Happy Tears and the Stimmmm

I have made a few unsuccessful attempts of getting video clips of Robbie while he is in "super stimm mode." The reason I am unsuccessful is the minute he notices that I have a camera in hand- he immediately poses and says "cheese." The next statement is " let me see the picture." Interesting that he can stop the stimming behavior so quickly but also can't seem to control it as well. The stimming has been out of control for the past week or so. Jumping, hand flapping, hand wringing, eyes twitching, repeating "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE"
all simultaneously.  Additionally we are once again engaged in episodes of The Backyardigans and scripting episode after episode, again and again. At home we have done a lot of deep breathing, "hands down", swinging and spinning in his indoor swing, swinging outside and swimming.
The swimming brings me to an incident at the lake. I watched as Robbie swam towards a group of older kids. They were splashing each other and swimming around in the water. Robbie sidled up to them and watched for a minute. Then, he began to splash the kids as well. Sure that is would end in disaster I asked Rob to keep a close eye on him as I had the baby crawling deeper, deeper and deeper into the water- not realizing he can not yet swim. ( He thinks he is a big kid like his siblings, but he is just hitting 1 years old.)  Rob decided to swim out to where Robbie was and after exchanging a few words came back over toward the beach.  I gave the thumbs up and got the same in return.  After talking to a few people at the beach Rob returned to explain that he had explained Robbie has Autism to the older kids and reminded Robbie he needed to introduce himself when he met new people. Rob had also thanked the parents of the kids for their response.  The kids were welcoming. Three young teens, 2 boys and a girl, were kind. They included Robbie as they splashed at each other. Robbie was engaged and played in a way I have rarely, if ever seen , especially in a group of strangers. I wanted to cry- happy tears - because this was such a huge step. Social interaction is an enormous hurdle for him.  We have tried social skills classes and play dates with classmates- some of which were mildly successful. To see him happy, engaged and playing with other kids.........................happy tears!!!!!!

Pity party for one

I love my son. Here is where it gets hard. Sometimes I  feel resentful. I feel sad. I feel angry. Never at him. Honestly- never at him. I may get really, really frustrated with him, but I never feel resentful towards him. Sometimes I feel resentful towards you. Those who have not dealt with autism and don't really understand it. Those who try to understand it- but just don't. Because , how could you? You don't know. We all worry about our children. I worry about all three. I worry the most, about Robbie.
My poor brother felt my wrath late last night. He asked how we handle certain situations and gave a suggestion regarding something else to try. I think I may have said- a little too harshly- yes we have tried that. The truth is- I can say with almost 100% accuracy- we've tried it- but I do welcome new ideas and suggestions. Unfortunately for him, I was in the middle of a pity party for one. A few weeks ago an acquaintance was explaining how he had a friend who has a child on the spectrum and this friend may have a good neurologist referral- or other good information. I honestly always welcome any advice, referrals, information- etc. When he sent me the information a few days later- I felt a combination of self righteousness and sadness. The referrals were doctors or places we've already used.  Once you hear the words- Autism spectrum disorder- or probably any disorder, as a parent you dive in head first. You read every book, article etc. You reach out to those who are dealing with it. You join 15 different online support groups- because really , who has time to go to one in person. You try diets. You try different doctors, different therapies.  Then you pause.  You cry. You reassess what has worked and what has not. You reengage and try it all over again. You get mad. You get mad at strangers who look at you with pity.  You get mad at friends and relatives who love you and try their best to give advice. The truth is- no one knows what to say or do. The truth is we all have our life stressors, issues, problems, baggage etc. The truth is everyone's "stuff" is just as important and difficult. So to all my friends and family- thank you for all your words of wisdom and hugs of support. Sometimes I need to pause, take a breathe and remember how lucky I am.  And to my brother, sister, my husband and all those close to me- thank you for listening. xo

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.