Bryson's Progress

One of the reasons I started this blog was to share my thoughts and feelings about having special needs children, one with health needs and another with psychological needs. I hoped by putting these thoughts into words I might help someone else someday that is walking a similar road. Unfortunately, I don't do a very good job of keeping those updates coming when things are going so well.... Here is a long-overdue update about Bryson.

I heard a few weeks ago that the term, "Aspergers Syndrome" is no longer valid, and kids with those symptoms are now part of the umbrella of "High Functioning Autism". Doesn't really matter to me, the diagnosis a few years ago is what got him the help he needed, and getting him the help he needed made him higher functioning than I thought possible.

On October 13th, the day after his 11th birthday, he was officially released from his occupational therapy, having met all of the goals we created with his therapist, and no other new concerns or deficiencies presented themselves. We were excited and so proud of him for accomplishing so much in just over a year. He was sad about not going to therapy anymore, because he loved Tonja and loved learning and practicing his new skills. She gave him an hour of undivided attention and listened to him talk (greatly encouraged him, really) about his day, his worries, his successes, and his preferences as she worked on strengthening his muscles, balance and coordination. It was kind of hectic for me, going every other Wednesday for over a year, but Bryson and I really enjoyed our alone time in the car driving there and back for each appointment. Sharing that time together was pretty special for both of us and we loved to talk about and celebrate his successes (always with an Arctic Circle ice cream cone on the way home).

This TumbleForm "Swing" was one of Bryson's favorite things. He nicknamed it "Tumbleweed" because it reminded him of a horse and he tumbled from it often! He also loved throwing the medicine balls into the small trampolines to play "bounce back". He got pretty good at it and could catch the heavier one while standing on one foot. By the time he was released he had learned how to tie his shoes (again), throw and catch with one hand, and how to skip, hop, and climb. He climbed up a rope ladder and a rock wall, and loved being up so high. (He was so afraid to climb even 2 feet off the ground when he started his therapy.) It was absolutely amazing to see the confidence grow in our little boy in just a year. I think being successful and getting stronger, plus having something to do that was all about him, was so good for him. Tonja always talked with me, too, giving suggestions with his sensory issues, resolving the frustrations at home, and offering new ideas for school and homework. She said once that she loved having him for a patient because his parents were engaged in his development and his therapy continued with us at home. Why would we not follow her suggestions and reinforce her teaching? Oh, how we love Tonja, and will be forever grateful to her for teaching us what to do to help our sweet, special son. He's a different kid than he was a year ago...confident, comfortable, successful, and even happy!

We also love our special eduction teacher at his school, Mindy. Like Tonja, she does her job with such loving care and concern that it doesn't even seem like she's doing a "job". She called me a couple months ago because she was concerned about Bryson's math scores, and we met for over an hour to talk about that and some frustrations with homework we were experiencing at home. (Because of his diagnosis, he has an IEP and accommodations at school to give him the added support he needs to be more successful. He attends a charter school whose philosophy is that when children are in a safe environment with accelerated learning opportunities, they will rise to the challenge and excel. It's a philosophy that works, even for kids with learning challenges. He still struggles at school, but is getting the help he needs to understand concepts and actually catch up to where he should be.) He was struggling specifically with the tasks of completing his 12 or 13 math problems each day and putting his spelling words in ABC order. It just took FOREVER...(like until bedtime). Well, we went back our 3rd and 4th grade method of having his math problems transferred from the book to the paper for him, as it seems that he was getting lost between the book and his work several times for each problem. And I think she's brilliant with the alphabetical order thing.... Bryson is a tactile learner. If he can manipulate it, he gets it. So, deciding he could show his understanding of the concept with 10-12 words just as easily as with 20, she started making him 10 word cards for him to manipulate until they're in order and then just write them down in a list like he has them placed. Pretty smart, huh? I never would have come up with that! Anyway, he also goes to early morning study hall at 7:15 three days a week to have someone help him correct and fix his math assignments. These accommodations alone has reduced homework time from 4 hours (not kidding) to about 1, and he works independently at his desk in his room, is self-motivated, successful, and again...happy!

I am so grateful for the people in my sweet boy's life that have helped us help him. I can't imagine how frustrating life would be to have a brain that processes things differently from the rest of the world (or so it seems) and not be able to understand why things are so hard and uncomfortable all the time. Oh, how I love my sweet little angel boy, with his happy, forgiving, loving disposition. And how grateful I am to have found help through the suggestions of loving teachers, doctors, therapists, friends and family.

That's Progress...

One Saturday, a couple of weeks ago, we had one of those days where we went from one thing to another and then I crammed Halloween costume shopping into all the little spots in between. I picked up Bryson from a birthday party, where he had a wonderful time. Then, instead of going home, we parked at the church parking lot. Our family was assigned to clean the building that day, and were already late, so I just planned to meet Steve and the other kids there. Well, I had forgotten to notify my son that we had other things planned for his afternoon, and this surprise really didn't sit well with him. His Asperger's responses kicked in and he asked in a pretty angry voice, "What are we doing here?" I answered that we were there to clean the church. He folded his arms, glared at me through his knit eyebrows, and said, "You didn't tell me. I'm not going." Well, I tried not to stay calm, and just apologized for forgetting to tell him, and told him he could stay in the car, but we were here until the work was done, and I was going in to help. I locked him in, and went into the church. I secretly checked to make sure he was safe out there, but he sat like that for quite some time.

After a while, I saw him slink into the building and with an embarrassed smirk on his face, he told me he had to come in to go to the bathroom. After he was done, he stayed and helped clean the bathrooms and vacuumed. On the way home, I thanked him for his help and as I put my arm around him, I asked, "So, was that really so bad?" He looked down at his feet and said, "No, Mom. I was wrong. It was okay. Sorry." We talked about how good it makes you feel to be helping others and showing our gratitude for the nice church we have to meet in. It took me a few days to realize how much his simple admission must have cost him, and how much it really meant. He admitted (without my prodding or "guilting") that he was wrong and that he was sorry for his behavior. He recognized that it was not acceptable, and not the correct way to respond to that situation. I know he was frustrated, and probably had much different plans for his day. I should have remembered how important it is to prepare him for those things. But I was so impressed with his thoughts during our short conversation in the car on the way home. I think that's what I'd call progress.... Boy, I sure do love that kid!

Life After the Diagnosis

It's been about 8 months since Bryson was diagnosed with Asperger's Syndrome. Some days I can totally forget that there's anything different about him, and think we were hasty in seeking a diagnosis. Other days, I'm so grateful to finally have an explanation and some tools to help us be able to help him through this adventure we call life.

After waiting forever for the doctor to send referrals and get appointments set up for us with therapists, we finally bypassed him and with the help of his nurse, we started some therapy. Bryson went to his first Occupational Therapy appointment in August, the week I was gone to girls camp. Steve took him in and they started the assessment process. His therapist is a cute and sweet girl (probably in her late 20's) named Tonja. It is so fun to watch how she interacts with him. At their first appointment, she told Bryson that she loved his name and when she has a little boy, she wants to name him that. (Her last name is Brown, too.) Bryson beamed. Through the evaluation, we learned that there were some things that she can help us with, mostly related to gross motor skills and building the large muscle groups. She gave us some tips to deal with homework time and some information about Sensory Diet and how to help him with his sensory needs. There is so much to learn. First, we let him go outside and jump on the neighbor's trampoline for about a half hour. She taught us that since he's spent so much time at school trying to focus, he's probably really burned out and needs to use his large muscles to kick his mind back into gear. Through the sensory information, we also discovered some music that he loves to listen to with a steady quick rhythm to keep him going at a reasonable pace.

The miracle occurred after the first week of school, and now homework time isn't nearly the nightmare it was last year. It still requires preparation and focus on my part, but we've made significant strides. I'm not sure if it's the maturity I've seen developing in him, the new desk arrangement for homework time, the "homework helpers" (small reward treats), the beat of his new favorite music, or the exercise prior to homework time, but something (maybe a combination of all of it) has clicked, and he works hard until the chore is done. He works so much more independently and sticks to it until we can sign it all off. I can tell that he's really trying and I tell him almost every day how much I appreciate his hard work and amazing focus.

About 5 weeks ago, we went back to visit the psychologist to talk about some therapy that the pediatrician recommended to help with stress management and relaxation techniques. He refereed us to Renee and we started seeing her, too. She assessed the needs based on his original diagnosis report, and the things I shared with her, and by observing and talking to Bryson. She's already taught him some breathing and relaxation techniques (using sensory reminders) that will help him be more "grounded" and focused for homework time. We haven't had to use them yet, but she taught them to me, too, so we could do them together. She spends time with me (or Steve) alone, or with Bryson, to discuss issues that come up and offer ideas and insight to help us better deal with the hard situations.

At our last session, she taught me the importance of focusing on praising his effort, rather than the whole. We had a situation during that week where I was correcting some of his spelling and the "criticism" was just too much. He shut down. When I got him back and talking to me, he told me that he felt stupid and hated that he makes mistakes. I realized at that moment how damaging my "help" was to him, but was worried also because I don't want him to get his homework back with everything marked wrong. I can see how damaging that could be, too. So, I asked Renee how to help and correct him without criticizing. She told me that in our society we focus on the end result as being "good" or "bad", "right" or "wrong" and that for kids like Bryson, he needs to know that each step of the way is a battle he is winning. She suggested that I praise his straight lines, nice handwriting, or the creative sentence and then ask him if he can see something that's not correct in the sentence (or problem). I tried it the next day, and realized how turning it into a game, and having him find the mistakes himself was a much better way to help him learn. I also realized in our discussion that his very literal mind hadn't completely grasped the "rules" or concepts in the assignment. The assignment was to "choose 7 spelling words and write 7 sentences." To you and I, that also includes application of the understood rules of proper grammar, spelling, capitalizaiton, and punctuation in those 7 sentences. Yet, every sentence he wrote started with a lower case letter and had misspelled words (including his chosen spelling words). It's amazing what you can learn when you step outside of the moment and look at things from an AS mind. We approached that and a couple of other issues with his teacher in his IEP meeting.

We had the IEP (Individual Education Plan) meeting a week or so ago. We feel so blessed that he is able to attend The Academy, where the environment of the school already addresses much of what Bryson needs. We brought up the thought of giving speific guidelines to each assignment and the teacher agreed that it would probaly help all of her students to have that reminder. We talked about having short-term assignments written out for him to better pace himself with the long-term assignments. His special ed teacher suggested that homework shouldn't take as long as it does, so we also made accommodations for his math homework (when appropriate) to be written out for him, so he can focus on working the problems rather than the transfer of information. He also gets to do his "mad minutes" math facts with flash cards instead of on the paper for the same reasons. We also talked about how note taking is so tedious for him with this stuggle between transfer and processing information and asked that a copy of the teacher's notes be provided so I can help him at home to make sure he has all the right informaiton on his study guides and worksheets. He will also be receiving OT at school once a week to reinforce the activity goals that Tonya has begun.

I'm so excited about the progress we've made, the special alone moments and talks I've had with him driving to and from therapy, and the much-needed help we're getting for him and us. I feel like things are moving at a nice even roll now, and that we have many more tools and resources to help us work through the bumps. He's such a special kid with so much to offer and I love him and his special little self sooo much!

What are we gonna' do?

Ya' know, that's a very good question.... I think we have a plan now, but it seems like an eternity waiting for the doctor to follow through.

We went to visit with Dr. McInturff, our pediatrician, a week or so ago about Bryson's diagnosis and the report from Dr. Christensen. As we talked about Bryson's needs, how he responds to our help and guidance, and what the immediate struggles we face right now with his Asperger's Syndrome are, we began to formulate a plan. First, we talked about the ADD, and that it is most likely a by-product of the AS. His doctor thought that we should hold off on medication, until we try some other things first (Yea... We really weren't comfortable with what to do about that one.) We brought up the possibility of changing his diet, thinking that maybe dyes and chemicals in processed foods may be causing some of those issues for him. His doctor agreed that the more natural and whole the foods are, the better they are for all of us, and said it wouldn't hurt to try that. But because he's already such a tiny, skinny kid, and a pretty picky eater, he cautioned us about taking away too many things he will eat. We decided that because we're so close to summer, and the ADD probably won't be so prevalent when he's not involved in school, he recommeded furter testing and some occupational therapy to help him learn how to deal with the AS issues first: the over-stimulating environmental experiences, texture sensitivity - like scratchy clothes, being able to focus enough to do things he doesn't want to - like reading, memorizing things like his address and phone number, and so on. He also recommended some counseling. When he mentioned this, I kind of chuckled and told him that I thought WE were the ones that needed counseling. Sometimes we feel like we're doing all we know how to do, and it's still not enough. We need to meet with someone who can help us take this stuff to the next level and figure out how to reach and help him when he's having an "AS Moment". He smiled, and told us that that's what he was thinking...that the counseling would have a family spin on it, so it would be able to help him, and at the same time, help us help him. He said he'd contact Dr. Christensen and get those referrals taken care of.

Ahhhh.... Well, it felt good to talk about our next steps, and start a plan in motion, but it was kind of frustrating at the same time. I don't feel like we're much farther than we were a month ago, but I know these things take time. I'd really like to get some serious help this summer so we can see some progress before school starts again. It's just so hard to wait. When it comes to my kids and helping them find success and happiness, I'm really not very patient. I might have to call the docotor tomorrow and see where we're at. And then, most likely, wait again!

The Diagnosis

A few years ago, when Bryson was in kindergarten, we became aware that he had some special challenges and was struggling (mostly socially) at school. Before that, he was tested and diagnosed as having a "developmental delay" and enrolled in the school district's early intervention preschool to help him catch up academically and be ready for kindergarten. He liked going to school, but struggled with the separation and anxiety associated with that. In first grade, we suspected that he still had issues that needed to be addressed. As we read and researched the symptoms of Asperger's Syndrome, I felt like I was reading books and articles written about my little boy. We had him tested at his new school (the Academy - a charter school which he loves and thrives in) and although we didn't get doctor's diagnosis, the tests showed that he had a high probability of having AS. We read and researched some more, changed some of our behaviors and how we talked to and dealt with Bryson. We learned how to work with his special needs and rigid routines, giving him plenty of help with daily transitions, space to be alone, and stopped making him do things on our terms. Things seemed to get better, and Sarah's health started getting worse.

Here we are, now, in 3rd Grade. He still loves school, but hates reading, writing, spelling, math, and basically anything he doesn't want to do. Bryson's teacher is very concerned about his lack of attention and that he's falling behind the other kids in school. We also fight daily with focusing and getting him to complete his hour's worth of homework in less than three hours. So, we finally focused our attention back on our special boy and took him in for a physical. His pediatrician explained to him that we needed to meet with his friend (Dr. Christensen, a child psychologist) so we could learn how his brain worked. He told him that teachers usually teach all kids the same, and sometimes, some kids' brains work differently. If we could find out how his brain works, then the teacher will be able to help him learn in the special way he needs to and learning will be much easier, and more fun. Wow! He was actually excited. I almost think he knew something wasn't really working, and was actually relieved that somebody noticed that he wasn't really getting what he needed.

After hours of testing and pages and pages of surveys, we've finally got a diagnosis for our sweet little Bryson boy. The doctor has concluded that he has an Attention Deficit Disorder and Asperger's Syndrome. The attention deficit could be caused by the AS, but we really can't tell unless we try to treat the ADD and see what happens. We've received recommendations from the doctor about what he thinks might help as far as therapy and treatments, but we haven't made any decisions or met with his pediatrician again to even begin to decide what to do for him. I've begun re-reading a book that was really helpful a couple of years ago, and it's given me a lot of insight and ideas of how to help him right away.

He's so sweet and so talented and so smart... I just want so much for him to be happy and successful. I hope and pray with all my heart that we can help his challenges become strengths and he can grow into the amazing, talented and smart husband and father I know he has the potential to be. I also hope and pray that with the other challenges in our lives, Steve and I will be able to help all of our children feel the love we have for them, gather strength in our faith, and work together to keep our family strong. We've got two children with very special needs, and three others that need us to be there for them, too. So many times, struggles with children that cause stress pull families apart. I can see how that would happen, but we promised each other and God a long time ago that we'd never let that happen to us. We're strong when we're together, and with our hands in His, I know we'll be able to make it.