuable adjunct to more conventional treatment modalities."

There is something about the horse that I saw visibly allowed Luke to let go of his anxiety. It was the neatest thing to watch. He still had a tendency to be anxious at times when they wanted him to do something out of his comfort zone, but he tried things he would have never tried before. He is connecting with the horses, and I can't wait to see what this will bring about in his development. Lydia is already being pushed to use her words in a sentence. She does not have a ton of words, but they are getting them out of her. As much as she would like to protest, she loves it. I will update you all on their progress soon.

Until next time,
Stefany