Teaching opportunities

Like most parents, I find such joy in "teaching opportunities" with my children. The times where you feel what you are explaining to them will shape them as a person. Those "wow, I am a parent" moments. With Lexi, those times have been abundant. She is curious and extremely verbal- so questions come daily. However with Robbie , those moments are more rare. The other night I had one of those moments. I was putting Robbie to bed.( Usually either Rob or I lay with him and put something on the TV that we think he will find boring. He usually has had melatonin and falls asleep. ) On this night he was tired and I didn't feel he needed melatonin. We were laying in him room watching Extreme Weight Loss. The person featured was missing an arm. I missed the beginning of the program, but it looked as if he had been born that way. Robbie said "no hand, where's hand?" that progressed to "No arm. Look boo boo." While these words may not seem like much - especially for the average 7 year old, they were amazing to me. I explained that some people only have 1 arm or leg. People can be different. This boy does not hurt, he simply has 1 arm. We continued to talk about the boy and people in general. A real conversation!!! Robbie was engaged, asking appropriate questions, and listening intently to my response. I turned the TV off and he fell asleep. A beautiful night. ( Even if he did wake up at 3am).

Tired and Frustrated, again

The last two nights have been rough. Robbie has been extremely stimmy and not sleeping- which means I am not sleeping either. Wednesday he woke up and was whining a lot before school. Not a full cry, but he let me know he was not happy, with few real words. That day he came home with a bad report from school. He would not sit still for work and cried quite a bit. After going to the lake that afternoon, I was sure he'd have a good night, but watching him at dinner did raise a red flag. His eyes were dilated, hands were wringing , and he could not sit still. Wednesday night he woke up at 2am for the night. He complained of stomach pain. By 4am I put a movie on and gave him his IPAD, and then went to make coffee. Thursday he had a better report from school but was crying/whinning and looking for lots of attention when he came home. If asked "what is wrong, what hurts?" No response but a whine. Thursday night- same drill. Up around 2am for the night. Again complaining of stomach pain. He asked for tickles on his tummy- but it did not help. The frustration of Autism. His communication is once again limited. Something is obviously bothering him and he can't verbalize it. A similar situation happened last week at dinner. Rob and I were asking Lexi about her kindergarten testing. She was explaining the questions they had asked, name, address, alphabet, counting, etc. I asked Robbie how his day was and he started to cry. A real cry. How frustrating must it be to hear his 4 year old sister verbalize her day without any problems and he simply couldn't find the words. Makes me tear up thinking about it. As far as stomach pain- that is a common complaint. I have taken him to an allergist, gastroenterologist, neurologist (3),pediatrican, developmental pediatrician (2), and DAN ( Defeat Autism Now)doctor, natural medicine doctor (2) and have discussed problems with his gut with all. All tests have come back negative for celiac disease. He does have an allergy to dairy , eggs and soy, which we watch. But no one has a real answer. Frustrating. Hoping for a night filled with sleep!! Fingers double crossed!!

Good times

I am happy to write that we have had an incredible few days. 3 birthday parties- 2 of which Robbie was invited to and went- and SUCCESS!! The first party was at a lake near us that we never go to. One reason we have not spent time their is- Robbie generally freaks out when we pull in the lot, secondly- it is a little further away. I explained to Robbie where we were going in hopes that would ease his anxiety, but like many times, I'm not sure he even heard me. We packed up the car and headed over to Beach 3. As soon as I pulled in to park Robbie started screaming "No." The party was for a friend of Lexi's, and I knew she'd be heartbroken if we couldn't go, and I was on my own. So I made the decision to get out of the car and start walking. Robbie screamed a few more times but followed me. The minute we got there, the birthday girl said hi to both kids and gave them buckets with goggles and water shooters. Awesome!! That was it- he went straight to the water and had a great time for the next 4 hours. Success number 2 was another birthday party. I was pretty sure Robbie would be fine because it was at a friends house we've been to multiple times. And- they have a pool. The tough part can be the amount of kids and people that come to their parties. I've had to take him home other times because he just couldn't tolerate it. Rob suggested we park in back of their house- so we could avoid the initial crowd and go in by the pool. (Water- a favorite) The kids were in the water immediately and even as the pool became crowded- Robbie was all smiles!! About 2 hours in he told me he wanted clothes and was hungry. Easily solved. At cake time he did stay with the group for happy birthday but as soon ass the song ended looked out of sorts. I asked if he wanted to go back outside- as we were in a tight space with a lot of people. He said yes- I want to jump, and out we went. Success number 3 happened at our local lake- beach 1. Robbie was actually playing with another little boy. I have to give extra credit to this boy and of course Lexi who helped with the communication. Usually kids will come up to Robbie, try to start a conversation, get frustrated by the lack of response, and walk away. You can't blame them- but it hurts to watch. This boy- who is a little older, it turns out has Asperger's. According to his father he is different than most, he is very social. He looks for kids to play with and many times the kids his age don't want to play with him. Also painful to hear. Watching Robbie and this boy interact, talk, swim, and just be kids almost brought me to tears. It reinforces what I have thought all along, Robbie does want social interaction with other kids. He just struggles with how. Things I have learned about my son in the last 2 weeks most of which he has told me. 1) His prefers Blue over Green. I always thought green was his favorite color and would tell people if they asked- usually in front of him. 2) He thinks the new game I downloaded for him ,and his sister, is stupid. 3) He does not like to wear pull ups at night. This I totally understand but because he can't seem to fall asleep without melatonin- we have no choice at this point- unless I want to change sheets every night, at least once. 4) If you listen to him, he will tell you when he needs to spin, jump, needs water( swim, shower, etc.) 5) He is becoming very independent because he wants to be. Pouring his own drinks, wiping in the bathroom ( yeah!!) helping his sister with her seatbelt. While things can are still challenging, the more we understand our little puzzle (Robbie) the better things are becoming. I am so proud of the work he has done and continues to do. It's nice to post about situations that make me happy :)