Shut up! Oh no I didn't........

Yes I did. I said those two words to my autistic eight year old son. The same son whom I tell daily how much I love to hear him talk. In my defense it was 5am. I had been listening to him script movies, mutter to himself, tell me he's sad, tell me he's happy, ask for a kiss , since 1am when he woke up. This is the cycle we go through. He sleeps well for a few weeks and then- very very little sleep for a few weeks. What pushed me over the edge last night was not just shear exhaustion but that he had gone into his sister's room at 4:30am, specifically to wake her up. He knows better. He knows it is still night time and everyone else wants/ needs to sleep. He knows I will stay with him while he struggles through whatever is going on in his mind. Yet he woke up the first grader on a school night. At 5am she began complaining of stomach pains. We have had the stomach bug once already and I was  dreading the thought of her hunched over the toilet as she had been last time. Sick kids are the worst- since there is so little you can do to ease their discomfort. At 5am Robbie began running down the hallway yelling some movie line. He had already woken Dad, who leaves for work by 6:30am so sleep is precious as well. Now I thought- he'll wake Timmy too and it will all be over.  3 exhausted kids are much worse than 1 or even 2. So it came out of my mouth- "Robbie- please just shut up."  Horrible and ineffective. He laid in bed with Dad while I got Lexi in the tub- still feeling sick.
Truth be told I had a feeling it would be a rough night when I picked him up from School. He has his first session of "Games Club"- which is a social skills class at school. At first he was so happy to see us. He tried to introduce Lexi to another regular ed little girl in the club. I was told he did well. Yet he was stimmier (if that is even a word) than usual. He was muttering to himself and extremely jittery on the ride home. I don't think he was unhappy- actually he seemed very happy yet overstimulated at the same time. It was a Monday. Mondays are tough to begin with and the games club added an extra hour to his day.
Again- this a cycle. And with it comes great reward. Tuesday night Robbie asked me to play a game with him. He has NEVER asked to play a game. We usually beg him. Last night he played the same game with his ABA therapist and sister. His speech and communication has also increased. Yesterday he told me about his day at school. He played mindcraft and made chickens with one of the aides at school. (I'm sure it was during free time.) Again- he has never told me about his day with being prompted, multiple times. He is taking a second session of a regular art class. We drive by the art studio everyday while taking Lexi to school and he has said- "I love that place." His aba instructor picked him up and took him to the class this week. A friend of mine whose daughter is in the class drove him home. Seems like small potatoes to most but all this things are huge to us!
As I drink my 2nd cup of what will likely be 10 cups of coffee today- as last night was another rough night I am reminded of just how far we've come. Last night I was able to manage my own behavior and from 1am until 4:30am told him I loved him. Gave a few hugs and asked him politely to quiet down so everyone else could sleep, while he played on his ipad or watched a movie. Never again do I want to lose my patience and ask him to stop talking, just to keep it down from midnight to 5am.............. Love you Robbie.

Amazing Robbie and.... Astonishing Alexis

As I write all these blog posts about Amazing Robbie it makes me think about the movie Gone Girl. ( I don't want to give away the story to those who haven't seen the movie or read the book and to my husband- don't get nervous about where this post is going.) The parents of "Amazing Amy" the main character in the movie write a series of childrens books based on her. She was their only child and they obviously - really screwed her up.  I don't worry - as much- about screwing Robbie up as I do my other neurotypical children. Robbie is amazing. He has already over come tremendous odds. Today he pulled out a series of pictures he had cut out in school. He laid them out on the table. He told me a story about the pictures. The story was clear, concise and he demanded my full attention. I laughed reciting the event with Rob tonight. As a (part time) working mother of three, no one ever really gets my full attention. Robbie made sure to get full eye contact. I paused and he told me the story. The story itself has meaning as well. It was about a mother bird who had three baby birds. They hatched. She fed them "wormins" ( that's what worms are called on the backyardigans- so that has stuck.) Individually they flew out of the nest- each doing it differently. The last image is of the mother drinking lemonade- and "relaxing" as Robbie told me. Of course by the end of this 2 minute tale this momma was almost in tears. Never could I have imagined sitting with my oldest son and having this type of interaction. He also told me how much he loves school- especially getting these stories to bring home- and that his teacher has a giant boyfriend.- ( Miss Kim- if you read this- it was hysterical.) Amazing Robbie.
This brings to my other children - especially my little girl who often gets over looked. She is stuck between a special needs older brother and a toddler- who obviously needs more supervision than she does at this point. She is amazing as well. I think my expectations for her are higher however. I think I may get frustrated more easily with her. I fear that one day she will read all these posts that talk so much about my love for Robbie and feel- less than amazing.  One of my (many) resolutions for the new year is to ensure I tell her how special she is. How smart she is. How funny she is. How amazing she is- not only for being such a great sister to her brothers but because of who she is. How much joy she gives me every day and how much I love her. Astonishing Alexis........ I hope I don't screw you up!!xxoo

A simple fact

Here is a simple fact- and one that resonates with most parents. I will like you if you are nice to my kids. If you show them kindness and treat them with respect. Sounds pretty simple. Most of the time it is pretty simple. Who would be unkind to a child?
I understand that autism can be a scary word. It is different. Some may not know how to react to a child that is different- especially one who may not respond to them at all. Some days Robbie is completely engaged and will acknowledge others and have clear concise communication- like right now as he is explaining what's going on in the movie Astro Boy- and I am obviously not paying attention. He is giving me the play by the play- to ensure I don't miss out on his joy. ( He loves this movie.) Other days Robbie is - for lack of a better term "stuck in his own head." He will not make eye contact and if you try to engage him , he will seem to ignore you. That can be frustrating. And I understand why some would give up.
I ask- please - continue to try and engage him. Try and talk to him. Try and treat him like you would treat every other 8 year old boy. I promise that the times he lets you in- are well worth the effort. And not just because he's my little boy. His perspective is unique. His innocence is refreshing. He has a wonderful sense of humor. He wants to play. He wants to be heard. Many times it just takes a little more effort, on everyone's part..