A little reminder to myself

To be honest, the last few weeks have really been wearing on me. Robbie's behavior is exhausting, both physically and emotionally. Every comment is 5 decimals too loud. Every time he hears no or is redirected there is screaming and sometimes hitting. Hitting could involve the wall, an object or a person (me).  The stimming behaviors are constant. Running back and forth saying "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE."  Scripting movie lines, a sentence from one and the right into another. The constant destruction of property. Emptying all the hand soap containers and refilling them with water. Pouring water in the ice cube container so they all freeze together. Pouring orange juice in his crocks and then walking through my in-laws rental property. ( which meant scrubbing carpets on hands and knees.)The only things that help are swim time and Dad putting Robbie in time out. Even then, he is down right nasty a lot of the time. We recently had a burst of language and when that happens behavior problems seem to trail behind. As Robbie gets bigger, so do his behaviors. I have to remind myself that while he has the body of an 8 year old, he has the emotional and social ability of someone much younger.
 I have also noticed his increased frustration on a daily basis at just about everything. He talks with an angry tone and has been yelling at everyone and no one. While at the lake this week he was talking in his angry voice to himself and it seemed to everyone around him. A little girl ran by just as he was at the peak of this performance. She stopped, kicked water in his face, and ran away. Lexi, after witnessing this, came running up to me to tell me what the girl had done. I wasn't angry with this little girl. Robbie was being inappropriate. Perhaps I should have gotten angry and pulled her aside to explain what was going on. Robbie didn't seem phased at all by a little water in the face and continued with his ranting.  I know part of his frustration stems from not being able to connect with other children. He clings to Lexi, who at this point is searching out friends of her own. He is so very aware of what's going on around him, what's being said around him, or about him. Recently he told me "that's not nice." When I asked why, eventually I determined he did not like me talking about him. Fair enough. I hate when others do it as well, and shame on me, I know better.  At dinner I asked him if he was with me, present. He responded by saying "I'm trying Mommy."  This I know to be true. He is trying really hard.  I shared a picture a friend put on Facebook- "My child is not giving me a hard time. My child is having a hard time." A good reminder for myself. For Robbie every day is really hard. For me, some days are just harder than others.

Quit you're whining............and give yourself a break :)

I have recently joined many different online Autism support groups.  As I read some of the posts, I feel frustrated for many of the parents posting.  So many of the complaints are members talking about the difficultly of their 3 years old with potty training, or their 2 and a half year old being out in public places. I know many, many people with Nero-typical children who struggle with potty training-at much older ages and most people who struggle with toddlers in public settings for any length of time. No one said raising children would be easy. Many of us- myself included, did not realize how difficult it could be.
Lexi was in a pull up at night time until a few months ago - at age 5. Many of her friends are still in pull ups at night. As one friend said the other day- there is a reason they make them in those sizes.  Robbie was not fully potty trained until age 5 and had a pull up at night until 7 and a half. At that point, he did not want to wear a pull up. Fortunately,  he was able to tell me.  I think many times, we as parents are in a rush. We want results. That is how we have been programed. Parents- give yourself a break. It will happen.

Recently we have been dealing with increased aggression and extremely high anxiety. This means Robbie will have an angry voice and hit or kick things to show he is unhappy. Additionally , every request is responded to with yelling and extreme anxiety. For example- Robbie would you some waffles for breakfast? The response is a very loud "NOOOOOOOOO, Mommy!!!!! I am not hungry. No waffles!!!!! No waffles!! NOOOOOOOOO!!!!!" Only to hear " Mommy can I have some waffles?" a few minutes later. It's as if it takes that long for Robbie to process the information. This morning I asked Robbie if he wanted a banana- by showing him the fruit as I asked. His immediate answer was "Nooooooo!!!! No banana!! " Pause.... "Banana?  No, Apple." just as I was washing one for he restated his request. " No apple, apple juice. I want apple juice." It was a reminder to me of how frustrating life must be for him. Sometimes he just can't get the request out at all and may be given something he does not want, with the inability to ask for what he truly desires. UGH, Can you imagine?  Now , imagine this type of response for every question or request.  Some days showers are met with the same anxiety and volume- others  they are welcomed, as water has always been his happy place.
I am not going to pretend that life with Autism is easy. It is not. It is difficult. It is stressful. It is exhausting. But sometimes so is raising children overall.  It is also wonderful. It is rewarding. It is the most important thing you can do.  Life has ups and downs.  Honestly some days are great and others make you want to crawl back under the covers. But again- Parents- give yourself a break! This is a marathon, not a sprint!

Why is Robbie different?

I knew it would happen. One day Lexi would ask why. Why is Robbie different? Why does Robbie have Autism? We have always been very open with Lexi about Autism, what it is and how it affects Robbie. However, I never wanted any of these conversations to hurt Robbie's feelings. Last night at dinner Lexi said " I hope Timmy does NOT have autism." Honestly- I may have said " me too" or just nodded my head. I caught  myself and looked at Robbie- who covered his ears and put his head down. My heart broke. We hurt his feelings.
Later, I told Lexi that she can always talk to me or Daddy about Autism but we have to be careful not to hurt Robbie's feelings. She responded by saying- he didn't cry- so his feelings were not hurt. Such a tough concept for a 5 year old. The conversation continued with Lexi asking why Robbie is different, like the boys in her class with down syndrome. Why do we have to have Ms. Yevette ( Robbie's ABA therapist) over all the time?  Why can't he be normal? Different is hard for me. I don't like different. Why can't he be like me... and Timmy?  I reminded her about how much she loves her big brother. How much we all love him.
Toni Braxton- famous singer- who has a son on the spectrum was quoted as saying  God punished her for having an abortion. The punishment was a child with Autism. How sad for her to feel that way. There has been a lot of discussion about her comments and while she was once a voice for Autism speaks, I hope she is no longer. Robbie is a gift. He is loved and I am thankful for him.  However I will say - again, as I have posted this opinion- Autism does not define who Robbie is. It is a disability. If I could remove it- I would. Autism makes life harder for my son. He is funny and smart- and sometimes hard to understand. Sometimes he does not feel comfortable in his own skin. Someday, people will be cruel.
Recently a friend asked me how other kids treated Robbie- if they were accepting or excluding.. Again- a comment or question from a friend that took me by surprise.( And- again- as I write this blog, my hope is understanding.) The comment made me think- one of the many reasons I love the program Robbie is in is because he is safe. He is surrounded by those who understand. His classmates are on the spectrum. There is plenty of support staff. The school offers social skills- to - in my opinion- allow the "regular" kids an opportunity to interact with those on the spectrum. Those they see every day, walking down the halls, using the same bathrooms, and sharing a lunch and assembly with. I fear a time where Robbie is forced back into his district school- where there is no place for him. Where he is the only one. Where he is excluded. Where I may lose my cool if he not treated kindly.
As I write this- Lexi has looked over my shoulder asking about the contents on the page. She sees her name- multiple time- and popcorn words. I wonder if Robbie sees his name- and words he can recognize. He can not tell me- yet. He is 8 years old. Lexi can- she is 5.
 While there has been much progression for Robbie in terms of language and communication, it can still be a challenge. Pictures are still helpful. Many times Robbie responds without really hearing what has been said. This morning Robbie had taken a bunch of loose change from a cup and put it into small ziplock bags. I told him he could keep the money but asked that he keep it far away from Timmy.  Timmy is still at the age where he puts everything in his mouth. The response I got was yelling no and him throwing the bags all over the floor. Exactly what I did not want to happen.  Honestly, I don't think he understood my request. He assumed he was in trouble for taking the money and putting it into bags. ( He has gotten in trouble before for taking multiple items and placing them in multiple baggies. It is wasteful and honestly, annoying because I end up having to put all the items back in their place and throwing away piles of baggies.) These types of exchanges are common. There is a lot of yelling- from Robbie and a bit of frustration at times from the rest of us. 
Overall I am reminded to slow down. Take a deep breathe. Explain things more clearly to Robbie and remind Lexi that different is not bad. Different makes life interesting. What kind of world would we have if we were all exactly the same?? Boring!!!!!

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.

A Norman Rockwell Night

I had been working on this piece discussing how scary the prevalence of Autism is today versus 40 years ago. The numbers are staggering-
In the 70s,  ASD was estimated to be about 1 in 10,000. In 2010, the rate of ASD for children born in 2002 was 1 in 68 –(1  in 42 boys).   NJ has the highest rate in the country. 1 in 45 for children and 1 in 28 for boys.
I picked the 70's as a starting point because that was the era in which I was born. I have heard my mother say that she never saw Autism back then and I wondered if it was hidden, swept under the rug with mental illness, or truly a rare occurrence.
According to the data- it was a rare occurrence. I have many more thoughts on that subject- for another time.

So moving on we experienced what I'll refer to as a "Norman Rockwell" night. All five of us gathered around the dinner table- to a meal that was actually planned and cooked by me. Our daughter began by asking us to share our favorite part of the day- a tradition- when we all actually get to sit down for a meal together. She went first talking about the play date she had after school and the various "Frozen" themed activities they had partaken in. I asked Timmy- who of course can not respond at 8 months old. I did on his behalf discussing his wonderful bowel movements, glorious bottles and lack of naps. Next up was Robbie. I asked Robbie- even prompting him with the craft he made, and had shown me, at his after school social skills class. Expecting no response as usual and prepared to move on to Dad- Robbie said " in my backpack. Dad, let me get it." and got his newly made bracelet from his backpack to show his father. It developed into a discussion regarding the colors he used and with pride he displayed what he had made. Robbie has never answered that question- What was the best part of your day? Even with prompts. So while I did give him the suggestion- he actually used it and gave us a glimpse of his day. A glimpse is a beginning though , and I'll take it. It is progress!!!!
The wave of emotion I felt was overwhelming and my eyes welled up with tears. I told my husband I thought I might really cry. Later while all the kids were in the playroom he said" Can you believe this family we have?" It was an evening I wish I could freeze forever.

For some laughter at the world of Autism - at least in our family, I'll give you a snap shot of our crazy stress filled morning. At 8:00am I get all three kids into my car to drop Lexi off at school and make it back in time for Robbie to get the bus around 8:20am.  This morning while loading the kids in the car- at 8:05am I realize there is no car seat base for Timmy. Clearly I can not drive anywhere without a base to clip his seat into. Remembering Rob had taken my car on Friday night to the father daughter dance- and realizing he had removed the base to make room for an extra booster seat for a friend of Lexi's whose father was sick and unable to attend.  I frantically rummage through the disaster we call our garage looking for the base, texting Rob because I can not find it. He responds that he has it, along with the other base  to which I say- a little too loudly " I'm going to kill Daddy."- (Probably a few times as I call a friend in a panic, hoping she can drive Lexi to school. She could- all was saved.) After Lexi is picked up, I grab the car seat containing my 23+ pound 8 month old, Robbie's hand and  head back inside. Robbie says " I'm going to kill Daddy."  I chuckle. The bus arrives and as we walk out the door , Robbie smiles and says " I'm going to kill Daddy."  He thinks it's funny. OMG- all I can think at the moment. What if Robbie gets onto the bus and mutters over and over  "I'm going to kill Daddy." - or worse yet gets to school and does the same thing? Will I get a phone call or god knows what kind of visitor inquiring why Robbie is saying he wants to kill his Dad? Honestly- I am laughing to myself on one hand but feeling a little nervous as well. We had an incident in the past where he was talking about hurting someone and while we knew he never would and must be repeating something- it made us pause for fear of what others might think. I explain what happened to bus driver and aide- just in case- and they laugh along with me. Just to be safe I also send a quick email to his teacher- who also thinks it is hysterical.
I  feel blessed to have this beautiful family. Autism and all. And no, I did not kill Daddy. Lexi also asked me after dinner if I still planned on it.  Guess I need to watch what I say a little more closely. :)
 To Rob- xxoo