Hope and Excitement in the "New"

Being the parent of a child with Autism means you have to do whatever you can to try to solve your child’s “puzzle.”  Each child is so different and there is no one identical treatment for all, so you have to be willing to try new therapies, new treatments, and unfortunately go through some disappointments, until you find the formula that works for your child.  The one that will make your child be the best they can be, and meet their fullest potential. 

Since our family is only 2 years into our journey with Autism, although we have tried quite a few treatments and therapies, we still have much to try and learn.  I know there is still a lot more in my little man that he is not showing us! 

I have read lots of stories about children with ASDs whose parents have tried a new treatment that helped them turn a corner and had a dramatic affect on them.  I recently spoke to a mother at my son’s school who stopped giving her child casein and immediately was amazed to hear him speaking more. I’ve read of diets and supplements that have helped children focus, and not stim as much.  Some parents have been blown away by how well their child has responded to Applied Behavioral Analysis Therapy and how quickly they have gained skills and make improvements.  I’ve read countless stories of parents amazed by the dramatic affect a diet or supplement or treatment has had on their child.   I still wait eagerly for this jaw dropping experience that something new will make a dramatic change for my son. 

I remember when Mikey was first diagnosed with Autism, and being told about ABA and how much this therapy will help my son, that in a year I was going to see such a dramatic change in him.  I was so hopeful and excited for that year to pass, so I can see all the progress Mikey would make. Unfortunately, the year passed all too quickly and I was left heartbroken and disappointed that Mikey’s’ progress was not as dramatic as I thought it would be.   When we started the gluten free casein free diet 2 weeks after Mikey was diagnosed, I watched every move he made carefully, and listened to ever sound, hoping for some words, hoping for a difference, but again was left disappointed.  I can go through the list of things from a new dog, to NAET, to the hopes of what school would do for him, but in the end they all left me with the same feeling, the disappointment and knot in my stomach, that, “ok, this didn’t work like I hoped, now what?”

Mikey has made slow and steady progress along the last two years, although I am happy he is moving forward I yearn so desperately for a burst of progress, something dramatic, something that will make me cry and shake with joy.  So we move on with hope to the next thing on our list to try, the “new.”

We are currently experiencing hope in the new as Mikey has some changes going on right now.  Last week we started giving Mikey Methyl B12 shots.  Methyl B12 is a supplement that has had a dramatic affect on some children with ASDs and has been known to increase language and focus during learning times.   I am keeping my fingers crossed and heart open, and praying for some big results.  Although, I probably tread a little more cautiously these days.

Another very big change that will happen after spring break, Mikey will be starting in a new classroom with a new teacher, one that is a better match for his needs.   Although I am nervous about how Mikey will react to his new surroundings, I am so excited for this change.  It is so very important that children like Mikey have a teacher that knows how to teach them, the way that they learn.  Let’s face it, with all the changes in diet and supplements that might allow these children to be more focused and aware, it means nothing if they don’t have the right person teaching them!  I am hopeful that this teacher will make an impact and difference in Mikey’s life.  I wonder if she knows how much I am counting on her to help our son?  If she realizes how I prayed every night that my son would get into her class because of her great reputation?  This is a new chance for Mikey, an opportunity to meet a teacher that might be the one that, “gets him,” and can reach him, to help him learn and grow.  I am most excited about this change, this fresh new start, and I only hope that this time next year, I really will see a huge difference, and will be amazed.

When it comes down to it, if these new things we are trying aren’t what produce the best results for Mikey, yes, I will be disappointed, but I will NEVER GIVE UP!  We will keep on going, moving on to the next thing until we find the right formula for Mikey.

Unfortunately, this is the life of most parents of children with ASD’s, we are desperately trying to help our children.  We are on a roller coaster ride of triumph’s and defeats, a ride that we didn’t buy a ticket to!  Most of the time, we have to do it at our own expense since insurance companies do not cover much of the treatments and therapies. Doctors expect us parents to accept the answer, “there is no cure.”  But that is something no parent should ever accept!  We pray for more and better research to find a cure or to find a way to help our children live a normal life, where they can be independent and have a job, a family, and be happy.  It’s sad that approximately 1 million people are diagnosed with an Autism Spectrum Disorder in the United States, and there is still not enough research, still not enough funding or support, and still no answers…

The Birthday Party Invitation....

When a birthday party invitation comes in the mail for most 4 year old children, it’s an exciting thing.  Parents might be happy to have something to do to entertain their child on the weekend, and children wait in anticipation for a chance to run around with their friends, and eat birthday cake.  For our family and probably for most families affected by Autism this isn’t the case. 

When a birthday party invitation comes for Mikey and I show it to him, he has no idea what it means, to him it’s just a piece of paper that he doesn’t know what to do with it.  When I tell him that we are going to a child’s birthday party, there is no response, no smiles, no excitement, because the truth is, he probably has no idea what I am telling him.  It’s similar to telling an infant baby that they are going to a birthday party, they have no understanding of what you are saying, but you tell them anyway in the hopes that one day they will learn and understand.

For me opening up a birthday party invitation is usually a cause for anxiety.  I immediately check to see if the location has a website to see what kind of place it is, and if I think Mikey may possibly find something to do there.  I start to wonder how many children will be there, will it be too loud? Will it be too crowded for Mikey? Will he be able to participate in any of the activities and have fun like the other children? Or will it be too advanced for him and will be he left to watch his dvd’s in the corner with Mommy and Daddy?   

Although we have anxiety about taking Mikey to these kiddie places, we always try our best to go, if we think there is a chance he may find something he likes, we try to give him the opportunity to be exposed to different situations.  We keep our fingers crossed that it will go well, and maybe just maybe he will have fun, and make a connection, or try something new. 

This weekend Mikey had his first birthday party in quite some time (besides his own which was a pool party and he loved!).  We had been invited to a few at the end of last year that we couldn’t make, so we were unsure how Mikey would re act to this one, now that he was older with new skills.  It was the child of dear friends, so we were happy to be there to celebrate and see some of our friends and family.  In the Autism world, Mikey would probably be considered to have some strong social skills since he makes beautiful eye contact when meeting new people, he will smile and wave, and if it’s a blonde woman will probably try to give her a kiss!  So we were hopeful that the party will go well.  We knew there would be familiar faces there for him, and when we looked on line there was a slide we thought he would like (although we didn’t realize that he would have to climb through a huge maze to get to it!).  Plus, it was a two year olds birthday party, so we figured things would probably be age appropriate for Mikey who is so delayed.

When we got to the party we were pleasantly surprised, Mikey broke free from my hands to climb up a inclined mat, up to a cushioned platform that was under a little roof almost like a tent.  Mikey loves those mat’s (the ones that look like gymnastics mat’s), so I thought, ok, they have matt’s so we should be good!  We said hello to a few people and Mikey was laying on the matt smiling.  Mikey’s Nonni was there on the other side of the party, so I picked him up and took him around to see her and say hello.  That’s when things changed quickly.

As I carried Mikey through the party with all the kids running around and the music blasting, I can feel Mikey start to get nervous and his body tensing up.  His smile quickly faded.  When we got to Nonni, he gave her a kiss as I asked him to, and when I put him down on the floor he took off running towards the nearest bench and started to cry.  He didn’t know where to go or what to do, I can see the desperation and confusion in his eyes as he ran back and forth flapping his arms.   I immediately ran after him and asked someone to get my husband who was chatting with his friends.  I sat down on a bench with him and made sure he had his blankey and his binkie.  I took his iPad out to play a movie for him.  My husband came and we took out juice, cookies, a ball we brought for him, anything we can find to try and calm him.  I sat next to him on the bench and held him.  He began to calm down a little bit, but I can see him looking around at all the people taking it all in.  Of course all of our family and friends were concerned asking if he was okay.  I tried to make excuses for his behavior, maybe he is tired, maybe it’s his stomach, but the truth is I didn’t know, I couldn’t ask him, he couldn’t tell me if the place was too loud, or if it’s too crowded for him, or maybe he just didn’t like the lighting, he has Autism, that is all I know. 

He didn’t stay calm long, he wanted to get down, from the bench but didn’t know where to go and started to cry again.  My husband and I took him outside of the room to a little hallway with it’s own cushiony bench and Mikey quickly calmed down.  He climbed up on the bench laid down with his blankey and his binkie and started to smile.   He found his spot, a quite place with a comfortable seat with no one around except Mommy and Daddy and now he was content. 

I could see the disappointment in my husband’s eyes, although he smiles at Mikey and calls him a little stinker and tells him how cute he is, I know that he wished more than anything that Mikey would have done well today, so did I.  I know my husband wanted to show off his son to all his friends, and show them how well he was doing.  He wanted to watch his son have fun with the other kids going down the slide and climbing through the maze, but instead, we were in the hallway watching our son have fun laying on a bench.    

The food was served and we decide to take Mikey back in again.  I saw the worry and concern in my mother in laws eyes when we got back in, I knew the concern is probably more for my husband and I then it is for Mikey.   My husband served himself and me a plate and I sat Mikey down next to me with his movie again, I was able to scarf down a quick plate before he became upset again and we were back in the hallway.

Since most of my husband’s friends and family were there I told him to go in and I would wait outside, a little while later my husband was back in the hallway telling me to hurry up and bring Mikey in that he was going to take him down the slide while all the kids were still sitting down eating!  While he was inside  my husband (his is by no means small!), had done a trial run climbing through the maze to get to the slide, to see if he could fit and take Mikey up! So we snuck back in and went to the maze, my husband helped Mikey all the way up the maze and to the slide. Mikey did great, my husband was so happy!  He was determined to bring Mikey down the slide at least once!  They got to the top sat next to each other, each on a slide and held hands coming down!  Mikey did great!  He got a little nervous towards the end because the slide was much faster than he was use to, but he didn’t cry and he made it down!  I picked him up and we quickly ran back to the hallway before the kids came back!  My husband was thrilled and so was I!  I was so proud of both Mikey and my husband for making the best of the situation and finding the joy in a stolen moment and a slide!

We came home that night exhausted and happy to be home.  Mikey was back in his safe place,  happy and content.  While I was lying in bed with Mikey that night, he fell fast asleep, and I took to my blackberry as I always do to check my emails (I have a slight blackberry addiction!). I was surprised to see an email from our friend whose son’s party was that day.  I opened it up and she had thanked me for the gifts, and then she wrote something that made me feel so much better.  She said “I know it’s not easy for you and really appreciate you taking the trip.  You’re a great women! Mikey is so wonderful. I love him.”   This email so simple and kind made such a difference to what happened that day.  I knew that our friends “got it.”

 As a parent of a child with Autism, I sometimes worry that when we do get invited to these parties and if we don’t go that our friends might not understand why, or what it is we are going through, or think that we are being anti social or over protective.  After reading her email, I knew that she understood what it meant for us to go, and understanding is something that every family affected with Autism appreciates.

Now to all of my friends who may read this and say maybe we shouldn’t invite them to our next children’s party, please do not feel that way!!  Please keep on inviting us!  We may not be able to make every party, because bottom line is, at times it may be too much for Mikey.   All we ask is for patience and understanding, and know we ALWAYS want to come, and just because this time he may not be ready, we know someday soon he will be!  So please don’t give up on us! 

A Happy Moment at the Party of my baby and me!

Today is World Autism Awareness Day!

                                        

Today is World Autism Awareness Day!  For a mother of a child affected this day brings many emotions.  I would be lying if I said I am glad this day is here, because the truth is I wish that this day didn't exist, because I wish this disorder didn't exist!  That being said, it's here and it does exist, so I choose to use it as a day to spread awareness and show support and honor my son for his strength in this fight.

What saddens me this year, is that as I read different peoples blog posts, facebook status's and tweets, amongst the Autism community, it becomes apparent that even on a day like today, there is a divide amongst us.  There are those who do not think this is a day to be celebrated, those who refuse to wear blue because they may not support the organization that started the "blue," and those who are wearing their blue and trying to make the best of this day.  There are even people who are trying to re name the day or change the color.

To me, this is not a day to judge each other, as we are all in this battle and struggle together, and everyone deals and copes with things in different ways.  You may not agree with how people show their support, or may view it as celebrating a terrible disorder, but if that is how they choose to get through this day, which I am sure no one wishes existed, than why can't we just support each other and help each other through.  This is day should not be about the "politics," of Autism.  It should be about being unitied together, standing strong in the battle, supporting our families and showing there is strength in numbers.

As I was writing this blog this morning, I was overcome with emotion, by the kindness of a mother fighting a battle of her own for her child, against Spinal Muscular Atrophy.  She is a fan of The Butterfly Mission facebook page, and learned about us through a mutual friend.  Today, she, "friended," me on facebook, and when I accepted, the first thing I saw on her page, was her reposting our Butterfly Mission post and asking people to visit the sight.  This simple gesture brought me to tears.  This mother, who has her own battle to fight, took the time today to support Autism.  Although our paths our different, our love and support, and determination for our children our the same.  This is what today should be about. 

Today I will cry, I will laugh, and I will be proud.  Proud of all the accomplishments my son made this year, proud of my family and my husband.  I will wear my blue (although I would love if the color would have been purple lol), and I will show my support.  I will pray for all the children and families affected, I will pray that by this time next year we will have more answers, and even more a cure.  And I will be keeping my eye out for anyone else who might be wearing blue today, and I will know they are standing by our side.