School report on Brycen's IEP goals

We received Brycen's report from school today about his progress on his two goals for the year. The year (36 weeks) is divided into 4 quarters, so the second quarter ended in December. We knew how great he was doing, but never guessed it was this much!
The first goal is on communication and is broken down into 3 categories: (A) Makes needs, wants and dislikes known, (B) Demonstrates Comprehension of Classroom language, and (C) Making Choices. Each category has 4 steps he is working on mastering by the end of the year. He has currently mastered the first two steps of A, the first 3 steps of B, and the first step of C. This definitely seems to go along with at home as he is still not cooperating with the use of many pictures and the making choices category is based on using pictures. The B category has to do with following a visual schedule and we all know how much he loves to have a schedule and know what is expected so it makes sense that he has made the most progress in this category.
In addition to these categories, the Communication goal is tracking the signs/words he uses throughout the day with consistency. The teacher notes on 10/20/09, Brycen used 5 words/signs consistently and in December 2009, that jumped to 23! I keep telling everybody how much his language has progressed over the last month, but I think this jump in numbers makes it clear to everybody that we are definitely not imagining it!
The second goal is on following directions and is broken into 6 different areas of a simple oral direction. Brycen has mastered the following areas of following direction be December 2009: Do your work, come here, take hands, put away, wait. He only has one more area (Sit down) to master and he will have accomplished this goal! With "do your work," he needs to put his name/symbol in the basket to show he is there in the morning and his lunch ticket in the tin to take to the lunchroom. I think "come here, take hands, put away, and wait" are pretty self explanatory!
When looking back to where he started in August, we never imagined he would make this much progress in 5 months and now that we see the data from school to show us exactly how much, we continue to agree that school was the best decision we could ever have made for him! Consistency and routine are definitely the best policies for Brycen!

Iowa Autism Council makes recommendations to the state

This article summarizes the recommendations the IA Autism Council is presenting to the government in order to give the most support to children and adults affected by autism. Currently, most children that are diagnosed with Autism, are put on a long waiting list for the Ill & Handicapped Waiver and they have to wait 18months or longer to access Medicaid insurance and other support like respite services for the parents. Some children, like Brycen, are found to have an additional diagnosis that may qualify them for the Intellectual Disablities Waiver which currently does not have a waiting list, but what about those children that are found to only have Autism or Aspergers? They not only sit on a waiting list to start services with I&H, but then this waiver only takes them to age 18 and then the parents need to fight to find a different waiver they may qualify for. We all know that at this time, Autism is a lifelong disorder...it does not disappear at age 18 like this waiver seems to think it does. Improvements need to be made to form a specific Autism Waiver that is specific to the needs of families of children with autism. We all know that early intervention with children diagnosed with Autism is of the uttermost importance in order to make as much progress as possible with socialization skills and speech delays. Hundreds, if not thousands, of adults with autism in Iowa currently do not qualify for Medicaid insurance and do not have the means to hold a good paying job, housing, etc without the assistance of a support staff, but without services, they cannot get support staff to help them live their lives as independently as possible. Much less most private insurance companies will not pay for therapies needed by children and adults with Autism. So what do these families do? They either do not have their children receive the necessary therapies because they can not afford them, cannot afford transporting them to and from, and cannot afford to take off work to accompany them to the therapies. OR the family chooses to go deep into debt because they want to do anything possible to help their child.
As you can see, I am very passionate about this subject and I was long before Brycen was diagnosed with Autism. This is a rising epidemic in Iowa, the country and across the world, but it seems that though they are talking about it at government sessions, nothing is being done to help these children, families and adults out!
1 IN 110 CHILDREN ARE CURRENTLY DIAGNOSED!
http://www.kwwl.com/global/story.asp?s=11889857

Quotes That Give Our Family Meaning

I was doing a search and ran across a few websites with some fabulous sayings...and quite a few stood out to me!

• "When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has opened for us." Helen Keller: When we first realized that Brycen was going to be diagnosed with Autism, I felt like it was the end to my plan for my son. Though I still question why it happened to Brycen, I do now realize that it is God's plan for our family. Though the door closed on the plan we originally had for our son, the door that opened is one that will teach us the patience we need to raise our son with the plan that God intends for him!
• "If there is no struggle, there is no progress." Frederick Douglass: We struggle most days with Brycen's lack of communication, his constant aggression, sensory issues, and his stimming behavior. If we did not have these struggles, then how would we be able to measure his progress?
• "Likely as not, the child you can do the least with will do the most to make you proud." ~Mignon McLaughlin, The Second Neurotic's Notebook, 1966: So true for us...it's funny how before Brycen began regressing, we were excited for his first words, when he walked, etc...but once he started regressing and some of his skills including his language went away, we were devastated. I, especially, realized how I took him saying "momma" for granted. It has been almost a year and half since I last heard him call me "momma" and I can tell you that it won't just excite me when he finally says it, but I will be crying, screaming, blogging, calling every person on this earth to tell them about it. We will NEVER take for granted one word that comes out of his mouth again!
• "You don't choose your family. They are God's gift to you." - Desmond Tutu: When Brycen was first diagnosed, many people would say that I was chosen to be his mother. As the months go by, we are realizing that it was not us that was chosen for him...he was chosen to be ours! God chose him for us to teach us patience and acceptance, more than we could have ever known without him being the way he is. Though I am envious of my friends that have children that are talking and playing with other kids and not stimming all day long, I know they should be envious of me also because Brycen is an angel from God that has opened me up to be a better person!
• "The most important thing a father can do for his children is to love their mother, and the most important thing a mother can do for her children is to love their father." Anonymous: I've always believed in marriage and Mike and I are very lucky that our parents are both still married, as well as all of our grandparents stayed married until now or until their death (RIP Grandpa O, and all of Mike's grandparents whom I never had the chance to meet). Now more than ever, we have both realized how important it is to have both parents available to raise a child, much less a child with a disability. Loving each other and staying together through thick and thin is the best gift we can give to Brycen as he continues to grow and progress with the dedication of both of us in his lives every single day.

"Welcome to the Community"

Every week I get emails from the Autism Speaks group and they frequently include stories written by others who are also experiencing a child or other family member on the spectrum. This story tugs at my heart as I remember feeling the same way not too long ago...the emotions are still so fresh. Please read this story and try to put yourself in this parent's shoes...and then when you are out in the community and see a child that is being "naughty" or "needs a spanking" (these are personal things I have heard from a couple at Wal-mart a few months ago with Brycen), remember there may be more to the story. Parents of children with disabilities, as well as adults with disabilities, should not have to stay home or only go to groups that are specific for children like their own just because they feel they or their child may be judged. I am not saying that everybody is this way, but in my years of working with children and adults that "act" or "look" a little "differently" than I do, I have watched people treat them in a not-so-nice way and I think it is absolutely horrible that some people cannot accept that others are different and most of the time, they do not choose to be. So, please, read this story and think of all the parents out there in this world that feel this way. Oh, and I actually wish there was a group in Storm Lake where we could get our children with disabilities together on a regular basis, because I really feel Brycen can learn a lot from what other children are experiencing!
http://www.autismspeaks.org/community/ownwords/intheirownwords_butler.php

Acceptance of course...but a cure would be even better!

Many of you have probably been reading the recent status updates on Facebook that people are using that refer to an illness, etc and that people just want acceptance. The recent one I have been reading on a lot of my "friends" statuses are about children with disabilities and how they want people to know it is not a disease and that all they want is acceptance. I think it is great that so many people are wanting to spread the word about children with disabilities! But I do have to disagree with this statement a little bit in the terms of what we are dealing with.
Earlier this week, I met with a family that has a teenage boy with Aspergers. He has a high IQ, very smart and verbal, but lacks the socialization, has sensory issues, as well as takes many things literally. The mom and I discussed the differences between our sons even though they fall on the same spectrum. I asked her the question on if she could "cure" him, would she do it? She said that she would not, as so many of his issues are a part of him, a part of his personality and who he is every day. I can see exactly what she is saying! Nobody wants to take away the unique personality traits of their children, but I differ in that I would LOVE a cure for my son! It's not that I don't accept him for who he is...but, seriously, who would actually choose to have their child not be able to talk or communicate with you if they had the choice! I think the difference in our beliefs lies in the difference of their diagnosis'...I don't wish Brycen to not love trains, not have some "OCD," not be very active and smiley...but I definitely wish he could tell me what is wrong when he is upset and throwing things, and I wish I could hear him say "I love you, Mom"...heck, I would even just take hearing him call me "mom" again!

Letting Go

When Melissa brought the Smart Start Basketball camp to my attention I was all for it. Basketball has always been a love of mine. I can remember playing from sunrise to sunset as a young boy and to share this with my son would be great. The night before I started thinking about all the things that might happen, I was starting to think it might be better if Brycen and I didn't go.
My biggest fear was having everyone stare and talk about us. I was afraid they might say things like "How come He can't control his son" or "That boy isn't right". As I started contemplating this I then realized was I trying to protect Brycen or myself?
I came to the conclusion that I have to let go. Brycen is my son why should I care if people stare or talk. I'm not protecting him any if I'm not giving him chances to succeed.
After going a few times and watching how happy Brycen is running around having his Daddy chase him.The fact is I MUST LET GO and allow Brycen every opportunity that every kid has regardless what others think or what my fears might be.

Basketball camp for Brycen...and lots of exercise for Daddy!

Brycen has gone to the Smart-start basketball camp 3 times so far and has two more times next week. To Brycen, being in this big and open space means time to run like crazy! Poor Daddy is definitely getting his exercise on these nights, chasing Brycen from one end of the gym to the other constantly. The camp is for 3-5 year olds and one of their parents or another adult. The camp is set up to start with stretching, move into drills in 4 different areas, then running. Brycen attempted some stretching with Mike on the second night when I was there to observe, he refuses to learn how to dribble, can pass the ball to us, but refuses to catch the ball and instead will try to hit it like a volleyball and then run as fast as he can away from it. He wouldn't learn the side-to-side shuffling, but of course loves the shooting drill. This is where we spent the most time the second night with me helping Brycen to take turns standing in line (which he actually did without yelling) and hand-over-hand shooting with him as otherwise he will go right up to the kid's sized hoop and "dunk it." The night ends with running drills which we all know Brycen is an expert at! Only the kids are supposed to stop at certain points or run backwards...ummm, maybe he'll catch onto this next year!

Otherwise, I think this "camp" is well worth the $15 spent...teaching Brycen to be in a gym full of 30 other kids and adults...attempting to teach him to listen to directions and tolerating taking turns...and definitely gives him the exercise and physical stimulation he craves day in and day out! Enjoy the video below of Brycen taking part in his favorite part of the night...and also notice he actually seems to notice the other kids running too!

He's gaining momentum!

I have been hesitating to blog about Brycen's recent progress...because I worry that once I get too excited and make it known in words to so many people, that it will stop. I know I should just be happy that he is making progress, and I am...but it is still so hard grasping just how far behind he is. He should be able to talk in sentences, identify colors, count to 10, take turns, share (at least a little bit), and not need so much attention and supervision being that he will be 3 1/2 in a couple weeks. But he is still functioning at about a 16-18 month old level.
Now onto the good things! Over the last week in school, despite many days being cancelled for snow, he has shown better listening skills at school with directions, he began matching the letters of his name, and he began identifying various pictures through pointing that we didn't know he recognized. Each week, the teacher is developing a list of words/pictures they will work on that week. This week's list has a few he already knows and can say such as ball and car, but has a few difficult ones like chair and house that he has yet to recognize or imitate.
His imitating of sounds and words has come so far in the past couple months and he gets so excited when he knows he is doing something right! And he even has a cheerleader by his side when we work on puzzles or flashcards as Aubree loves to cheer and clap for him every step of the way. They have almost reversed roles in that Aubree is acting like the older sibling now and helping Brycen along!
With matching letters of his name, they have a paper strip in front of him with his name spelled out..then they put the different letters of his name scattered on the table in front of him and he must grab the letter B and put it on the B on the strip in front of him. They said when he worked on this, he did it several times in a row correctly! This boy has definitely been holding out on us!
I feel like we are on the edge of a breakthrough and I don't think it is because of anything I am doing specifically. I really think that all the time and resources the teachers have at school, as well as my parents visiting for 5 days and constantly working on words, puzzles, flashcards, and fun activities with him is what is making his progress so evident at this moment. I was completely ready to work on many things with him over Christmas break, but I definitely don't have the patience to sit down and do more than a few minutes of something with him...I get easily frustrated with his lack of attention span and his aggressive behavior that I just give up on trying to work with him on certain things. I think he also is very aware of how he can drive me nuts, and he does it on purpose just like any other kid that knows how to push their parent's buttons. He definitely understands more than what he can express!
Please keep Ellie, Angie and the rest of their family in your thoughts and prayers as they are going through a very difficult time. Not only is Ellie cycling with her physical health with her reaction to gluten, but Angie and Ellie just also endured some of the same testing we went through with Brycen back in August. I can distinctly remember my feelings and emotions that day...I remember calling my Mom in the middle of the morning in IA City and telling her I still had hope that they were going to tell us Brycen was just fine, would catch up to his peers in no time, and that it definitely was not Autism. It has taken us several months after that appt to grasp the extent to which Brycen is behind and what lies ahead of him and us as a family. I hope that Angie and Ellie are able to get through this difficult time and come out on the other end stronger than ever!