Ebbs and flows.........

When someone hits you with the full intention of doing you bodily harm, it hurts. When it's someone you love not only does it hurt physically but emotionally in a place deep down inside. Imagine the person harming you was your child. Robbie has always been a kind soul. Sensitive and loving. As I may have mentioned in another post, the aggressive behavior has really thrown me for a loop. On one hand I understand the frustration he feels. I had a dream/ nightmare a few weeks ago. I was in a strange yet familiar country. I was trying to get home. I asked for help, but no one could understand me. They simply walked by. I ran in what seemed like circles yet could not find my way. I became scared. So scared that it woke me up. I felt for Robbie more deeply than ever at that moment in the middle off the night. Yet, when he becomes violent, I have a hard time feeling for him. At times the outbursts are as simple as " no you can't watch this movie upstairs because it's a blue ray. Our blue ray player is downstairs, you can watch it there. On the bigger TV." Hitting, kicking, scratching. I'm fairly sure he stopped listening after he heard no. Things have improved from changes in medication. The third SSRI ( selective serotonin retake inhibitor) or medication used to treat anxiety , we've tried seems to be helping. The meltdowns are less frequent but no less violent when they do occur. Lexi said " Robbie never hits me, so I can help." That is another conversation entirely. The meltdowns come quickly and I am never fully prepared. School reports have improved and behavior in school has evened out. At home we still are struggling to get a handle on how to manage the outbursts when they happen. This weekend I have done exactly what Robbie's new behaviorist has suggested. Completely ignore it. Much of it is for attention however this weekend it seemed to intensify as I ignored. Sorry to my neighbors because as I ignored the yelling and went to take out the trash Robbie followed me and screamed the entire time. I will also say it is hard to ignore someone who is hitting you. That being said I do agree it's hard to handle but I hate it when strangers say " I don't know how you do it." I will tell you how I do it, I am his mother. I will always love, protect and nurture him, even in the times I may not like him. Even in the times when I am having a tough time managing his behavior. Even when the frustration makes me cry and want to hit something myself. And yes , it is hard. It does make me feel for my own mother. I remember how angry and hateful I was as a teenager. Even now I don't really know why I behaved that way but I do know , I was awful to her. Now being on the other side I do want to say , thank you Mom. Thank you for always being there for me, even when I made it very difficult. That's what I am trying to do now. Just be here. Just be here, especially for the moments when Robbie , grabs my hand, looks me in the eyes and says " Mommy I love you." As he just did.

Great start to the week!!

" I love school." Says Robbie as we are on the swing set at 7:30am this morning. He has already had a bath, eaten breakfast and brushed his teeth. There has not been any whining,crying or aggressive outbursts. It was a great start to the week and lets face it, Monday's pretty much suck.
The weekend was busy with Halloween related activities and I really didn't think we'd get through it, but we did. The annual Halloween party at a friends went as well as could be expected. Rob took Robbie about 30 minutes before the party started, a coping ritual done every year. This allows Robbie to settle in before chaos begins. I arrive with Lexi and Timmy a few minutes  after the official start time to find Robbie quietly playing with some toys in the family room. Robbie spent most of the time stimming outside, where we were, and eating sugary cookies. He did not want to go on the gigantic slide that was rented from bounce U. I was a bit surprised at first because Robbie loves Pump it up/ bounce U but then remembered he has not gotten in any other bounce houses or slides outside of the facility itself in a few years. This makes sense to me as Robbie tends to compartmentalize many things. For example I have never heard my son read yet he reads in school. That is the explanation. Reading is done in school, not at home. In the same token, sliding on a large inflatable slide is done at bounce u or pump it up, not at a house party.
Robbie did not want to wear a costume, which has been pretty typical for him at Halloween. He'll pick one out and wear it before or after Halloween but most years not during the actual day or anything associated with it. I took Robbie home about 40 minutes before the end of the party as everyone makes there way to the parade in Medford. We have never even attempted the parade. Apparently it is amazing, but all we think about is the crowd and the noise and of course how that would affect Robbie. So we skip it.
Sunday we attended a safe trick or treat at my husbands school. We have gone for the last 3 years as Rob has worked a station with his basketball team to hand out candy. Robbie wavered between wanting to wear his costume and wanting to stay in his pajamas. He also yelled " I don't want candy" as I explained he would be able to get lots of candy. This is a statement I ignored. Robbie LOVES candy. He decided he did want to come. He did want to wear his costume. He did in fact want candy. I wrestled all 3 into the car as Timmy began to state he did not want candy.  Again, a statement I ignored as he too, loves candy. We pulled into the parking lot and Robbie started screaming that he did not want to go in. Again, this wavering back and forth happens often. Lexi and I both explained that we'd go in, see Daddy and come home. That finally seemed to work and I held him close to my side as we walked toward the door. We had to stop twice to breathe and give a deep hug. The next 2 hours were spent collecting candy, handing out candy and for Robbie, eating candy. Robbie ate an unbelievable amount of candy. That evening thing seemed very "normal" for our family. We ate dinner. The kids worked on a craft project. They watched a movie. Robbie ran back and forth a million times saying "eeeeeeeee." Robbie jumped up and down, flapped his hands and was loudly stimming. While I can't say the loud stimming noise was not a bit distracting, annoying even. I can say the lack of anger and aggression was awesome. Fingers crossed for a good week for all!!!!

Autism takes

This statement may sound a bit harsh, but Autism takes. In the beginning Autism takes away hopes and dreams. As time goes on and your child grows up and matures a bit, some hope returns. Shortly after, it is taken away again. Rinse, repeat, rinse, repeat , if you catch my drift. Just about the time I feel like I really have a handle on things, something comes crashing down. Just as Emily Perl Kingsley says, you're not going to Italy, which you had prepared for, you are going to Holland. Or even more perfectly stated by Rachel, a fellow special needs mom, in her blog " The Kevin Chronicles"  you're suddenly in the club that No One Wants To be a Member of Including the Members of This club, club.
Lately for me, it has been aggression. Robbie is so angry. Anything can set him off. It is affecting the whole family.  We've also experienced some regression. For example medicine- we had gotten to the point where Robbie would take cough medicine for a cough. Robbie would take headache medicine for a headache. Robbie would take his nightly medication with out argument. Now, it is all a battle that we are not winning.  Almost any outing or activity that was once enjoyable is now stressful. I picked Robbie up early from school so we could go to his book fair and buy books for himself and his siblings. Something we have done the past two years. Robbie was happy to see me yet as we entered the library he became agitated. He picked up a book and when I suggested we keep looking but hold on to it he began screaming at the top of his lungs. The next stop was to pick up brother at daycare. Again something we've done many times. As we pulled in the parking lot he again became agitated. I had a sinking feeling as it was still nap time inside for the little ones. I explained that we needed to pick up Timmy and he could either wait in the car which I've never offered but feared the screaming episode of the library or come quietly with me. He chose to come with me but started to become loud as soon as we touched the door. His volume increased as we entered the building.  Again, this is the time of day where most of the children are still napping and I creep in to pick Timmy up to ensure we get Lexi on time. The feeling of control is gone and that feeling of embarrassment is back. To be clear, the embarrassment is not from Robbie's autism but from your inability to have any control over your child, who once was somewhat under control. You knew when and why the meltdowns were to occur.  He is not a toddler. This is not a new diagnosis. After years of struggle and daily tears, this should get easier, or at least not harder.
And then come the questions. Is Robbie in a new school? No. Does Robbie have a new teacher? No Is Robbie in a new classroom? No. His child study team think it could be due to hormones and behaviors. Did you know those on the spectrum tend to go through puberty earlier than their neuro- typical peers? Neither did I, but apparently so, says his teachers.  So again, what do we do.
1) Tomorrow a new Behaviorist is coming to develop a program.
2) New medications begin as soon as we can get blood work done.
3) I know this is a bump in the road or the journey of autism and we will move forward, but it sucks.

Art class

I ran into Robbie's art teacher this weekend. Robbie had missed art last week due to his bus being very late which has him out of sorts. I apologized for his missing the class and not reaching out to her sooner. Next she began by saying she had wanted to talk to me. Immediately my heart sunk as I assumed it meant Robbie was being disruptive during class however that is not what she said. She asked if it was ok for her to discuss Robbie's autism diagnosis with other parents in the class. She explained that Robbie was fine in class, a bit of scripting dialogue and asking for hugs from her but no disruptions. I exhaled. Robbie could continue art class as he has been doing for the past 6 sessions.     Robbie really enjoys art. It's the only activity outside of school that has stuck.  I offered to draft a letter she could use to help explain Robbie/ autism and send out if she wished. After discussing this scenario with my husband, here is the letter we came up with. And yes, I cried through most of it. Feel free to offer feedback.

Dear Other Parents in Robbie’s Art class,
I wanted to introduce Robbie to you and your child as he does not have the ability to do so himself. Robbie was diagnosed with Autism Spectrum Disorder at the age of three.  People with autism have difficulty in areas of social interaction, communication and repetitive interests or behaviors.  While those with autism have many similarities, each is also unique in many ways.  Robbie likes hugs and touch.  Robbie is verbal but may be hard to understand as much of his speech is linked to movie references or TV shows.  Robbie also has a high level of anxiety due to his inability to communicate as others do.  I write this letter to you and your child in hopes of providing some understanding as to why he may hug his teacher repeatedly or flap his arms in the air. He loves art class and it has been a blessing to find a friendly environment where he can be Robbie and enjoy the class.
I’ve drafted this letter just in case your child has discussed a student in the class that was either a bit weird or who did not follow all the rules the teacher has put in place- (hugs, interruptions, etc.)
If you have any questions, please free to reach out to myself or my Husband. We’ve been living in Medford lakes for 11 years and have 2 other neuro-typical children- 7 year old Lexi and 2 year old Timmy, as well.
Thanks!
Simonne Hummel
simonneprescott@hotmail.com

I've always felt.........lucky

I've always felt lucky. Wonderful family, great friends and a pretty nice life. Even through the world of Autism, I've felt lucky. I'd hear stories from other Autism moms about taking all the furniture out of their children's bedrooms- in an effort to prevent self injury during a particularly difficult meltdown. Pad locking the food pantry and refridgerator because their children would constantly eat or drink.  Those who are completely non verbal or those who show no affection and dislike touch or hugs. Those who want play team sports and be included with their neuro-typical peers, only to have their feelings hurt.
Lucky.
I would hear " I don't know how you do it." And get annoyed. ( honestly I am still unhappy with that comment. We all have challenges.)
Yet, he we are. In a place I did not see coming. My very sweet, kind, loving, affectionate boy has become volatile. I knew that sometime around the teenage years, things would be difficult. Now I fear they could get worse. ( fingers crossed they don't) As I hear him giggle in the next room with Dad and his little brother I can almost forget the screaming, crying, yelling, grabbing, hitting, kicking- breaking objects- scene of the other night. But I can't. The volatile behavior has escalated all summer. The hitting has begun to take place in school, at teachers. It has escalated at home to Dad and Mom. Robbie is struggling. We are struggling.
Many friends have asked if something changed? What do I think the cause is? Like the Autism logo, a puzzle piece, I think there are many things that play a part in the internal struggle Robbie is dealing with.
1)Too much sugar and junk food. This is always a struggle in our house as he won't stop at 1 soda- he sneaks 3 or 4. He can't take a small bowel of Doritos , he'll eat the entire bag.
2) Timmy- who is a toddler and gets a lot of attention. Lexi- who is a 7 year old girl and speaks very quickly and very often.
3) Change in routine/ environment. While he is going to the same school, with the same teacher, we are told this year is more challenging. There are a few new students as some have moved on.
4) I think- Robbie is also struggling with his communication limitations. Life is fast and loud. While he may not be holding his ears, noise bothers him. At dinner time he struggles to keep up with conversation. Although we try to slow things down and keep the noise level to a minimum , it's hard to do. Robbie also hears and understands everything. He knows he has autism and that his siblings do not. He know he is different.
What do we do now? Rob created a social story about not hitting, kicking, etc.  We are moving things around in his room to give him a safer place to let out his frustrations. We are locking cabinets and limiting junk in the house. We are trying to slow down and be a bit more quiet. We are continuing to tell Robbie how much we love him and give him bear hugs. We are doing the best we can, just as Robbie is.
And 2 days later as I've let this post sit to reflect before posting, I've heard "I'm sorry Mom" more times than I can count and seemingly out of the blue.  My reply is " I know Robbie, and I'm sorry too."

Things have been uneventful and why.........................................

A very close family friend commented that things must be good because I had not blogged recently. It made me pause. While I said I've just been really busy, which is true. I was thinking about a few times I had tried only to be interrupted by a toddler demanding my full attention, or a work commitment, or exhaustion.  In truth, things have been relatively eventful.  However I do want
to thank all who came out to and supported  the Miles of Hope 5k walk /run in  April to benefit Autism Speaks. It was a fantastic day and over $7,000 was raised to support Autism awareness and research- obviously a cause very close to my heart.

One of the reasons things have been relatively uneventful are with time things do get easier for the following reasons-

1) Acceptance-  of the things Robbie can or will do and those either he can't or won't do. Knowing what situations may too difficult as a family.  Being able to talk about his strengths and challenges to friends and strangers without tearing up (usually) and hearing the support and interest of those who are unfamiliar. Blocking out any ignorance or unkind statement.

2) Trial  - and error- continue to try new things but always have an exit strategy. 2 parents, 2 cars, a friend willing to watch one of the other children should an exit are needed. While we have tried just about every sport- Robbie is beginning to show genuine interest in basketball and soccer. We'll try again.

3) Preparation - pictures, discussion of events with Robbie and/ or arriving early to check out a scenario before he joins. Talking to others about events to know what pitfalls may lie ahead. ( ex. Robbie's fear of horses, so removing him from a party before the pony rides began, yes I said pony rides, it was an amazing party!) 

4) Love- as always putting his needs at the top of the list , as they cannot always come first as 1 of 3 children. Yet we always think about how he may react to a situation and if it is worth the effort.

5) Experience -from us as parents and Robbie himself- knowing when he needs a deep squeeze, a light touch, an extra shower/ tub- for the pressure of the water, a quiet moment.  Luckily many times he can tell us and more times than not he will “hang in there" a bit longer if we are at an event or party.

6) Laughter- Not always easy- but sometimes you just have to laugh. When Robbie decided to lay down in the middle of the hallway at Lexis' school during the art show- I scooped him up- but I did laugh my way to the car. This is our reality. Sometimes it is just- comical.

I am so proud of how far he has come and the kind, thoughtful and funny person he is.
I know there are many bumps ahead, puberty.......( Yikes...) Teenage years.....( Oh noooo) however I am equally fearful of those events with my neuro typical daughter, possibly more so.  With hope, love, family and friends we will get through them, together. Hopefully with more laughter then tears !!!

Food and Rainbows!

One of Robbie's home therapist asked my advice. He is a one to one aid in school to a boy who is not eating his lunch. His mother has requested that he sit with the boy until he has eaten his gluten free peanut butter sandwich. I asked if he eats anything else. Apparently he does eat some of the other items in his lunch, but lately not the sandwich. He wasn't sure that sitting with the boy and forcing him to eat would be beneficial long term. A different situation had occurred for a classmate of Robbie's. His mother shared her frustration as her son would eat everything else in his lunchbox before eating his sandwich. She thought that was fine, however the in class aide would try to make him eat the sandwich first. It became an issue. This mother however wasn't sure why it became an issue. If he's eating his entire lunch why does it matter what order he eats it in?


I have been blessed with three children who eat. I say this because I do know some families where eating anything can be a challenge. This post is not to demean those situations in any way.
The first situation may be that the boy was tired of the gluten free peanut sandwich that was packed every day. Robbie used to eat left over macaroni and cheese or couscous from dinner the night before for lunch. He will no longer eat either one in school. It took me a few while to make the connection, but I started packing different things for lunch and problem solved. The second situation is slightly different. If the order in which a child eats his lunch does not concern the parents, than why does it matter? I never pack sandwiches because he doesn't like them. This may have helped us avoid situations regarding what is eaten first. Although I too do not care as long as he eats lunch.


Both situations had me thinking about Robbie's eating habits as of late. I'll be honest. I've been celebrating a bit. Robbie has been expanding his food choices. This may seem small because as I mentioned he has always been a good eater. He does not have issue with texture as many on the spectrum do. We are lucky. However he is very picky. Whether that is in part due to the Autism or a kid just being picky- who knows. He will now eat Taco's- or at least the shell- with chicken and ketchup. May sound gross to some but I think it's great. This past week he ate regular pasta with butter and parmesan cheese. For the last 4 years he has not eaten pasta unless it was macaroni and cheese out of the box. Preferably Annie's homegrown mac and cheese. Friday night we made pizza ourselves. Usually I order from the local pizza shop because he would never eat the pizza we made. Loves to make it- but would never eat it. Maybe I was lucky because it was a new crust I hadn't tried- which was really good. Robbie ate his entire pizza. (Lot's of peperoni and little bit of cheese.- the way he likes it.)
 Robbie has also decided he loves basketball.  Many mornings he asks to play and shows me how ne can dribble the ball. We recently found a rainbow colored basketball at 5below and I think in Robbie's mind he'd won the lottery. (He is a bit obsessed with rainbows. You'll see many in our home- out of legos, blocks, beads, crayons- whatever is available.) He has been playing after school with his therapists. Since his father is a basketball coach this really should not be shocking, yet it was. He's watched it for years and never shown much interest. It's like a light bulb went on. I am happy he has found something he loves, besides minecraft and movies.
I was explaining how excited I have been with these "new culinary experiences"  and his interest in basketball to my best friend.  She gets my dueling sarcasm and genuine joy out situations like these. For us it is constant small steps, or little pieces of the giant puzzle that is Autism and Robbie. Some days they seem to be a dark cloud over our heads and some days they are as beautiful as the giant rainbow on his wall. And that is the beauty of Robbie! We love you Robbie!