The Reality of Having a Nonverbal Child

Brycen and his kindergarten friends went on a field trip today to a local nature center.  I love how much this school gets the kids out into the community whether it's attending the Homecoming Parade, to the local theater to watch a play, and a big trip to the zoo last Fall.  Mike actually had the chance to go on the zoo trip and had tons of fun!

When Brycen came home on the bus today, I attempted to ask him questions about the trip to the nature center.  I started with yes and no questions but he was too distracted to answer anything.  I showed him his lunchbox and asked him if they ate outside on a picnic but he ignored the question.  I asked if he went on a walk with his associate and kindergarten friends, and this caught his attention but he just stared at me.  I then asked him if he rode the bus to the center and he finally said "ss" which means "yes."  At this time, he had enough of the questions and just wanted to watch a train video like he does on the days he doesn't have therapy after school...he grabbed the video and thrust it into my hands, yelling and pointing at the TV.  Of course I knew what he wanted because it's the same thing every time he wants to watch a video so I did as he "requested" after I prompted him to sign/say "please."

I then left the room (of course not very far as I rarely leave the kids in one room together without supervision due to Brycen's aggressive behavior) and my chest felt heavy & my eyes filled with tears.  I don't want the kids to see me cry.  I don't want myself to cry...but it's inevitable because it's one of those days when reality has hit me.  It's slapped me across the face causing a sting that will continue for a long time...reality that the sting I first felt when Brycen lost his language 3 1/2 years ago is still a dull ache, and each of these moments just keep adding to that original pain.  It doesn't matter how much I accept "Autism" or how much I know about it or the possibility that someday he will talk again...it still hurts and nobody can tell me to feel differently. 

He's almost 6 yrs old.  Completed two years of special education preschool and almost one year of kindergarten.  Been in consistent speech therapy outside of school for two years.  Received an amazing communication device a year ago.  Had genetics testing (nothing in results).  Sees a psychiatrist who prescribes a daily medicine for him to decrease his anxiety and stimming in hopes of seeing results in his development such as speech. 

Nothing has brought his speech back.  Nobody can even tell me what to expect with his speech in the future. 

I appreciate all of those people involved in all of the above things and the time they have given us to help him improve in many areas!  AND I know he has improved in other areas of communication such as gesturing, some simple sounds, eye contact, usage of device to mostly answer questions, and recently a few general comments on the device.  But he is still nonverbal.  He still can't tell me about his day like other kindergarteners are telling their parents right now about the field trip and all that they did and saw.  He can't even say "mom" correctly and without prompts (it comes out like "bom" and he ALWAYS has to be prompted by me to say it).

I'm not saying these things for pity.  I don't want you to feel sorry for me...or for him.  It is what it is.  We don't need sympathy.  We need action...we need help...we need understanding...we need support...we need cheerleaders. 

I love my son more than anything in this world and I accept him for who he is.  But if I was granted one wish today it would be to give my son his voice back.  Let me have just a few minutes after these special events so he can tell me what his favorite part of the day was like most other children are able to do.  Maybe I'm selfish as maybe he'd prefer to not have a voice and is happy the way it is...but I think every mom has the right to hear "Mom" once in awhile and every parent has the right to have a conversation with their child at the end of the day.  That's something every parent looks forward to the day they look into their child's eyes for the first time, right?!

Fighting Autism One Skill at a Time!

I don't even think I need to explain how amazing this video is!  I'm sure the Autism parents, teachers, and therapists that watch this can make a list of how many positive things they see in this 30 second glimpse of what happened at our house this evening.  Many people have worked hard over these last couple years to help Brycen with his social skills and other areas...and through this video you can see all of that hard work paying off!  These moments are very very rare in our household where Autism seems to take over even the simplest of interactions between our children.  Not only are we impressed with Brycen, but the patience and skills that Aubree is demonstrating just shows how much she has internalized over the last couple years of participating in his therapies and our day-to-day life.  There is no doubt in my mind that our 3yr old girl will choose a career path in an area that works with those with special needs in some way!  These are the moments that continue to push us along this path of building Brycen up to all he can be and continuing our fight against Autism one skill at a time!

The Difference Between Awareness and Celebrating

The last 24 hours of Autism Awareness has been exhilarating!  From seeing all of the beautiful pictures posted by friends of their houses bathed in a blue light bulb to the picture of my friend Ilse's accomplishment of having an entire MOUNTAIN lit in blue in South Africa where she lives.  It's amazing just how much support there really is in this world...which is good because Autism is not going away.  With the statistics just released this week of 1 in 88 people now being diagnosed (1 in 54 are boys), those numbers are not in anyone's favor.  It's reality to say that if you do not already have a family member with Autism now, fairly soon you will.  It's not a great statistic.  But when we look past that statistic, it is what it is and my son is one of those 54.  Though he is a face of Autism, it does NOT define him and what he can do in life.

I thought it might be a good time to talk about the difference between awareness and celebrating when it comes to Autism.  Autism is not something we chose for our son...nor would we ever wish Autism on anyone.  No doctor can tell me if my son will ever talk again like he had started to before regression at age 2.  No doctor can tell me if there are any specific treatments that are beneficial for my son without me just trying them.  No doctor can tell me if my child will be able to understand the possibility of going to college, if he will ever live on his own, or if he will get married and have children.  The only thing we do know at this point is that there are no guarantees when it comes to Autism.  It's all a guess right now and that is why we rely on research to try to give us any and all answers.

April is Autism "Awareness" month...not Autism "Celebration" month.  I want everyone to know that I do not and will not celebrate Autism and what it has stolen from my son.  If you do choose to celebrate your child's autism, that is fine with me...I will not judge your choice because we all have different philosophies and beliefs in life. My belief is that my son would have more opportunities to participate in life if he did not have Autism.  This does not mean I don't love my son for who he is.  He has the most contagious smile and giggle...he has a heart that is big enough to love anyone who will attempt to get to know him...he is determined to learn things...he is smart and proud of what he accomplishes.  None of these things have anything to do with Autism...they only describe Brycen! 

I do choose to celebrate anything my child achieves just like all parents should with their children whether they are neurotypical or have a disability.  It's just that sometimes our celebrations for certain milestones come long after many others his age have achieved them...and since doctors can't even tell me if he will achieve some of these, it just makes the celebration so much bigger.  So I am not celebrating Autism...but I am celebrating my son's achievements in life!  Since I will talk a lot about Autism this month, it's because I want everyone to be aware of what Autism is and how it can affect a typical American family.  I want parents in the future to spot the signs earlier than we did and I want them to realize that having a child with Autism is not a "death sentence" for your life or marriage.  It just means you will face obstacles that many other parents will not in this world, but that is what will make this journey of life sweeter than anything else. 

So please join me in providing awareness this month...not celebration!  There is a big difference!

Kick Off to Autism Awareness Month!

April is Autism Awareness Month

In support of our son and all others affected by Autism, the two lights on the outside of our house will be blue for the entire month.  We will also be wearing blue tomorrow (April 2) for World Autism Awareness Day.  We welcome anyone and everyone to join us in either or both of these events!

In addition to this, I would like to make everyone aware of just how unique Autism is.  No child is the same on the spectrum.  Just like no child/adult is the same, neither is the approach his or her parents take to treat the symptoms of Autism with their child.  Though as different as we and our children are, the similarity still remains that we all want what is best for our child and want them accepted for who he or she is.
 

The following links are some favorite posts that will show you just how unique each parent's perspective is about certain situations they deal with or want to educate on.  The links provided are going to take you to some blogs of my most favorite people in this world.  I don't need to physically be with them or talk to them to know how much I adore them and their kiddos...and through all the moves we will make in the upcoming years, these ladies (and a couple gentlemen) will be my constant...my forever friends.  They are my online support group that I cherish...for every joy and challenge I have raising a child on the spectrum, they are the ones who will "listen" and give advice that I trust and know is in the best interest of my child. 

Thank you and much love...you all know who you are!

http://cadenstale.blogspot.com/2012/04/why-autism-awareness-matters-to-you.html

http://smallbutkindamighty.com/2011/08/19/im-not-a-bad-parent-right/

http://nathansvoice.blogspot.com/2011/06/never-ending-need-to-protect-and.html

http://katlynnmarlenesmith.blogspot.com/2010/08/i-cant-get-away-from-it.html
http://wildel8y.wordpress.com/2011/09/28/the-price-of-friendship/
http://racersmommy.blogspot.com/2011/04/details-in-autism.html
http://cgregoryrun.blogspot.com/2012/03/floating.html

Light It Up Blue: April 2012

April is Autism Awareness month and we will be participating in our second year of "Light It Up Blue" to spread Autism awareness and support all of those (including Brycen!) in their daily fight against Autism. 

There are many ways you can show your support...from purchasing a blue light bulb and putting it your porch light and turning it on beginning April 1 OR you could just wear blue on April 2 for World Autism Awareness Day.  A few dollars...or something you already own in your closet...your choice!!  Better yet, keep your light on the entire month of April like we will!  Yes it will cost you a few more dollars in electricity...but what is a few dollars when you are talking about support for someone who is faced with challenges day in and day out for the rest of their life?!

We would love to see all of our family and friends show their support!  We would also appreciate if you could email me any pictures of you showing support with "Light It Up Blue" by either emailing them to me @ melissatimmer@yahoo.com or tagging me in them on Facebook.

Thanks for all you do for Brycen and us all year long!

"Fixing" Autism- YouTube video

Below is a link to a YouTube video that Mike's cousin sent me (Thanks, Nicole!).  It's such a simple video with a wonderful message.  A similar story to Brycen's about the initially meeting milestones, and then stopping and regressing.  All of those things on the cards are true...so much is a battle between therapies, funding, research, school, and so on.  It is my life to fill out that paperwork, to make those phone calls, to shuttle him to and from therapies, to file the neverending paperwork just to keep his services afloat.  The books I read, the college classes I took, and even the years of work experience I had never fully prepared me for what it is like to parent a child at Brycen's developmental level 24 hours a day, 7 days a week, 52 weeks per year...for the rest of my or his life. 
"Autism" may have silenced my little boy's verbal communication, but I can guarantee it is not going to silence our fight!  Brycen will be the best Brycen he can be!

http://www.youtube.com/watch?v=z2B1FeS5VX4&sns=fb

Brycen made it into Autism Speaks Top Photos for Light It Up Blue!

Here is the link to see Brycen's picture that was rated the top second picture out of thousands that were submitted to Autism Speaks in honor of Light It Up Blue for Autism Awareness in April!  It's so great to see his face out there representing how Autism can affect anybody...there isn't a specific look to Autism as you can see.  It is out there everywhere you go!  I want to give credit to my brother-in-law, John, who took many pictures that day to honor Brycen and his fight, as well as all who came out to support that day to walk.  I know I've said this before, but I can't say it enough...Thank you, John, for capturing the beauty of my little boy!
http://gallery.autismspeaks.org/gallery/892?utm_source=social-media&utm_medium=Facebook&utm_campaign=Gallery

In addition to that, we are well on our way to meeting our goal of $3000 for Team Brycen.  I have attached another link that takes you directly to the team page on the Iowa Walk Now for Autism Speaks website.  We have many walkers signed up and many, many people who have donated from immediate family all the way to people that we have never even met!  Thank you for all of your support...and it would be great if we could see that number go ABOVE our goal again this year:)
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

AUTISM NOW: Summary of tonight's episode on affecting the family

The first episode in a 6 part series about Autism aired tonight on PBS Newshour.  Tonight's episode was an introduction to a little boy with Autism and his family and though the material only lasted about 15 minutes, it was full of honesty and information.

Here is a summary of what I took from the episode and how it relates or doesn't relate to Brycen and our family:

• Robert MacNeil started with a description of his grandson, Nick, and how he was born with no obvious symptoms of Autism.  Around the time that Nick turned 15-16 months old, this had changed and Mr. MacNeil referred to Nick as a "different child."  His daughter (Nick's mother) also talked about how her son went to his 15 month appt on track with all development and how he went "backwards."  Brycen also regressed but not until after he turned 2.  Upon looking back at still pictures and video, it is true for him also that he seems to be two different children (before and after regression).  His eyes look different, his mannerisms and how he moves is different, his sounds are different, etc etc.
• Robert MacNeil and his daughter discussed how Nick also experiences physical illness like digestive issues and brain seizures.  At this time, we do not see any of these issues in Brycen but that does not mean they are not there.  Later on in the episode it is discussed with Nick's doctor about how many behaviors such as stimming and sleep disturbances are typically contributed to the "Autism" when in reality these actually may be a sign of pain.  This is something that I definitely think about a lot...are some of the "behaviors" that Brycen is having actually a way for him to cope with pain he is feeling??
• Nick's mother contributes his regression to a mixture of vaccinations he was given at his 15 month appointment.  While I really have no opinion on if vaccines could be a trigger to Autism rearing it's ugly face in our children (every parent/child has a different story about this), but I do know that the last vaccinations Brycen had were 6 months before he showed signs of regression so we do not believe vaccines triggered his Autism specifically. 
• "Whole Body Experience" was discussed in relation to Autism which I completely agree with.  Autism used to be thought of as a brain disorder, but now we are seeing that it affects so much more and it is so important that you have a team of doctors to treat various symptoms.  This is something we have not yet expanded on, but have discussed and researched over the last couple of years.
• When interviewing Nick's older sister, she gave some very honest answers about how she felt life pretty much revolved around Nick and Autism and that money is spent on his vitamins and doctor appointments, as well as she wants him to be healed.  She made reference to being bored with Autism, it's unfair, and wondering if he was always going to be autistic.  Huge, huge fear of ours with Aubree!  We know that Brycen's care eventually will turn to her when we are too old to make the decisions anymore.  We know that over the next several years, she will feel like she is pushed to the side and that we don't treat her fairly, and how our life revolves around his needs.  What else do you do as parents?  You try your best to give as much attention as possible to each child just like parents of NT children...but you know that it really isn't fair.  It's not fair to any of us...to Brycen to have more obstacles in his life that he didn't ask for...for us as parents to not know how to help our child and to know that we will be lifelong caregivers to our child (yep, no retirement or empty nesting for us!)...and definitely not fair to her!
• The mother expressed how Autism does not leave a lot of energy leftover.  So true...another reason why we have finally made the decision that it's time for me to not work anymore and to focus entirely on the kids.  We did not come into any kind of windfall of money in order to do this, but we know as parents of a child with special needs, there are far more sacrifices you need to make.  Pretty soon Brycen will be increasing therapy to 3 times per week (which is actually minor compared to some parents that take their children 5 days per week) and that doesn't even include the occasional dentist, regular doctor, psychiatrist, IEP's, Case Management, Respite & SCL service meetings, etc that are required throughout the year.  Most children may have one doctor appointment every 1-2 months...but my child will have at least 3 appointments a week.  How many employers would be ok with their employee constantly having to take off work?  In addition to that, but how many daycares are really set up to care for children with special needs (between safety, staff training, etc) which plays into the fact that where would my child go so I can work?   Parents are constantly trying to stay on top of all the things we need to juggle just as parents...and then adding in the extra obstacles of the special needs child is just absolutely exhausting.  Then unfortunately, you just can't go to bed knowing you have the next 8-9 hours of straight sleep to recuperate because your special needs child also experiences sleep disturbances and has for the last 4+ years.  The cycle just continues over and over and you just hope that you have someone to rely on that understands how exhausting it is and understands all the safety concerns for your child (this someone happens to be Grandma & Grandpa in our lives thankfully) because not just anyone can watch your child.  It's not that easy!  You may think it is easy when we visit with you for an hour and I have brought an entire diaper bag of things to keep him occupied (sensory toys, snacks, juice, anything trains), but please know that is just an hour and I can guarantee I prepared for a long time for that visit just to try to make things look "normal" to the outside person.  One day, I really do want everybody to see what the "every day" is like with Brycen but in the meantime, I do want to protect people from what it can be like (most of the time anyway...he really does have some great days!).
• The last part of the episode was Mr. MacNeil discussing how hard it is as a grandparent to see the "disconnect" of Nick and feeling like Nick is "tuning out and ignoring" him while they are at the store playing with trains.  I can imagine that Brycen's grandparents and extended family feel the same way depending on Brycen's mood.  I really don't want anyone to feel hurt by this because it's the same with us.  Some days are great and I feel like he wants to hug me, try to communicate with me...and other days, it's like he doesn't care if we even play with him or he would rather just jump up and down, stimming while watching the cars go by on the highway.  All I can recommend is to keep trying...don't give up on him and developing that relationship with  him!  Deep down, I think he really knows you are there and trying to connect with him but he just doesn't have the ability to pull himself out of it and let you know that he cares too.  Get down on the floor with him, talk about trains, practice letters with him, give him Hi-5's...he may not be able to communicate back in all of this, but we know he gets that people care about him if he can see that they are trying.  Just please don't give up on him because I promise that he really does know how much people love him...and give him the chance to show you that he has so much to teach each and everyone of us about life and acceptance!

LIGHT IT UP BLUE!! April is Autism Awareness Month

"Light it up Blue" is the start of an entire month focused on Autism Awareness! Just a reminder that it would be great if everybody that supports Brycen could wear something blue tomorrow and on Saturday (April 1 & 2) in an attempt to spread awareness about this growing disorder. You know the statistics...you know they are rising...you know Autism affects so many areas in a person's life...you know there isn't a cure...so you also know that awareness is so important as this disorder is affecting someone you know as you read this. In addition to wearing blue, we would love for you to join us and take the extra step by putting a blue bulb in your porch light and leaving it on starting at 12:00am tonight until 12:00am on Sunday. 48 hours of shining blue in front of your home to show that you are aware and support those affected by Autism!

Here is a picture of Brycen in his blue and pointing to the blue porch light lit in his honor! Who will join us and honor his every day fight against Autism??

Blog post from another parent addressing "Expectations"

There are no words to express the emotions this post brought out in me...WOW is about all I can say as I really feel this mother took our life and just wrote it out on paper without even knowing me! Through this turn of events in our life, we have definitely learned to not take one word, one skill, eye contact, etc for granted. Like the writer said, multiple expectations are placed on a child as soon as they are born not only by parents, but other family, strangers, etc...and then when your child does not meet these expectations and are "left behind" by other children their age, it hurts so much knowing there is no specific path to follow to "catch" them up. No doctor can tell us one certain therapy or one certain behavioral or sleep medication will work...so we just keep going and going and going...and we feed off of those extraordinary things he does that are unexpected like the child in this story yelling out "a cow." So many skills come easy to children and the parents just cross that off their mental list and move onto the next one. Meanwhile, here is Brycen fighting and trying so much harder just to cross that one thing off of the list...the one thing that another parent of a similar aged child has pretty much forgotten about because their child did it so easily, without help, and it was so long ago.
I hope you enjoy reading this post as much as I did...and hope it gives you one more glimpse into the lives of Autism!

This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.

Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.
I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.
With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.
On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”
Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”
When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.
So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.

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!