Brady's Page

Raw Emotion

It’s a good thing my last couple updates have been on a positive note…because this one is pure truth and emotion.  If anyone is still reading, be prepared.

This world of autism, it has its ups and downs.  It seems every night now I cry myself to sleep at night.  I feel totally alone, alienated from the world, and like I have no idea how to help my beautiful little Brady.  So much is going on…increasing his ABA hours, new speech therapy, getting back into OT, starting preschool, establishing biomed…but I just don’t know that anything is helping him.  A year after diagnosis now, I just don’t feel like we have gotten anywhere.  In some ways, I feel as though he has slipped deeper into autism.  He doesn’t always notice other people now, especially kids.  I feel like in doing all the therapy we have over the last year, I have taken him out of the real world and removed his ability to socialize.  He has some meltdowns now, although it may just be the terrible 2’s catching up to him at almost 3.  I just keep asking myself over and over, when will my little boy emerge?

I never dreamt that on my son’s 3rd birthday, I still wouldn’t know what his voice sounds like.  I never dreamt that as I send him to preschool that my concerns would be – will he notice the other kids…will he play with a single toy…will he have any idea why mommy is sending him away?  I am so desperate for him to notice his little brother Ty.  Tyler is madly in love with his big brother Brady, giggles and smiles if Brady gets anywhere near him or accidentally touches him.  Brady has no clue that he even has a brother, doesn’t even notice Ty is there most of the time, and pays no attention to him when he does.  Will they ever have a relationship?  Will Brady ever make friends?  Why has this happened to us?  I wake in the middle of the night sometimes in hope that this is all a bad dream and that Brady is fine and developed to his age level…but this is not at all a dream.

Brady deserves everything life has to offer, and I can’t seem to give that to him.  As I read the MFE report our school district did on Brady as we prepare for his IEP meeting, they classified his communication skills at a 4-12 month-old level.  Brady is 35 months old.  I cannot begin to describe how hard that was to read…so I cannot even begin to imagine how hard it is for Brady to live.  He still has zero ability to listen and follow any direction, to respond to his name, to recognize most all words.  His receptive language (outside a few ABA programs) is nonexistent, which makes his life SO hard, and makes my ability to teach him impossible it seems.

I see the other moms at preschool chatting away about their beautiful children, or the moms in the neighborhood gathering outside talking…and I can’t even begin to make conversation with them.  I won’t lie…I want what they have.  I want my son to be able to enjoy playing, to be able to tell me he is tired or thirsty, to ask to play next door.  I want these things so badly for Brady that I can barely see through my tears to type this.  I have lost nearly every relationship in my life because all I can do, think about, pray about, dream about are my sons.  I know God has chosen us for this journey for a reason, but I need him to be clear with me the reason, because I am beginning to lose all hope and faith that I will ever truly know my son.

I am a stay-at-home mom, which I am grateful for every day.  But being that, I should be able to take my boys for fun adventures all the time…every day even.  But Brady’s schedule and lacking skills won’t allow that.  He is missing out because he is missing skills…that just seems so wrong to me.  This poor little boy is booked from wake-up till bath time 5-6 days a week…and I can’t yet see any results.  Are we doing the right things…are we making the right choices for him?  How will I ever know the answer?  When will I ever get to talk to my little boy? 

I spend hours every night doing paperwork to fight for Brady to have a chance.  If we do recover our little Brady, we are going to be so broke we’ll not be able to afford a vacation for decades.  Our en tire lives are consumed with autism.  We haven’t had a playdate in as long as I can remember (Brady and Ty or myself).  We aren’t close to the friends we used to have, or even most of our family anymore.  My parents are amazingly supportive, but they shouldn’t have to live through this every day over the telephone.  Why shouldn’t they get to just be grandparents and enjoy their grandsons like most everyone else?

I’m not writing this for pity…just to share my emotions.  I have always been an emotional person, but this world of autism is a roller coaster we can’t seem to escape.  I don’t know what the answers are…but I am beyond desperate to find them.  I just want my Brady…I want my Brady to have a voice…to have friends…to have the ability to listen and understand…I want my Brady to have everything.

Sarah and Jared:
I would like to thank you for being so brave to discuss Brady’s autism so honestly and openly in your blog—you truly inspire parents like myself.  The number of children being diagnosed with Autism—including my nephew, is at a staggering rate that the government or insurance companies can no longer ignore it.  It should not be such a struggle for parents to find ways of figuring out how they are going to pay for their child’s care.  I hope that you will find that you are not alone—and just by sharing your story, other families like yours will find some comfort in knowing they are not alone either

Sarah and Jerod,
You all are the best!. You are giving Brady a furture. You may think that you are alone, but you are not. You are angry and saddened that Brady has not made the milestones that you would like, but He is making proress. I know of families for what ever reason that are not doing all they can do for their children, and the children are paying the ultimate price. They are our future.
Brady,in his own way, knows that Ty and other chilren are around him. He just has to find in himself how to let others know he knows.
You both have givien of yourself and your family You will get the reward,just may be not the way you want to see it.
You should encourage family visits and play times with others. It will let Brady know that there are people that care for him. Modify grandparent time to fit him, but keep them involved in his life.
You guys are not failures! You are doing a wonderful job of raising Brady. You see the daily schedules and doctors visits, and it becomes overwelming. We see that. You need to brake away, may be an hour or 2 and just remember time for you! I see burn out.
Brady and Ty will be ok and they will love you even more for taking that time. Taking that time will empower not only Brady, but empower yourselves to see the milestones he has made.  We(the people ready your blog) give you strenght and the prayers…. Keep up the great job. God will give the resourses and the strenth. You are not alone…He is always with you.

I cannot begin to understand what you all are experiencing, but I will pray for God’s continued presence and glory to be revealed in all of this. The boys are beautiful and you are doing the best for them.

Hi Sarah,
Boy did I feel a rush of emotions when I read this
last post of yours. I felt every one of those same
feelings, fears, disapointments, pain like none
other. My son is 11 years old now and was diagnosed with autism at the age of 2. It was
so unbelievably hard for many years, it still
is. But it’s better, I just want to tell you
it does get better! My son’s schedule was much
as you described too when he was your son’s age.
Now he just started Intermiedate school (5th)
grade and is holding his own. He still needs help
but he has found his beautiful voice, just made
a new friend and amazes me every day with his unique way of relating and experiencing our world.
I know how hard it is, and exhausting. I just want
to say I am thinking of you today, and sending you
a prayer of hope and strength. Your family will get through it, even when you think you don’t have
the strength to get through one more day, you
will find it somewhere. Brady won’t let you not
find it, and he is so worth it!
Hang in there, it is such a roller coaster ride
and a journey like no other.
Blessings to you and your family,
Donna Loychik

Jerod and Sarah,

I have tears running down my face as I write back to you! My son is two and a half and is diagnosed with Autism. I share many of your frustrations, and I may not have any great words of wisdom, but I truly REFUSE to believe that Brady (or my son) will not show signs of improvement!  Maybe I am still in denial, but I have to believe they will improve!!!  I was soooo excited to hear that Brady has said words!!!!!  I am still waiting for my little guy to talk and you gave me hope that it can still happen!!!!!!!!!!!!!!
Please hang in there!!!  My thoughts and prayers are with you!!!!!!!!!

Sarah,

Have you thought of putting him in a social therapy like the P.L.A.Y. Project. My son sounded like yours when he was two and we put him into the program and it drew him out instantly. It teaches a child how to socialize and play. My son is now 5 1/2 and just started Kindergarten and is doing exceptional. He was initially diagnosed as having severe autism, and now he acts as if he has mild autism. He talks to people (which I never thought would happen), he laughs and jokes with us, he uses his imagination when playing. He notices our emotions and reacts. We never used ABA, and I have nothing against it, but I wanted him to have relationships, friends, and a way to socialize with people. Educationally, he is extremely advanced and he learned all that on his own without any therapy.

I think whatever you do, you have to realize and accept that he will always be a little different than other children his age. That was the hardest thing for me to do. I also used to cry daily and my body has suffered greatly from being so depressed and lonely for so long. I cannot help you with how to get past the loneliness because I am still there. All I can say is we (as stay at home moms with children who have autism or another handicap) need to learn to reach out to each other. We understand each other’s pain and can help with resources we know about.

I hope some of what I have said will be helpful.

Good luck…and you can contact me anytime you would like.

My son, Owen, who is turning six, was diagnosed at 2 1/2.  Alot of the things you share are very similar to the things we went through at this early stage.  I think you are on the right track. It is very important to keep him in all the therapies.  As Owen has got older he seems to be able to adapt to things alot easier.  He still has his weird tendencies but has made vast improvements.  One thing that has helped him alot, especially now that he is older, he goes to a typical school with typical kids.  It has helped.  My main concern is him getting picked on but the teachers are really good with him. I hope Brady will improve, which with strong, loving parents and a willingness to help him along the way, it is possible.  Whatever you do don’t give up.  He is too precious.  good luck

Gosh, this sounds familiar.

You are doing everything you think is best, and doing it to your utmost. Nobody can ask or expect anything more than that.

The progress can be slow, even glacial. The outcome can’t be known. It’s like going through the stages of grief while at the same time holding on to hopes and dreams. I don’t know if it’s a fair comparison, but I’ve heard it likened to having a loved one missing in action. But the successes can be so rewarding too.

It sounds like your plate is full (maybe too full?), but if you get a chance, you might be interested in researching autism assistance dogs - like seeing eye dogs, but trained for kids with autism instead.

Our daughter just got accepted with an organization that trains and places autism assistance dogs. We’re in the process of raising funds for the organization. (Here’s the blog we set up if you want to follow along: http://4paws4amelia.blogspot.com/2008/09/autism-service-dog-for-amelia.html)

Other than that, I know it sounds horribly trite, but hang in there. And thank you for sharing your vulnerabilities and expressing what so many other parents like you think but never say…

I have just discovered your blog, and am inspired.  How wonderful of you to put yourself out there for others.  If nothing else, we have to keep trying to get our message out there about our autistic sons. 
I have a 5 1/2 year old son, diagnosed with autism at 2 1/2.  He is now in a typical KG classroom, and you would barely know he is autistic.  I have done all the ABA, biomedical, IEP, etc. It will always be two steps forward, one step back, until you find what works for your son.  Don’t give up, keep trying, even though you are exhausted.  I ended up creating my own ABA program to fit my son’s needs (he was non-verbal, now very verbal,I found a fantastic doctor, and a terrific support group.) I still wish for the normalcy that comes with a typical child (I have twins, one is typical), and wish that I hadn’t sacrificed one child to help another, but I had to give my son the best chance I could, and knew my other son would be okay.  I believe that God was in charge the entire time and gave me the will to persevere.  You will be in my prayers, and I would be happy to share anything I can.  (I no longer use my ABA “stuff” if you are interested…)

If you and your husband are interested in churches in central Ohio that have special needs or disability ministries here are a few I know of:
Grace Brethren Church, Heritage Christian Church-Westerville, Worthington Christian Church and Vineyard Church of Columbus-Westerville.

Sarah,
We met at the Outing for Autism Seminar, and had a lot in common when we talked about our sons. That night, I came home and logged onto Brady’s page and it brought me to tears when I read your post. There are lots of difficult times, (I could identify with what you wrote in the last 2 years since Tyler’s diagnosis) but as Brady makes small steps forward, you will be so thankful for everything you are doing for him and your family. I would love to talk with you more…hope things are looking up and he is enjoying preschool.
Kelly

Sarah what you said is the truth and you need to know that it takes time. I know that if feels like forever, but it will get better! It will! My neice is six years old and has autism, she was first diagnosed at 26 months and for the longest time there was very little progress even with the ABA that we were doing. Keep up the hard work because he will know who is brother is and who the kids in his class are. Also know that once that starts happening you can do the things that you want to, like playdates and just taking your kids to the park. Another thing is to try stuff. A lot of times my family will not do certain activities that would involve my neice because they do not think she will like it, I on the other hand want her to experience so much so that she can learn on her own what to like. Even though this can be hard with Brady right now still try stuff, you never know what door will open! Stay strong Sarah!

Jerod and Sarah—Although I do not have an autistic child, I just lost my only granddaughter last year to a genetic disorder. And then I lost my husband of 33 years to cancer from the effects of Agent Orange exposure during Viet Nam. I am familiar with heartbreak and grief and can see that you are going through both of those with your precious son. My advice is to make sure that you take at least one night per week for date night for the two of you. Ask the grandparents to watch the kids so that you can spend time away together. The best thing that you can do for both of your boys is to keep the marriage strong. Don’t lose sight of each other. God will carry you through this.

Sarah,

Wow, I’m in tears right now after reading this.  It definietly describes my life right now.  My son was recently dx with Autism at age 25 months although I’ve known since 18 months.  The hardest part of my life is all the time that has been taken away from my other child.  I have a daughter thats almost 5 and she tells me I like the speech therapists better than her (talk about a heart breaker).  I’m really struggling to divide my time with my two children.  Autism is something you can’t begin to understand unless your living it.  I know you’re struggles of feeling alone.  I have ignnored so many calls from friends.  I do want to give you my opinion on therapies.  I think you must heal Brady’s little body (biomed) before any of the other traditional therpaies can work.  We have been doing Biomed for 6 months (I started before we even had a dx) and he has made huge improvements, everyone says he’s like a different child.  He still has major meltdowns though so we are considering Tomatis therapy because he has sensory issues (still toe walks).  Feel free to email me.  Laura

Sarah,

I just happened upon your blog earlier this evening by accident and did a brief scan of comments/entries and especially for this entry.  As a father of a child who has Down syndrome and is also a leukemia survivor, my wife and I have struggled for years to “do what’s best” for our daughter.  It has taken us years to find the right combination of nutritional supplements and therapies to help her thrive both physically and developmentally.

My wife and I have blazed our own trail to find what’s best and to get at the root cause of her problems.  The single best resource we have found is the National Association for Child Development http://www.nacd.org.  They have done incredible things with our daughter and I know they are doing miracles with those who have been diagnosed with autism, etc.

Our daughter has been on their program for over five years and I can’t even begin to relate what a life-changing experience it has been for her (and us)!

ANYONE, who has a child with any type of special need/developmental issue should look at them very seriously.  Unfortunately, as with the health industry in the US, there are certain institutions who control/monopolize a disease/condition and tell us what we must do in order to do the right thing. We have found that is the wrong road to take.

You need to get to the root cause and that’s what NACD has done for us.  My wife and I are happy to share our experience with NACD to any interested parents.  In fact, I have a DVD that the founder and president just recently sent me about Autism that I would be happy to share with anyone who is interested.

You have to look outside the box to find the people and solutions to these complex problems.

Just email me at

-Dwayne Martin