Give me the tools

When I was in Junior High my Dad built a large wood soccer kick board in our back yard.  I grew up in rural New Jersey and we had a good amount of yard space to practice any sport we were playing.  This wood back board became a tool to help me develop the skills I needed in the various sports I played.  I vividly remember throwing and catching lacrosse balls using the back board.  I remember playing one-on-one matches with my dad using the back-board as my goal.  It was a resource which I used to help me improve.  It also was a way to bond my Dad and I.  We spent hours outside together.  We would talk about sports, school, my dad would give me advice, and I would tell him goals I had for the future.  The simple tool of a back board was a special connection with my dad. 

My back yard in New Jersey.

When Max was born I was so nervous to be a mom.  I loved him with all my heart and soul, but I didn't know what I was doing.  Parenting was something new, and it was something I didn't go to school for.  I read books on parenting, on sleeping, on nursing and having a happy well adjusted baby.  But when Max started not hitting basic milestones, was socially behind his peers, and I was unable to connect with him I didn't feel like a good parent.  I failed.  I was failing my child.  I wasn't doing something right.  Max would spend hours screaming all day, would physically hurt himself, and was unable to communicate.  As much as I wanted to understand, I didn't.  I was frustrated, depressed, and worried that I was not a good mom. 

Then a miracle happened.  We talked to our pediatrician and explain the things we have been observing with Max.  He comforted us and told us there is help.  He also told us that we were not bad parents, but instead we are parents of a special child who is going to need our help to navigate through life.  At age 2.5 Max was diagnosed with Autism.  This was a year and a half ago. And since then I have been gathering tools that allow me to enter his world.  The diagnosis WAS NOT the end of the world, it was the beginning of a brand new one.  It was a world that I am so lucky to be a part of.  Autism has helped me reach both my children.  It has helped me be a better mother, wife and teacher.  

Max has been the best guide in the world.  He is a fantastic example of unconditional love, kindness, stubbornness, and devotion to his love for life.  He struggles, we all do.  But at least now he has parents who have tools to help him be successful!  Having two children with Autism gives us even more tools because what we have learned works with Max might not work with Dexter.  We have to be constantly learning. 

Autism isn't a label for my family, it is a tool, a guide, and a world that connects me to my boys. 

Heartfelt Mom Post - Being kind to one another

This weekend was hard.
Friday Max went on a wonderful field trip to the Natural Curiosity Museum in Lehi, Utah.  It was really fun for our family and he had a blast. 

The museum is loud, has a lot of lights, sounds, colors, and even though he had a great time I knew the rest of the day was going to be hard.  His brain was on overdrive.  He was overstimulated and overwhelmed.  One thing after another made him panic, cry, tantrum, and get upset.  He destroyed his bedroom, smeared poop on the walls (I will spare you the picture) and crashed by 7pm. 

Being overstimulated is something that Max deals with on a regular basis.  He has some coping methods, but he almost 4, not almost 12.  When he is really overwhelmed he flaps his arms, hits his head, screams, cries, and acts out.  Will and I try our best to prepare him for a situation, but there is no way we can predict how he will react. 

This is a GREAT video that shows what sensory overload is like. 
https://www.youtube.com/watch?v=IcS2VUoe12M

Church is very hard for him.  He does well in small groups, but the large sacrament meeting, with sounds coming from everywhere, bright lights, and a lot of people his senses are on overdrive.  Just imagine closing your eyes in a large room.  There are sounds everywhere, feet moving on the floor, people talking, shifting of body parts, the building cracks and noises, etc.  Max hears and sees everything, and it is all very hard on his brain. If he gets to overwhelmed he then either acts out, cries, runs away,  physically hurts himself or others, or tries his best to use coping skills to deal with the situation. This is what Autism looks like.  This is what Max deals with daily. 

So if you see us at church or any social event it might look like this: playing with trains (toys), he might be laying on the floor watching the wheels to calm himself, letting him jump up and down, spin in circles in the doorway or hallway of a building, letting him play on the iphone or ipad, allowing him to use his voice to tell us what is wrong.  He might repeat the same thing over and over and get louder and louder, and of course we will explain to him what is appropriate for the situation but we can't predict his outbursts.  He might hit his head with his hands, or run from us even after calling his name over and over.  This is all normal. These things are not an indication of our lack of parenting, this is us trying to help our child cope with the world.  Because his world can be lonely, scary, and really hard.

Yesterday I put on my facebook:  Be kind to one another. Judging hurts at any age and in any situation.

On the outside Max looks like a typical (almost) 4 year old.  He is taller than his peers.   He is now in the 100% for height and the 80% for weight.  He wears boys clothes not toddler clothes anymore. He is expect to communicate like a 4 or 5 year old.  But he is about 2 years behind those of his peers.  People stare at him, and that is okay, he doesn't notice for now.  But he will.  And Will and I notice, we notice the whispers, and the faces of those who are judging the way my child is acting.  Will and I have heard it all, we have watched adults and children laugh at Max.  It hurts.  Max one day will notice, and we will be there to love and support him.  To tell him how special he is, how smart he is, and how lucky he is to have so many people who DO support him.  I know we have so many who support us, who care for us, and pray for our family, but that doesn't take the hurt of that one judgmental comment away.  Will and I are human, trying to be super heroes to both our special boys. 

Our parenting style has to be different, it has to look different, and that is okay.  Just because we are doing things our way doesn't make it wrong. Max has taught me to be more compassionate, to care more, to be more understanding of all people.  I adore him and his unique traits.  I have learned more about trains, firetrucks, Pocoyo, and construction sites than I ever thought possible.  I have also learned how valuable friendships are and how important it is to have a village to help raise a child.