"mom"...usually a word that children say frequently

"Mom" is a word that I used to hear from Brycen before he regressed...and in the last year and half I believe I have only heard it a couple times...and those times may have been flukes or my brain playing tricks on me. Most children say "mom" or something similar well before their first birthday and continue forever. Not only do I not hear it from Brycen, but I actually rarely heard it from Aubree until recently...not that I think there is anything wrong with her development, but I think we focus so much on Brycen, that we didn't really focus so much on her language over the last year and since she was not hearing Brycen say "mom," it didn't really register in her head.

It makes me sad to think about this...just imagine your child not calling you "mom." I'm sure a lot of you are thinking that you wish they didn't as much..."moooooooom" they scream from a couple rooms away when they want something, or "oh, mom" when you don't give into them and so on. Please don't wish your children would stop saying "mom" or wish they wouldn't talk as much as they do...because some of us wish the exact opposite and would be in heaven if we could hear what you do every single day!

3 1/2 weeks left...then what?

I can't believe school will be over in 3 1/2 weeks for Brycen! While I know that all parents dread the end of the school year in some ways because they now have to keep their kids occupied all day and every day...in our situation, the end of this school year is a big one. With this being his first year of school, and since Brycen showed huge improvements over the last 8 months, we are not sure what 3 months off from school will do to him. We experienced our fair share of regression when this whole thing started and I really don't think I am strong enough to go through it again:( Even though he showed drastic improvements in many areas in 8 months, he is still functioning around the development of a 1 1/2 yr old in communication and attention span...while his socialization skills are even less I believe. So even though he shows improvement, the gap between his developmental age and chronological age just keeps widening every month. While I hope and pray that I can be patient and organized enough to keep him busy and at least help him maintain where he is now and not go backwards, we are well aware of the effects long breaks have on children with autism. Unfortunately, a few friends have informed me of how hard it is to fight for extended school year in this area. And since we have no proof that he will regress without school, we really have nothing to back us up on this one...besides being his parents and afraid of it happening, the school comes from the financial point of view and sees there is no need until it can be proven. One friend pointed out that he did maintain his skills over the 2 week Christmas break...so that gives me hope that we can do this! I plan to implement some formal speech therapy over the summer to keep that going, though it will consist of having to drive him at least 45 minutes to over an hour to the nearest available speech therapy clinic (there is one clinic in SL, but is either way too busy to fit in more appts or there is not a therapist on staff).
In the meantime, we just keep doing what we are doing...whatever that is anymore!

10 Reasons I Vow to Keep Fighting Autism

1. Brycen didn't ask for this, nor did we as parents do something horrible to cause this, therefore we need to advocate for his and our needs so we can function together as a family.

2. God chose me to be his mother (and Mike to be his father) for a special reason only he will know...and I can guarantee that is on my list of top 5 questions to ask God when I see him after death.

3. To educate those who don't understand what Autism really is and how it really affects the family...because more likely than not, they may find themselves in mine or a close family member's shoes someday (see #4).

4. 1 in 110 children (1 in 70 boys) is the current statistic for children that are being diagnosed with an ASD. Compare that to the 1 in 150 rate just a couple years ago...do the math!

5. There is nothing more important than my child, my flesh and blood, and giving him every single chance in this world to be a typically functioning child that can do anything and everything he desires.

6. So I can continue to take pride in every single accomplishment that Brycen achieves and know that we had a part in him achieving it because development does not allow him to accomplish most things on his own anymore.

7. He has taught me that a mother's love (and father's too) is unconditional and can stand above all...and for those people that say they "couldn't do it", ANYONE can do it if they are put in the situation and love their child more than anything in the world! I just hope you don't have to:)

8. I get to witness miracles and will never, ever take one word or positive attempt at communication for granted like many other parents of typical 3 year olds do every single day (you will never find me complaining about how Brycen won't stop talking or won't stop asking questions).

9. I don't want any other parent to go through watching their child "lose" skills and be trapped in their "own little world" because it is a horrible feeling of helplessness that no one deserves to feel.

10. Have you seen my son's smile and heard his giggle?! It's contagious and full of life...this is one thing that proves the myth wrong that children with Autism do not have emotions or express their feelings...just spend a few minutes with my son and though he may not smile back at you when you smile at him, he will eventually smile/giggle because something made him happy. We may never know what that was, but who cares as long as he is happy!

The most recent meltdown

Frustrated! That's what I have been all day!
Brycen slept through the night last night so you think he would wake up and go to school in a great mood...um, yeah, sure...not this morning of course! When I walked him out to the living room to get his shoes, the crying, throwing, and hitting started...and we still have no reason why it really started. The shoes were thrown, Daddy pulled him onto his lap and the hitting started while I struggled to get his shoes on. Then it seemed like he calmed down for enough time to put his jacket on...but then the backpack went swinging and flying to the floor and he refused to pick it back up. He walked out to the car fine but as soon as we pulled up at the school, he began kicking the back of the front seat and screaming. I talked him down and we walked into school thinking it was all over...but of course he had more in store for me (once again not having a clue what is going on or what triggered this). He stopped in the middle of the hallway and looked around like he was going to make a run for it in the middle of all the arriving students and parents. I was able to get him back on track to take off his jacket and hang it up, but then he took off running into the classroom. I followed and asked him to do his "work" at the table, but he screamed and ran again from me. It seemed like he was going to the table to do the "work" so I slowed down...big mistake, Mommy! The lunchcards and namecards went flying all over the floor with one big sweep of his arm...sigh, sigh, sigh. While his teacher looks on, I lean over and do hand-over-hand picking up the cards with him, thinking the entire time that "isn't this what the teachers get paid for"! Sometimes I wish I was like all those other parents that just walk their kid in and leave, but since I'm a parent that actually likes to see my child succeed and require him to interact back with me by having him say "goodbye" to me, I guess the teacher doesn't jump in to help at those times. It seems she has plenty of other "advice" about him and what to do, but of course the few times that I just want to walk out of the room and have a break from the screaming, hitting, throwing is the time she sits at her desk and "watches."
So, the moral of the story is...we can NEVER pinpoint when a meltdown will happen. We can prevent, we even had him in his regular routine this morning, he slept through the night...everything we try so hard to do to help him succeed and achieve on a daily basis...and then something like this happens and you wonder "where did I go wrong this morning." Oh, yeah, I guess I could have been more patient at the start...but I'd like any parent that deals with this regularly, with no warning, with a child that can't communicate, a child that most symptoms cannot be lessened with medication...those parents are free to jump in anytime and tell me that being patient 24/7 is easy! Otherwise, for those others that read this...this is our life! This is why we don't go many places, this is why we don't attend many family functions, this is why we have to bend over backwards and plan and prevent and prepare for any possible thing...and once again, this is our life (and this was a very, very small meltdown, so you can imagine the next step up, and the next, and I'm guessing you probably can't even imagine the worst unless you've been there and done that with a child like Brycen)!

Interactive Autism Network: Family Stress

I recently mentioned a network that Mike and I joined where parent's (and other family members too) take part in providing answers to questionnaires and polls that IAN then puts into research reports. The first in a series of 3 reports was published in April 2009 and focused on family stress of those raising a child with an ASD.
I just want to summarize this article in this post and if anybody is more interested in reading the entire article, please let me know and I will send you a full copy.

The article zones in on 6 areas that cause family stress: Child Behavior, Exhaustion, Treatment Disappointment, Getting Treatments, Setbacks, and Worry for Future.
Thousands of parents participated in this survey with children at varying places on the Autism Spectrum and the following are the percentage of parents that reported Moderate to Great negative impact on their stress in these areas:
Treatment Disappointment- 46% Exhaustion- 48% Getting Treatments- 68%
Setbacks- 70% Child Behavior- 72% Worry for Future- 88%

I found the entire article useful in that it really justified how I have felt for the past year with comparing my feelings and thoughts with those who providing comments in the survey. Below are several areas of the article that I felt were very important and behind each part I will say how this area affects us.

• Two areas were frequently mentioned by parents as contributors to stress: meltdowns and aggression. Extreme behaviors frequently result in social isolation for the entire family as the parents stick close to home, to routines, and to familiar environments that are comfortable for the child with autism to prevent any meltdowns or other people's response to them. (I COMPLETELY AGREE WITH THIS AS WE HAVE FOUND BRYCEN RELIES ON HIS ROUTINE EACH DAY AND THAT ROUTINE HAS TO CARRY OVER TO ANYWHERE WE VISIT OR WE ARE JUST SETTING HIM AND OURSELVES UP FOR DISASTER. MANY PEOPLE MAY WONDER WHY WE WON'T ATTEND FAMILY FUNCTIONS, OR WILL ONLY ATTEND A SHORT TIME, AND THIS IS THE REASON. WHY CAUSE ANYONE, ESPECIALLY OUR CHILD, UNNCESSARY PAIN AND DISCOMFORT, BY OVERSTAYING OR ATTENDING PLACES THAT WILL MOST DEFINITELY CAUSE SEVERAL HOURS OF DEALING WITH THE MELTDOWN AFTERWARDS).
• Sleep disruption...do I really need to say more as most children on the spectrum have sleep issues. (IN BRYCEN'S CASE, HIS BRAIN DOES NOT PROCESS MELATONIN LIKES OUR BRAINS DO THEREFORE HE CANNOT STAY ASLEEP. HE IS GIVEN A MELATONIN SUPPLEMENT 1/2 HOUR BEFORE BEDTIME AND THOUGH THIS HELPS HIM TO FALL ASLEEP FASTER, HE METABOLIZES THE DOSE VERY FAST AND THEREFORE WILL MOST LIKELY WAKE UP SEVERAL HOURS LATER. WE ARE LIKE PARENTS OF A 2-3 MONTH OLD BABY EACH DAY, VERY EXCITED WHEN HE SLEEPS THROUGH THE NIGHT AND VERY EXHAUSTED WHEN HE WAKES UP AND WON'T GO BACK TO SLEEP AS FAST AS WE WOULD LIKE HIM TO).
• Treatment issues...all treatment is not available in every town, nor is the quality of treatment the same. Transporting a child to and from therapy and fact that most therapies are only for hours each week, therefore it is necessary the parent be also trained in the therapy so that they can continue the treatment 24 hours a day/7 days a week in order to see any kind of results...this typically results in one parent of the child with autism either not being able to work, or having to work only part-time in order to be available for these things. In another aspect of this, parents and the child may invest a lot of time, money, energy, and hope in a therapy that ends up not showing any or only minimal results. No therapy has shown to work with all children on the spectrum, therefore it is a chance a parent takes when starting a therapy. This disappointment is extreme and typically grief follows each time. (UNFORTUNATELY WITH MIKE'S JOB, WE MAY NEVER LIVE IN A BIG ENOUGH CITY WITH MANY OPTIONS AVAILABLE FOR TREATMENTS. ON THE OTHER HAND, WE ARE LUCKY ENOUGH THAT OUR PRIVATE INSURANCE COVERED A DECENT AMOUNT OF HIS EVALUATIONS AND WILL COVER CERTAIN THERAPIES UP TO A CERTAIN NUMBER OF APPOINTMENTS IF A DOCTOR PROVIDES THEM WITH INFORMATION THAT THESE ARE NECESSARY. WE ARE ALSO LUCKY IN THAT BRYCEN WAS APPROVED FOR MEDICAID SHORTLY AFTER DIAGNOSIS AND MEDICAID TYPICALLY PAYS FOR MOST RESEARCHED AND AVAILABLE THERAPIES. BRYCEN WAS RECEIVING THERAPY THROUGH THE BIRTH TO 3 PROGRAM AT THE LOCAL AEA AND INSTEAD OF SHOWING IMPROVEMENT, HE ACTUALLY CONTINUED TO REGRESS THROUGH THIS THERAPY.)
• Worrying for the future was the most stressful for parents of child on the spectrum. Yes I understand that all parents worry about a child's future and if they will be a respectable and responsible citizen...but there is so much more to this when you have a child with a lifelong disability. These parents have a lot more to worry about: prospects for independent living, employment opportunities, potential romantic relationships, whether the child will have any friends, being bullied in school, how the child will fare once the parents are no longer able to advocate or are no longer here, the stress on the siblings to take care of the child with autism after the parents are no longer able to, the child's ability to be safe in the community, and not being taken advantage of by people due to their lack of understanding. (MIKE AND I HAVE INFORMATION ABOUT SETTING UP A SPECIAL NEEDS TRUST FOR BRYCEN...MOST PARENTS JUST HAVE TO SET UP A BASIC TRUST, WILL, POWER OF ATTORNEY...BUT IN OUR CASE, ONLY CERTAIN ATTORNEYS ARE SPECIALIZED IN THIS AREA AND I'M SURE IT WILL COST AN ARM AND A LEG TO SET UP AND THEN OF COURSE REVISIT EVERY COUPLE YEARS AS THE LAWS CHANGE. I ALSO WORRY ABOUT THE STRESS THAT WILL BE PUT ON AUBREE WHEN SHE BECOMES AN ADULT AND MAY HAVE TO TAKE OVER GUARDIANSHIP AND RESPONSIBILITY OF BRYCEN WHEN WE ARE EITHER NO LONGER HERE OR ARE UNABLE TO. SHE MAY NEVER KNOW WHAT IT IS LIKE TO HAVE A TYPICAL SIBLING RELATIONSHIP AND MAY BE RESIGNED TO BEING A CAREGIVER FOR THE REST OF HER LIFE. THOUGH I HOPE SHE WON'T SEE IT AS A BAD THING, BUT IT IS A LOT FOR A SIBLING TO TAKE ON AS WELL AS LIVING THEIR OWN LIFE, GETTING MARRIED, HAVING THEIR OWN CHILDREN, ETC.)

These are just a few of the areas that this article stressed as causing family stress around a child with autism (and most likely any child with a lifelong, debilitating disability). I will provide a summary of the next two parts of the series soon: Work life and Finances & Relationships and Resilience.

Sensory issues and Visual schedules

Last night I finished reading the book "Ten Things Every Child With Autism Wishes You Knew" by Ellen Notbohm...and am just amazed at the insight she gave to me about sensory issues and visual schedules. Before I go into these sections, I want to list the "Ten Things" which results in obviously 10 chapters in the book.
1. I am first and foremost a child.
2. My sensory perceptions are disordered
3. Distinguish between won't and can't
4. I am a concrete thinker. I interpret language literally.
5. Be patient with my limited vocabulary
6. Because language is so difficult for me, I am very visually oriented
7. Focus and build on what I can do rather than what I can't do
8. Help me with social interactions
9. Identify what triggers my meltdowns
10. Love me unconditionally

I found myself with tears running down my cheeks multiple times while reading this book. It is actually a fairly short book (just over 100 pages) and I usually would read that in a couple nights before bed, but I had to span this one out over a week because I was getting very emotional.

Brycen is very, very visually oriented and we know this is an area we really need to work on. I was very excited to start using pictures over the Christmas break to give him choices in what he wanted to play with, but that really fell to the wayside as it was A LOT of work! So, then we met with the speech pathologists a couple months ago and they reiterated to us how important beginning use of pictures with him is. So we have been using a basic picture book for Brycen to gather what he needs to leave the house (shoes, jacket, backpack for school) and for the process of teethbrushing. What we have found with Brycen right now, is he gets very distracted by other pictures and can't focus on the one we need him to, so we use the flip album for these so once he has his shoes, we can flip the page to jacket and so on. With visual schedules and the PECS (picture exchange communication system), you need to teach the child first how it all works and we all know I am not very good at teaching things. This book made me realize that we may have been able to prevent a few of these recent meltdowns if we had a visual schedule that showed him ahead of time who was coming to visit, what days he had school, etc. I shared with Mike the other night that I really need to start focusing on this...so that is my new goal!

The other part of the book that really struck me was the sensory issues. When Brycen was first evaluated by the school's Occupational Therapist (not in person, but through questionnaires and a phone interview with me), they said he really didn't have many issues, therefore there is no time built into his IEP to work on this. The OT is just checking in with the teacher every once in awhile and giving ideas to work on with him from what they report to her. Well, in the fall is when we really saw the sensory issues sneak in. Brycen now has a horrible gagging noise he makes when certain textures or foods are in front of him...he loves cookies and frosting, but at school he picked up a cookie with frosting on it and accidentally dropped it, landing on the frosting side...when they picked it up for him, he started gagging at the sight. I do recall him also gagging more than a year ago while watching me feed Aubree baby cereal and jarred baby food. He also has gagged at finger painting too!
He also is very sensitive to touch...he loves to run his fingers up and down our arms, and runs his hands across surfaces like the tops of the chairs or booths in restaurants... as well as the rough textured wall leading up the stairs at my parent's home. He rarely gives full blown hugs and instead, will turn his back to us when he wants to give us a hug. Haircuts are a nightmare...have even tried cutting while he fell asleep and he immediately wakes up! Like a typical child, he doesn't like water to run down his face in the bathtub while we wash his hair, but he doesn't really mind the hair washing...so it can't be that his scalp is all that sensitive. This is definitely one of those mysteries we need to work on or see a therapist about as he HAS to have haircuts in his life.
He also seeks out lots of activity. He is almost always jumping, flapping, running in circles or back and forth from the kitchen sink to the window in the living room (the exact thing he is doing right now and has been for about 5 minutes while I type this). Certain noises cause him to be very sensitive, to get scared and cover his ears...such as lawnmowers, vacuum cleaners, hair dryer...but we can sit in the car at a railroad while a train passes by with the windows open and he is in 7th heaven!

So now I have just written my own book...not quite 100 pages but by far one of my lengthier posts! I would like to keep some of these shorter, but I have to tell you that there are not short explanations to symptoms of Autism. It's not just one thing in one area...it's much, much more and I can't expect blog readers to get a good picture of Brycen if I keep it short and sweet...because that is not Autism and that is not Brycen (nor is it me when it comes to writing...or talking...or anything).

Autism Myths

I am attaching a link to a site that lists myths about Autism that a friend recently posted on Facebook (thanks Angie!). It's amazing that people still believe these things several years after Autism has come into the news and society is being faced with it! The best is when it says that people believe all people with autism are alike based on seeing the movie Rainman. LOL! Rainman was released in 1988 and Autism was still so foreign to so many people at that time and research was just starting to come around.
One thing to note with this article is that I don't appreciate them using "autistic people" through the entire thing. I don't call you a "cancerous woman" or "diabetic man"....so please do not label my child as "autistic" like that is all he is. He is a child with Autism, as Autism does not define him...it is a part of him that he is fighting just like a person with cancer is fighting back against their disease!
http://autism.about.com/od/whatisautism/tp/topmyths.htm

Rough week...time to reflect

The last week has been so stressful for everyone in this house! While things are going better with Aubree now that she is not in pain, Brycen just doesn't have the capability to process all the change that is going on. Not only did he have multiple days off of school, but both sets of grandparents visited within a week, Aubree broke her leg, and his whole daily routine was pretty much thrown out the window despite all attempts from us to keep it as similar as possible.
The things that Brycen seemed to enjoy before all of this such as leaving for school in the morning, eating, getting ready for baths...they have all become a struggle in the last week. Over the last couple days since it has just been the 4 of us again, we have determined the biggest change for him is having visitors at the house. Don't get me wrong, he LOVES his grandparents so much, but when we go weeks of it just being the 4 of us and then out of the blue we have one or more extra people in the house for days, he just can't adjust to that. I think it is hard on typical people to adjust to other's visiting for days, but for Brycen, even if it is people he knows and enjoys, a good change can still be so life changing for him and he just can't find the balance of it all.
The part that I am struggling with is that sometimes we can't predict what is going to happen (obviously meaning Aubree breaking her leg and not being able to ride in a car with the cast) and therefore we cannot prepare Brycen for the change. I pride myself on keeping his days as routine as possible and to be prepared for as much as possible, but unfortunately Mommy just couldn't predict this change. Most children would just learn to adapt to the change because they are not given a choice and may have a couple temper tantrums in the process, but in Brycen's case that is not possible and the temper tantrums are not temporary or short-lived. I am still grasping the fact that he does not have the capabilities in his brain to process change so suddenly and to adapt to what others need. This just reiterates to me once again that Autism just takes over your world, your family, your thoughts, your feelings...it's nothing we asked for and of course it is nobody's fault, but these are the days and weeks where we question "why". Whereas other disorders or medical needs can be helped with medication, children grow out of, or only affect one or very few parts of a family or child's life, Autism is 24 hours a day, 7 days a week, 365 days a year for a life time. I hear people say to "walk in their shoes" or "live in their house" for sometime to see what their life is like...honestly, I don't want anyone to have to walk in my shoes or live in my house to see what goes on because I do not wish on ANYBODY what Autism requires of me. Just because you may work 40 hours a week with a child with Autism or you have read many books or taken many courses, nothing prepares you for your life being taken over by this disorder. Others go home after a few hours with him, don't deal with the lack of sleep, the financial stress of paying for evaluations and ongoing therapies, the unwanted advice, the many hours of researching medications to help alleviate one or more symptoms, the ongoing IEP meetings and conferences to discuss your child's goals, the guilt that you could do more to help him or enroll him in more therapy, the strain of not being able to work full-time anymore because no daycare could care for him and keep him safe, having to research special needs trusts for when our time comes to leave this world, the constant grieving process that seems to keep going in circles, the lack of knowledge and acceptance of Autism in the general population, the stares when your child starts flapping and making odd noises in the middle of the store, not able to have time with your spouse on a regular basis, not having any idea what the future possibly holds because there is no research yet to tell you, and I could keep going on and on and on.
Then after I write this, I look over at Brycen giggling while he is watching a Thomas the Train episode...and I get tears in my eyes because I would never trade him for any other child in the world! So I guess I also don't want anyone to walk in my shoes or live in my house because I don't want to share this precious child that was given to me for a reason only God knows.

April is Autism Awareness month

Things have been a little crazy around here lately and I can't believe I have not posted once in the month of April until today!
April is Autism Awareness month and I especially want to thank all of those who supported the "wear blue on April 2" event. I was actually attending a conference about Autism and social relationships that day.
I can't believe the Iowa Walk Now for Autism Speaks is only a little more than 2 months away too! The team has raised over $700 so far and we are well on our way to meeting our $2000 goal. Melanie has finalized the design for the t-shirts and I will be submitting the list of sizes to the printers this week, so if you would still like to walk, you have a few days to sign up and email me your tshirt size.
Mike found a great website that we joined that does research on how Autism affects family, finances, relationships/marriage, and many other things. We have entered Brycen's information on this site (IAN- Interactive Autism Network) and have answered a few background questionnaires so far. I have found some fabulous articles they have published on the above topics...and reading these was a huge relief to me. I have many people that support me...family, friends, and other parents of children with autism...but I always question if my thoughts, fears, etc are similar to these other parents and how they differ from parents of "typical" children. I know a lot of people in the past have told me not to worry about the future yet as there is so much time for research to progress...and a lot of people have given me great advice about how to deal with sensory issues or how to stay "positive"...but this is nothing compared to reading the statistics and comments from parents in same situation that are SOOOO similar to my own thoughts and fears over the last year. When I have enough time on another day, I plan to post some of this information so those who are interested can have some insight into all of this. Like I said, it gave me relief and validated all of those feelings I have had over the last year!
Anyway, thanks again for all the support and for making others aware of such an important epidemic that is taking over our children!