Tuesday, August 21, 2012

Siblings!

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,
Stefany

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,

Stefany

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,
Stefany

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,
Stefany

Monday, August 6, 2012

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

Saturday, August 4, 2012

AutismBlogs.org

Jake's blog is now featured at AutismBlogs.org 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,

Stefany

Sunday, July 29, 2012

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?