What is it like?

What is it like to have a son with autism? All I can comment on, is what it's like having Robbie as a son. Each child on the spectrum is very different- that's why it's a spectrum. Robbie is in the body of an 8 year old- a big 8 year old- but socially and emotionally he is somewhere around 4 years old, maybe. I won't lie- this can present somewhat of a problem at times. His meltdowns can appear bigger- and sometimes are bigger because of his size. He does not always know his own strength and many times doesn't understand how his own body works, moves etc. For example- many times Robbie slams door shut but really doesn't mean to- he just can't connect the dots between his force of action and what it will do. This disconnect appears through out his life. He knows his name is Robbie Hummel- however if you ask him what his last name is- he can't answer. He doesn't understand the question- one that school and home therapy has been working on for weeks. The irony is as the end of the school year approaches he will most likely "Master" this skill, only to lose it during the 2 week gap he has between the regular school year and extended school year. Robbie will be going to summer school for 6 weeks- which may seem awful- but necessary. He thrives on routine and needs constant reinforcement.
While Robbie has made tremendous gains in his speech and language he still has a robotic tone many times. He also gets stuck on a topic or movie line. This past weekend we explained we were going to his cousins house to swim in their pool. For 3 hours leading up to this event we heard " let's go, swim in the pool. I want swim in the pool. Come on let's swim in the pool. I want swim in the pool" etc, etc, etc. Of course to be fair that was almost matched by his 5 year old sister asking " Are we there yet?" the minute we entered the car and consistently for a large portion of the ride.  One of the hardest parts for me right now most times is listening to Robbie attempt to verbalize a story or situation. Tonight at dinner he was upset as he attempted to recap the timeout he received at school. While I know it was warranted, hearing him explain using his 3-4  year old verbal skills was difficult.. "Miss Kim yelled Robbie go to time out after threw green block. Go to time out Robbie." in tears. - Robbie always speaks in the first person regarding himself. He will not say I or me- it's Robbie. He has also started to complete tasks that he wants me to see- like making his bed or putting his clothes away- which is wonderful- and after I say " Good job Robbie" He will say- " yes it is a good job Mommy, yes it is a good job Mommy, Mommy yes it is a good job." using a Dustin Hoffman rain man tone. Bittersweet- it is. He also decided to "do laundry" over the weekend and poured bleach on his rainbow blanket. Then noticing the washing machine had clothes in it- decided to put the blanket in the dryer- with the other colored laundry. Yes- it was awful. He did admit to the mistake and seemed to understand when I showed him the bleach stained laundry- not to do that again with out asking for help.  Big boy task- which could have happened- and I 'm sure has happened in other households.
 He has begun to play a little with other children when we venture to the lake. This is a huge positive- however he will only "play" with children much younger and generally seems to prefer girls. Not to play any type of girly games- just the opposite. He likes to be chased and have squirt gun fights and swim- but with those who present no threat. Those who are too young to understand that he is different and are on his level socially. He has begun to understand that he is different and even started to verbalize this. All I can say- "you are perfect."  And again I am left wondering- what will adult life look like for Robbie. I am skipping puberty in my mind because- good god- it's an awful time for everyone! When Robbie says "don't leave me Mommy"- which he says often- even when I leave the room. My response is " I'll never leave you Robbie- you are stuck with me forever." and this may be true. An old friend came to visit recently and she asked what type of facilities there are for those like Robbie as he grows up. Of course I have thought about it- sort of- but honestly always imagine him home with us. He's 8 years old. I was definitely taken back by the question. Few have been that direct. But again all I can think is " I am never leaving you Robbie. You are stuck with me forever."  who knows what the future will bring for my boy as he grows. matures and perhaps will want a life of his own? For now- I look at all three of my children's beautiful little faces and can't imagine them anywhere but here- under our roof, in our home, sleeping soundly in their beds. ( Who am I kidding- sleeping anywhere- as long as they are sleeping.)

Don't judge- Sleep is key

I just finished reading a blog written yet another Autism Mom. Her son is now 21 years old and she discussed "age appropriateness" for her son. He loves sesame street and Elmo stuffed animals.  While it may be sweet for a 5 year old she does explain he can have items at home but a 21 year old can't wear an Elmo backpack- he would get bullied.  This is an example of how all of us have expectations regarding development. Your child crawls, then walks, then runs, etc.  For some of us with children on the spectrum , things are different.  We have struggled with sleep challenges for years. Yes- years. Robbie is 8 years old. As a young toddler , he was a great sleeper. He would walk himself up to bed. Ask for a story and a snuggle. I would kiss him goodnight and leave the room. He would sleep in his own bed, most of the time. However as he has grown , there is a large amount of anxiety regarding nighttime. He knows he needs his "nighttime juice" to sleep. He has even tried crushing the tablets of clonidine on his own when he had a long stretch of insomnia. He wants to sleep. The trouble involves him sleeping on his own. He needs a warm body next to him. It can be Mom, Dad, or his sister. However, if that  warm body gets up, even to go to the bathroom, he will wake and most likely , not go back to sleep, no matter what time it is. This leaves him exhausted. It also makes it more difficult for him to learn and absorb material during the day- which is already a challenge.
Yes, we have tried a body pillow. Yes we have tried a weighted blanket. Yes we have tried a sensory diet. Yes we have tried a dog. Yes we have tried and tried and tried behavior modification, walking him back to room and waiting for him to sleep. Creeping further away. Even locking the door.  None of these approaches have worked. So, after years of being exhausted, we have modified our approach. Someone sleeps with Robbie. I know there is a lot of judgment regarding sleeping in your own room. For us, getting a some sleep versus no sleep has taken priority.  So again, as an Autism Mom, I say don't judge.  It has taken me a long time to get to the place where I am no longer judging myself or feeling like a failure because our nighttime routine does not look like many others. I am sure it will not always be this way. One of the many things Robbie has taught me is there is no timeline for him. He does things at his own pace, in his own time. For now we roll with it.

The importance of............Movies

There is a great story that was released by Autism speaks and picked up by National news. It involved a Father and son. The son , of course, has autism. The father discovered that by speaking in the voices of his sons favorite movie characters, he was able to communicate with him. What a break through, for this family. A relationship was able to grow, hope was given, lessons were learned and progress was made.  Those who know us well and came across this story immediately though of Robbie. Movies play a gigantic role in his life. They are his friends. They make him feel safe, happy or sometimes sad. I have mentioned in past posts that broccoli is the only vegetable Robbie will eat. Every time he eats it, he mentions one of two movies where broccoli was consumed.  If I want to ensure he brushes his teeth well, I will start singing the song from The Muppet movie, where they are brushing teeth. We were looking at book this morning before school. I asked him to name an object in the book. Soccer ball- was the object. This turned into an entire script of a Backyardigans episode regarding soccer monsters and lost soccer balls. However, he did ask me if I wanted to play.
Lately, the most rewarding times are when I have all three kids in the car and the Frozen soundtrack plays in the background. I say in the background because between Lexi and Robbie, it can barely be heard. Of course a five year old girl singing Let it go, is "the norm" these days. But to hear Robbie's voice and see the smile on his face- he is participating in an activity that he has not been able to in the past.


Of course moving forward we're always looking for movies where healthy foods are eaten and important life lessons are learned. Decent soundtracks are a bonus because Mommy can only listen to "Let it Go" so many times before sanity will be in jeopardy.