Autism Reversed...........................nope

I had coffee this morning with a coworker and friend from many lifetimes ago. The pre marriage and pre children era. While we were catching up on each lives- kids, marriage, divorce, many career moves- she mentioned a friend who had a child at the same time she did. This friend's son had a diagnosis of autism spectrum disorder. However this friend through early intervention had reversed the diagnosis.
I felt my body tense. My teeth clenched. I bit my tongue for a minute. I had just mentioned that Robbie was doing well a few minutes prior. I took a breathe. She didn't realize the effect that statement had on me. I explained my position.
There is no evidence that Autism can be reversed. There is no evidence that Autism can be cured.  I believe that some children can learn how to handle situations and their own internal struggles to manage symptoms. I believe that many of those put into the umbrella of Autism Spectrum disorder may not have Autism. I believe many may have other issues such as food allergies or sensory issues. However many on the Autism Spectrum have food allergies/ sensitivities and sensory issues so it can be a difficult thing to define. I don't think we'll ever truly know what causes Autism. It is a puzzle with many pieces as the logo shows.
And yes,  Robbie is doing really well- for Robbie. As his teacher said during our conference today when I asked- as I do at every conference- "How does Robbie stack up academically compared to his neuro-typical peers?" Her response " He is exactly where Robbie should be. He has made a lot of progress over the last 3 years." Academically he is somewhere around a first grade level. Still, he has Autism spectrum disorder. He struggles with stimming behaviors and focus. Yet he is advancing and improving. He is learning some self regulation behaviors. He is becoming more social. He is participating in games club- playing Uno with 2 fourth grade girls. ( He loves the girls.) He has a buddy named Danny that he plays Minecraft with at the end of every day. He loves school and his routine. He is happy. He is loving. He is Robbie. He is my son and I am proud of him!

I've got you...............

Anxiety is a huge hurtle for many of those on the spectrum. Robbie is definitely no exception. We have tried many anti anxiety medications- none of which seem to help. Late last night after being woken again to "Mommy I'm scared" and responding with a big hug and the reassurance that I am there and I've got him, I began to write this blog in my head- as I do many late nights.  The new medication we have been giving Robbie- he won't take. We have tried liquid- mixing with apple sauce and even ice cream. He seems to notice it- and then pushes it away. We've tried tablet form- crushing it into juice with his other medication. He will not drink it. He points to the medications bottle and says- "No that one."- even when he doesn't see me put it in his apple juice. Amazing sense of taste.
As I contemplate the phone conversation I will have with his pediatric neurological nurse practioner, I open my emails. There it is, the Autism blog that I read religiously. The topic is anxiety. It explains through the voice of someone on the spectrum how much anxiety they feel every single day, from the moment they wake in the morning, even in their own homes. It also talks about the tools they have developed to handle the anxiety- each one unique.  Perspective.
"Hugga Me." "Take a deep breathe" These phrases I hear at least 30 times a day- or more. It can become cumbersome. When you are cooking dinner, changing a diaper or helping a 6 year with her homework (which by the way can be really confusing these days). Stopping to give a hug, make eye contact and take a deep breathe seems like a lot. Especially if it's the 25th time in the last 15 minutes. Robbie's therapist thinks it has become an OCD behavior just as much as a coping mechanism. But it is a strategy he has developed- with our help. At times he will also tell me he needs a squeeze. On the flip side sometimes he will tell me he does not want to be touched or does not want to talk. Progress!
Nighttime has always been a challenge in our home. Robbie will not sleep by himself. The routine goes- someone lays with him until he falls asleep. Then we leave to go to our own bed. A few hour later he will come find one of us- usually me. Many nights he'll say "Mommy I'm scared." My reply is and will always be the same  " I'm right here Robbie. I've got you."

Expectations

This post is two fold- Do I need to adjust certain expectations for Robbie? Do Others need to adjust certain expectations for Robbie?
Others first- Yesterday I went to pick Robbie up from after school games club. This is a social skills club where regular education children and special needs children play board games. The goal is to teach good sportsmanship, turn taking, social interaction and acceptance of those with differences. Those are the goals in my mind. The club has only met a few times due to snow and holidays. The person leading the group is Robbie's school social worker. She hasn't had a ton of direct contact with Robbie but has managed his case for the 3 years he has been at his current school. The first week she told me how great he did- although she had to encourage him to pop the dice for the game of trouble. ( encourage meaning hold her hand over his.) He did try to introduce his sister to a little girl in the club when we picked him up. To me- that was great. Yesterday she was excited because "Robbie did such a great job! He popped the dice all on his own." Hmmm. Really? I can see the progression but we also have the same game at home and on occasion he will play with Lexi and I. When we got home I read his daily report from school. Robbie had been very moody, difficult and was giving his teacher the silent treatment. She asked if we had experienced the same thing. Another subject entirely- but yes we have experienced the same thing on and off for a few weeks. He has seemed very overwhelmed at times and will change his mind during the same sentence. " Can I have applesauce, no I don't want applesauce, yes I'll eat applesauce, no I'm not hungry, please give me applesauce."  Yes- that is for real. It happens many times during the day. Sometimes he just stops talking. He does this on purpose and will ensure he has full attention and eye contact while pointing out what he wants. Kind of brilliant if you ask me. He's struggling- so this makes it easier. - I digress. Expectations. Are the expectations Robbie's social worker has for games club that he will pop the dice in a game and that is success? I hope not. That is not my expectation. Next up- email to social worker discussing expectations and goals.
My expectations- I've mentioned in many blogs that Robbie doesn't understand catch phrases or slang terms. This morning I asked Robbie to get dressed and made a comment "whatever works man." His response was "I am not a man, I am a boy." My reply " Robbie you are right, you are a boy. It's just an expression. "   Robbie " I am not an expression!!!!! I am a boy. I am Robbie!!" I put my hand on his head to calm him down and said " you are sensitive today."  He replied- " I am not hot- I am better."  He thought I was checking his temperature.  I thought about the interaction that had just taken place. I asked Lexi if she understood what a catch phrase was. For example " see you later alligator." She said  "you mean from a movie?" I explained that I am not really calling her an alligator- which I think she understood but the concept of a catch phrase may be a bit over her head. So- when do children pick up catch phrases , satire, sarcasm and really understand what they mean? I think I have to adjust my expectations. Maybe one day Robbie will truly understand, and then again, maybe not. Either way , it's ok. :)

Parenthood- the TV show- after 6 seasons I will miss you!

Parenthood- for 6 years I have watched every episode. Cried almost every week and yet smiled through it all. This show has meant so much to me over the last 6 years. Robbie is turning 9 in March. He was diagnosed at 3. I watched as Max Braverman- a character on the show- was diagnosed with Asperger's syndrome. I cried with the family- relating to the horrible sense of loss that accompanies a new diagnosis- of any kind. I watched the final episode where he graduated from High school- a charter school his mother had founded especially for kids like him. As the years went on I sometimes felt a bit detached to  Max's character as Asperger's- while considered part of the spectrum of autism- is different than Robbie's diagnosis of moderate Autism. And even more- different than Robbie. Max does not like to be touched and almost never makes eye contact. While Robbie's eye contact comes and goes with people he does not know well, he makes fairly consistent eye contact at home. Robbie also likes to be touched- hugged and kissed. (Particularly big squeezes ) The interaction with Max and his siblings- or lack of interaction is also different. People often ask me how Robbie is with his siblings. I answer, but always find that to be an odd question- until I remember they don't know Robbie. He loves his siblings. He is excited to see Lexi after school and plays really well with her. She is his one true friend. He is also good with Timmy- most of the time, just as any other child would be with a toddler sibling. ( Timmy takes his toys, legos, food, juice, etc, etc, etc. I would be frustrated by that. ) There are similarities as well. The social awkwardness, being content to stay home, lack of interest in organized team sports, being very focused on one thing at a time. The inability to understand common phrases or slang. " See you later alligator " is followed by "I am not an alligator!!" usually yelled back in frustration by Robbie. These are also just similarities between Robbie and Max. I know other children on the spectrum who crave social interaction and enjoy team sports. Every child is different yet there are many strands of similarities. Again- its a spectrum.
As Autism rates sky rocket it is a bit amazing to me that there are not other shows which discuss the issues involved in life on the spectrum- or maybe I've missed them? At any rate- Parenthood and The Braverman family- I will miss you. Thank you for ending the season where you see some true joy on Max's face, as I sometimes see on Robbie's. Max hugs his baby sister, he plays baseball with his family, he takes pictures at a family wedding- a skill he is really good at.. Thank you for holding my hand through the last 6 years. Now who will be for the next 6? Any suggestions?

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..