Saturday, November 17, 2012


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?

Saturday, October 27, 2012

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.

Thursday, September 27, 2012


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?

Sunday, September 9, 2012

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

Thursday, August 30, 2012


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,

Tuesday, August 21, 2012


Since I am getting ready to have #3 in 2.5 weeks, I was getting nostalgic and watching video from 3 and 4 years ago. I was watching video of before Lydia came along and after. I was amazed by the difference in Luke from before and after. I think as a parent we are constantly dealing with the present and not so much reflecting on the past. In my reflection, I saw Luke responding to outside family members and responding to commands so easily. I also saw some head rocking, social anxiety, and a little bit of him being in his own world. It was there, but with only one child I don't remember any of those things being in the forefront of my mind at the time. After Lydia arrived I watched him trying to navigate his new world with some anxiety. He spent a lot of time with daddy after our daughter was born for a few reasons. Our daughter had severe reflux and hardly ever slept which meant I did not sleep. She had a painful sounding scream of a cry that I still get flashbacks from when she cries now. She also was a high maintenance baby. She threw up like the exorcist a lot (with liquid gold) flying across the room at any moment. I don't remember much during that time, but I do remember that I did not get to hold my little boy nearly as much as I would have liked. In some of the video, I saw his amazing smarts coming out on camera. At 17 months we were reading a book together and he knew everything and spoke it as clear as a bell. During that time, my husband was also traveling a lot. He was gone for a 5 week stretch at the beginning of our daughter's life. I am sure my son's anxiety increased over my probably insufficient attempt at trying to juggle everything alone. It was about 6 months out of the fog that we began noticing how much our son's anxiety was keeping him from the things that were enjoyable in life. It was about that time and the year after, that he did not want to leave the house anymore. We noticed that he was lining up his toys and moving them from one place to another over and over. However, it was still not incredibly apparent to us (parent overcompensation) that he was struggling as much as he was. As our daughter got older, the differences were more apparent. The ease with which our daughter laughed, played, and left the house were the biggest differences. Looking back on that time, I remember many extreme meltdowns lasting for a couple hours with which my daughter would just step aside and do her own thing while I tried everything to calm him down.

She developed a pattern of just wandering around during these times which she still does quite a bit. I have some parent guilt about the lack of time I did not get to spend with her while dealing with meltdowns. I didn't read as many books, snuggle as much, or play on the floor with her as much. I can't change that now, and my son needed me too, but I still think about the effects that time had on her. She also has learned to imitate a lot of our son's behaviors. With interactions, she has watched him growl at people, run away, etc... She has also done that a lot. Luke has also tried to control Lydia's every move from the time she started walking. He has always taken her gifts away from her and categorized them in a way that none of us understand, and when she tries to play with her toys, he has extreme anxiety (full body tightening, vein popping, crying, screaming). She then would just drop it and begin wandering again. We have worked on this aspect soooooooo much, but we are still dealing with it. Lydia got a bunch of presents for her birthday, and Luke has been hoarding them for 2 months now. We have talked about it, put them back, found them in his room again, talked about it, removed some of his toys, put them back in her room, and so on and so on. I actually saw Lydia playing with her Rapunzel doll the other day, and I was a crazy woman trying to protect that time with her toy.

So the sibling thing has been a challenge to say the least. I understand from Luke's perspective why he struggles with control, and I understand from Lydia's perspective her tendency to disengage. She is very laid back and does not want the fight. She is also incredibly empathetic, and I know her empathy has been the best support for Luke. As she gets older, I can imagine that will continue to be a huge factor in Luke's development. Also I can imagine, that her speech delay has somewhat to do with the tendency to disengage. She was not willing to work at trying to get her words out.

The exciting things now are, Luke and Lydia have their own preschool classrooms where they can be independent from each other and have their own interactions. Lydia is already thriving after just one week. The time apart is good for them, and they will each grow in their individual environments. As we continue to work on their interaction together, I have seen Luke grow in empathy and love for Lydia (hugs and kisses that just started recently) probably learned from her example. I have also seen them play together without the control issues. These moments are growing in length. I have also seen Lydia begin to fight for what is hers. That may sound strange, but I love to see that. I don't want her to disengage from life all the time. I want her to fight when right for herself. I have also seen Luke become very excited about baby #3 coming along. I am hopeful this will be a much better experience for him this time around because he understands more and can formulate and prepare in his mind what is going to happen.

Overall, this is the family God designed for us all to be in, and He knew what He was doing. I put trust in that knowing that these little ones were made to be brothers and sister to each other. They will learn and grow from the personalities that they uniquely have, and they will have a unique experience that will help them in life's encounters and experiences. Lydia will have more empathy and understanding for others that may be a little different. Luke will learn how to love and show empathy for others because of Lydia. Time will tell what Cole will provide the family. I am excited to see. Through our struggles we have learned much, and we can celebrate the successes and the relationships forming in our family.

I will read "I am Jake: My Life on the Autism Spectrum" to Lydia and Cole when they are old enough to understand. Hopefully this will be one of many tools to have conversation to help them understand Luke's world a little more clearer. They will also be individuals that will spread awareness and acceptance in our community and schools for Autism. I can see them being an active voice for their brother. What an exciting thing! There is also a great article about siblinbs at this link

Until next time,

Wednesday, August 15, 2012

Good Article

This article titled "Raising Resilient Children" is a good perspective on how to focus on strengths instead of deficits. So many times we do that as parents, therapists, teachers, etc... At times, it is hard not to, but it is so important for a child to learn his strengths over his weaknesses. We all have weaknesses, but what is really worth celebrating are the strengths, successes (little, medium, or big). I ask myself continually how I can do that better as a mom and a therapist. In "I am Jake: My Life on the Autism Spectrum" I try to focus on Jake's strengths because he is an incredible boy.

How do you celebrate the strengths in your children?

Until next time,


Saturday, August 11, 2012

Occupational Therapy

Honestly, I did not know much about occupational therapy until last year. When my son underwent his developmental evaluation at Children's Hospital an occupational therapist also did an evaluation. She determined that he had fine and gross motor delays as well as a sensory processing disorder. I did not know what that meant at the time. Since that time I have become a believer in occupational therapy and have gained a lot more insight and knowledge into what it is. In my own terms, this is what it means to me. Occupational therapists work on functioning in daily life. That can include:
*Attention span and stamina
*Transition to new activities
*Play skills
*Need for personal space
*Responses to touch or other types of stimuli
*Motor skills such as posture, balance, or manipulation of small objects
*Aggression or other types of behaviors
*Interactions between the child and caregivers

But most importantly, our occupational therapist explained to us that our body's neurological system has a gatekeeper. The gatekeeper filters in and out all the input and stimuli to keep us functioning at a regular state. When the gatekeeper is functioning correctly, we don't even notice that it is working for us. The 5 senses (taste, touch, smell, sound, sight) are all funneled through this gatekeeper. So for exaample, a low buzzing sound at work doesn't bother me when I am trying to finish something because my gatekeeper is working correctly. However, children that have sensory issues (often with children on the Spectrum), their gatekeeper does not work effectively to filter these environmental stimuli the way that it should. Therefore, a smell, a buzzing sound, a light, a texture, a funny taste can all lead a child to elevate to a dysfunctional level. This can cause hypersensitivity that leads to meltdowns or an extreme reaction to something that seems trivial to all of us. Large crowds, loud noises, unfamiliar foods, etc... can all lead to these responses. And when the gatekeeper isn't working the regulation is very hard to achieve in those moments.

There are two opposites under sensory processing disorders. There are those that that seek out tons and tons of stimulus and input because they cannot get enough to regulate, and there are those that are hypersensitive to any stimulus and the tiniest stimulus can be too much and too overwhelming. My son often avoids stimulus; however, he still requires input in a regulated way (weighted vest, squeezes, pillow smashes, climbing). For example, when he would get overwhelmed by stimulus he would begin to throw himself to the ground to where his knees were incredibly bruised. He never seemed hurt by this, so he would do it over and over. However, now we have transitioned this behavior into other more appropriate behaviors to get the input that he needs. Now my daughter on the other hand, is a stimulus seeker all the way. She is constantly looking for input and doesn't avoid stimulus at all. Therefore, that is why we have had to watch her non-stop because she has no fear and no caution. She will try anything for input.

Since this explanation has been put into laymans terms for me, I understand much better how I can work to get my children to function at a regulated state throughout the day. We are still fine tuning the ins and outs of their "sensory diet" (stimulus input during the day) to keep them regulated. We are so much farther along than we used to be. It is an intersting science for sure. It has been amazing to see my daugher (who has a severe speech delay) talk more clearly after she has been in a swing for 20 minutes. Or to see my son sit at the dinner table with his vest on for an entire meal without it looking like he wants to jump out of his skin. It has been amazing to watch for sure.

Disclosure: I am not an expert occupational therapist nor do I have any education in occupational therapy. So my explanation is as a mother and there may be errors.

For more information, I like the explanation at this website WebMD

In the book "I am Jake: My Life on the Autism Spectrum" on page 19, Jake's mom is helping him to choose a sensory choice to help him regulate.

Have you found Occupational Therapy helpful in your family?
What are strategies you have used?

Until next time,

Thursday, August 9, 2012

USAAA Conference 2012

I am excited to say that the US Autism & Asperger Association World Conference will be in Denver, CO this year. Dr. Temple Grandin will be a keynote speaker. It is a 4 day conference that will provide a lot of opportunity for learning about resources, research, education, and more. There will also be a bookstore with book signings and individual book tables (I will have one for "I am Jake: My Life on the Autism Spectrum")! If you are near Colorado you should register to come to the conference. Last year I believe was in Seattle, and there were rave reveiws about the information acquired at the conference from educators, family, therapists, etc... Visit the USAAA website for more information.

Have you attended a conference like this?
How was it helpful to you?

Until next time,

Monday, August 6, 2012


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,

Saturday, August 4, 2012

Jake's blog is now featured at You can visit this site and click on Autism Resources. You can also Boost the blog by clicking on the Boost button next to the blog. Jake's blog is also now on Autism Blogs Directory

I am so excited to have more opportunity to discuss experiences, interventions, and topics with the incredible online community. I am checking into equestrian therapy right now and will be posting soon about what I find out.

Until then,


Sunday, July 29, 2012


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?

Friday, July 20, 2012

Our Journey Part II

So after we received our son's diagnoses of Autism Spectrum Disorder, Anxiety Disorder, Receptive speech delay, and sensory integration disorder, we began the process of finding the right fit for our son to receive intervention. There are so many "therapies" out there it seems to choose from, but when we actually were investigating all of our options they seemed limited. Our son did qualify for 4 days of preschool with all intervention services provided (OT, speech, behavioral intervention, social skills) in the classroom. Our experience for the past 2 years has been amazing! We are fortunate to have a group of therapists, teachers, and specialists that I can obviously tell have come to love our son. He goes to his preschool class 11 hours per week. He has thrived in this environment. We have had some setbacks with some changes that brought about some regression in the classroom, but the team has intently focused on those areas with my son.

The world of private interventions was even more difficult to navigate. As I have said in the previous post, I am a therapist that works with Autism Spectrum Disorders. I have given many families resources for intervention. When I began navigating this world of insurance, etc.. I found it daunting. Our insurance happens to be self-funded which means it does not have to follow state mandates for mandated services. For example, ABA therapy in Colorado is supposed to be covered (mandated) by insurance companies; however, our insurance because of the stipulation above will not cover any of it. ABA was the top recommended intervention for our son. I had done a lot of research into the different therapies, and at his age and developmental level, it seemed like our top priority as well. However, without insurance coverage we were looking at 2,000/per month private pay. Who can afford that? So I looked into several other options, child specialist counselors, programs, etc.. I have not been able to find a good fit for my son on the individual level yet. Then someone mentioned to me about an ABA certification program at University of Colorado/Denver. I looked into it and decided I was going back to school to learn the therapy/intervention that is backed by research and effectiveness. So I am in school again.

In the midst of that whole process, I began taking my son to occupational therapy. I never knew much about OT until we began. It is an amazing therapy that focuses on the neurological system and regulation in order for a person to participate in daily functioning successfully. My son and now my daughter have benefited so much from their "sensory diet." Click here for a short description.

We have also began looking into other developmental therapy models and found the Rocky Mountain Autism Center. They work from a SCERTS model. We are beginning this in the Fall. They provided group and individual therapy. The individual therapy is great because the desire the family to be included in all sessions (even siblings).

And then there are the things we have been implementing in our home to help our little guy be more comfortable with life. We have implemented picture schedules, teaching play dates (with our very supportive friends), structured outings with lots of preparation, etc... "I am Jake: My Life on the Autism Spectrum" has some of these things included in the book.

So for the past almost 2 years we have been trying our best to navigate the early intervention world. My husband and I are always questioning the balance (how much to be doing at one time, Not enough vs. too much). It is hard to determine. We have read the research on the success of early intervention for long term adaptability, but in the day-to-day it is still difficult to balance.

What has been your experience in navigating the therapy world with your child? I would love to hear from you!

Saturday, July 14, 2012

Our journey Part I (My Inspiration)

One huge advantage I have found in the Autism community is the strength that comes among those that are able to share their journey along the way. One of my biggest inspirations for my children's book was to share my story in a way that can also make a difference but also to connect with so many more families on the same road. So in sharing not only my book but also our journey, I feel the strength that comes from the community of families working together to make a wonderful life for their children. Please add to the discussion! I would love to hear from you and your child!

Our journey started about 2 years ago. I began noticing some different behaviors in my son that were increasing. After a very hard few months with my husband traveling a lot, several severe episodes, and increasing anxiety the conversation began between my husband and I about looking for help. Our first course of action was to go through the Child Find evaluation. Child Find is our early intervention program through our school district. The whole time before that, my thoughts ranged from: "they are just going to say he is a strong-willed child," "no need to worry, he just has a different personality," etc... I did not think he would qaulify for services for sure; however, only after about 30 minutes into the evaluation, one of the evaluators brought up the question "have you considered testing for Autism?" the unfortunate part was that my husband had an out-of-town business trip which he had to leave for half way into that evaluation. Therefore, with 2 kiddos in tow, I had to receive their feedback by myself while trying to keep the kiddos entertained. I am a therapist that works with children on the spectrum, and yet it was still so difficult for me as a parent to see the things that were apparent to others. In the back of my mind, these realizations came when my second child was born. They were such different children in behavior and personality.
These things prompted me to go through the Child Find process, but I still did not think I would hear those words. After receiving that feedback, hearing that my son would qualify for preschool with OT, speech,and behavioral intervention, we embarked on the testing journey.

I work for a clinic that provides developmental testing, so I knew the process. However, it was still daunting. There are only 3 facilities in my area that do developmental testing with private insurance. Children's Hospital being one of them, but I already knew they had an incredibly long wait. We waited for 7 months to have an evaluation. It was difficult sitting through the testing with my son, because I could see how uncomfortable he was with strangers, the demands of the tasks, and his unfamiliar environment. I wanted to rescue him from the demands and his anxiety. I have learned over the past couple years, that I am completely normal in my desires to rescue him, but the balance comes when I strive to help him become comfortable within himself through the things that life brings along. That means I can't always rescue him, but in a way when I provide him with opportunities to grow and adapt, I am still rescuing him just in a different way.

After receiving the feedback and 3 diagnoses, I was overwhelmed. Working in the field, I understood everything they were saying to me, but it was still difficult to hear. The questions started coming all at once in my mind. How can I help him? What do I need to be doing? What have I been doing wrong? So we began as a family to educate ourselves even more and begin to find the best intervention for my precious gift of child, my son. But one thing rang true and still does today. My son was the same precious little boy yesterday as he was the day we received the label. The label only helps us to understand him better and learn ways in which to reach him from his point of view in the best way possible to help him to adapt and grow as who he is!

Friday, July 13, 2012

You can now purchase "I am Jake: My Life on the Autism Spectrum" at my seller page listed below (click on the title below)and on the sidebar! Thank you for your support.

I am Jake: My Life on the Autism Spectrum

Tuesday, July 10, 2012

I am Jake soon to be for sale!

My family began a journey almost 2 years ago with my son Luke to find out how we could help him. Last year he was diagnosed on the Autism Spectrum with PDD NOS and also an anxiety disorder. In addition, he struggles with fine and gross motor delays and sensory integration. Through the past 2 years he has received remarkable treatment and services through Child Find as well as private therapy. He is making progress every day. Progress to me means that he is becoming more comfortable in his own skin, and he is beginning to enjoy life more in his own way. Through this journey, a year and a half ago I began writing a story about his unique personality and amazing character. It turned into a children's book to have a conversation with my child about the strengths and struggles that are a part of his life on the spectrum. I am also a therapist that works with children with Autism Spectrum Disorders and their families. Many of the children or adolescents I see wonder what makes them different. Many of the families I work with look for a way to have that conversation. I, as a therapist, also look for ways to educate and have that conversation with children in a way that leads them to be empowered through their difference. That is where I hope "I am Jake: My Life on the Autism Spectrum" will help. Through our journey with Luke we have implemented many strategies in the home that have helped my son with his aversion to change and anxiety to anything new and many other struggles. Some of those helpful tips are in the book. I can't wait to share it with you. My mission is to spread education and awareness that will lead to support and acceptance of children and their families on the spectrum.