Puzzle Cake by Twins Plus One Goodies

Hi there!  I am Heather Harper from Twins Plus One Goodies.  Autism is what introduced me to Kim a year ago and she helped change my life for the better.    SO... I owe her big time.. I was honored that she thought to ask me to participate in this months Autism Awareness guest blog posts.

Autism!!!  Autism...  Autism????  Wow, what do I say about this.  I was stumped.  I must have written down, sketched out and planned 8 different things for this post.  Nothing  I thought about was good enough to me.  I woke this morning to an idea that kept me in the kitchen ALL day long because I wanted it to be perfect.  I asked for kitchen mojo from friends.  I asked for prayers that everything went perfectly.  I prayed.  I said to myself, "I am going to create something so great, something that will make people say wonderful things.  I am going to give birth to this new creation and everyone will be jealous and wonder why they don't have one this beautiful and awesome."  I did everything right plus some.   I ended up with two creations. 

One was an adorable little individual puzzle stack butter cake with nutella filling topped with vanilla buttercream.  It came out just like I wanted and tasted great.  Pure and simple (based on Autistic puzzle logo).  I was so happy.   I call it "The Cookie Puzzle bite size cake".

The other item is what some call a cake...  I immediately was unhappy.  What did I do wrong?  I did all the steps.   I did what I was suppose to.  I didn't take short cuts.  What happened.  Why did my creation come out this way?

After staring at it for a while, I decided I knew why it looked like it did.   It was special and it was trying to tell me so...

I sat down and started thinking which can be dangerous. I was feeling frustration over a cake that I knew should have been perfect and I was MAD.  I have a nephew that is Autistic. I love him dearly.  I can't even imagine what it is like to be a parent and be told your child is autistic.  I think maybe they started off feeling like I did about the cake - but then mine was a just a cake, theirs is a child to raise for life.  NO.. I have no idea.  I admire parents of special needs children.  They are the special ones because not everyone could handle this job.  My brother can.  My sister in law can.  So I asked my brother to write a little something about what its like to be a parent to an Autistic child.  I hope it lets you see just how hard a job it really is, especially when still no one knows what causes it.    Before his post.... because I know you were wanting to see...

This is the cake... (its ok to gasp.. I promise).

The idea was great, the execution was a total FAIL.. I put a round cake on a square one.. I put hand cut colored puzzle pieces inside the cake...  This was to show that the outside of the cake may be awkward and not fit right, might scare you from getting close - but when you cut it open you see greatness.  You see pieces that you didn't know were there and you taste it and know that a lot of love went into that.   It was made known to me that Kim and I both love Nutella.  So the center of the cake is Nutella - purely amazing.  Just like an Autistic child... the outside might seem awkward and appear that something is off, something isn't right.. but if you take the time to look inside, to get to know an autistic individual you will see the purely amazing character that they are and you will love them more for it.      

This photo is of my brother Felix and his son Stewart.  He is six.   He is amazing.. He is beautiful.. He is loved and is loving.. He is my nephew (brothers son) and he is Autistic.. OMG I could just squeeze him...

From my brother, Felix!

My name is Felix and my son Stewart is Autistic. He is 6 years old. When he was about 2.5 he was diagnosed with Pervasive Developmental Disorder (PDD-NOS, which I believe is what doctors tell parents they think don’t want to hear their child is autistic, but that’s another matter). Stew was later tested again at 4 and given the diagnosis of Autistic (the high functioning sort). Stew’s largest deficiencies are in social interaction, speech and language. He talks and does a fair job at communicating. He’s been in speech therapy since before his initial diagnosis and on and off OT therapy since (pediatric OT therapists are much rarer than speech therapists). I think that’s a fair amount of background.

I knew Stewart wasn’t what I would later learn is termed Neurotypical (NT) fairly early. Once he received his initial diagnosis of an Autism Spectrum Disorder (ASD), I went through what could be best described as grief. Looking at the 5 stages of grief (Denial, Anger, Bargaining, Depression, Acceptance), I went through all. Initially I thought he was ADHD and had delayed speech development (I have a background in psychology but little exposure to autism). I believed that his diagnosis would get him the help that he needed with his speech, which it did. I experienced a brief bout with Anger when considering what caused this (nobody knows), but I soon realized how useless this was. I could have easily blamed myself or my wife for his condition, but this was useless and wrong. Accepting that neither my wife nor myself were to blame was a big step towards acceptance.  I consider my thinking that if we only get him on track with his speech all this will go away and the like to be Bargaining. Then I started attending his therapies, observing other kids with similar diagnoses, and NT kids. When I accepted that my son was Autistic, the Depression came. The realization that my son would always be Autistic shook me. I’m not big on expectations, but the few I had were shattered. I never expected parenting to be easy, but this wasn’t what I signed on for. My Depression didn’t last long. The realization of Autism, crushed expectations, and understanding of the trials ahead all happened over the course of a few days or hours (my memory is a bit fuzzy on specifics). I do remember that at one point I cried. I was alone and overwhelmed with the weight of it all, and I just cried. I didn’t hold back (I was alone and wouldn’t have done this with witnesses present). I let it all out. Then that was the end of it. I wasn’t going to be depressed. I wasn’t going to worry about how much work lay ahead. I was just going to (borrowing from the movie Glory) ante up and kick in. This is my life now. I reached Acceptance. That was just the starting line.

Since then life has been a series of ups and downs. I’ve always believed that as we go through life there are always good and bad things and our attitude is determined by the things on which we choose to focus. I try really hard to focus on the good things. Stewart is a blessing to me because I choose to see it that way. I’m not one of those who will tell you that I wouldn’t have it any other way, but I cannot wish for something that isn’t possible. I just have to accept Stew for who he is. As much as I have to teach him, he also teaches me. There are novels that could be written about this, and I’ll try to focus on a few gems that I hold on to. The first of which is, “That's not my problem.”

Stewart’s exhibits some odd behaviors (that’s putting it lightly). In public they can be downright embarrassing. I had to quickly learn to let go of being embarrassed or else I’d never venture out in public or worse lose my $&*^ with my son. I’m not saying that I let Stew behave as he pleases whenever he pleases, but most of his behavior is harmless. I am considerate of others and do not want my child’s behavior to ruin someone else’s good time, but I’m not embarrassed by him. I correct his behavior using a variety of methods, but if his behavior continues to disturb others we remove ourselves from the situation. Over time Stewart has learned that Dad (and Mom) will follow through with consequences. I study his behavior and attempt to teach him appropriate ways of acting and interacting in public, but I’m not embarrassed by him. Embarrassment stems from being concerned about what others think (i.e. They are bad parents. That kid is out of control. Why don’t they just...), but “That’s not my problem,” I have too much else to worry about to concern myself with what others think. If I let myself get embarrassed I’ll overreact to the situation and ultimately do more harm than good, especially with regard to Stewart.

What is my problem is helping Stewart become the best Stewart that he can be. The cornerstone of that begins with how I view his diagnosis.  Autism is not an excuse; it is a tool in understanding Stewart. I know that all autistic kids are different and respond differently to the various behavior modification techniques out there. Traditional methods of discipline are usually counterproductive with Stewart. Most of which I equate to trying to put out a fire with gasoline. On the surface much of the behavior looks like bad parenting and an extreme case of a spoiled brat. Molding Stewart’s behavior is challenging to say the least. It’s hard and exhausting.

Emotional expression, or more appropriately the lack there of, is a hallmark of Autism (with the exception of tantrums and/or meltdowns, and there is a difference). Stewart was no exception. I express my love to my children and spouse in many ways the least of which are saying I love you and hugging. For the longest time Stewart never exhibited any understanding of love or at least the way I understood it. I taught him to hug and to say “I love you” or “I love you too” after we told him “I love you.” His responses were mechanical and lacked feeling. The lack of emotion was highlighted even more when his younger sister came along and started expressing emotions. Upon our return after their first overnight experience away from both parents, little sister went bonkers screaming “MOMMY!” rushing up to hug and greet us. Stewart was playing on the computer at the time and stopped for a moment, came into the other room and said, “Daddy, I found you” with no emotional intonation then returned to the computer. That was his way of saying I love you. I could have accepted this and stopped hugging him because he was uncomfortable with it. I could have stopped saying I love you because of the pain I felt when I knew it didn’t mean the same thing to him, but I didn’t stop. I could’t stop. The way I treat Stewart can’t depend on his responses. I never know what Stewart is thinking or feeling. I have to believe that if I keep plugging away, he’ll come to understand and feel love (even if he can’t express it).

In closing, being the father of an autistic child is the hardest most rewarding thing I’ve ever done in my life. If I were to give any advise, it would be to not give up. I didn’t know if Stew would ever reciprocate love in a way that I understood, or if I expressed it in a way that he understood, but I never stopped trying. I never gave up. I am constantly pushing him out of his comfort zone forcing him to engage in activities he wouldn’t choose. He gets comfortable with an activity, a movie, a show and doesn’t want to explore anything else, but I force him to expose himself to the unfamiliar. I intentionally frustrate him at times to teach him self regulation. I’m sarcastic at times and he’s starting to notice when  as he puts it “you’re just joking.” He is Autistic, but I’m not letting that limit his potential. I firmly believe that with enough hard work he can do anything. If I didn’t push him, I’d be stuck listening to Sponge Bob 24/7 through the TV and echolalia, his hair would never get cut or washed, and he’d only eat chicken nuggets and french fries. I will never say he can’t do something because he’s autistic. 

This is a snippet of my journey and how Autism applies to my son. My heart goes out to others facing their own challenges and know that others have much more difficult situations. In the end all we can really do is love our children and do our best to help them maximize their potential. We are flawed and will fall short and make mistakes, but we must never give up. We must learn from our mistakes and keep moving forward. Having children has helped me understand more clearly what is unconditional love. Stewart is who he is. I love him, and nothing can change that.

 

 

 

 

I thank my brother for sharing this emotional story.  I thank you Kim, for letting us share a bit of our family with yours.  Thank you for spreading the word about Autism.  If you are able, get out there and spread the word too.    Come on over to Twins Plus One Goodies and I may have pictures on how I made these two jewels. :)

Thank you

Heather