To Play or Not To Play

This morning as I was cleaning up the kitchen, I heard The Boy from the other room. Spider-Man and The Hulk were saving the day. Careening through the living room to save someone. I stopped what I was doing and I listened as he played. And I wanted to stop time. I wanted to freeze the moment and forever etch it into my memory. A moment in time to cherish. 

You see, this was the boy who had no words until he was well over 3. The child who had no imaginative play at 6 years old. None. He simply did not know how to play. We spent hours, months even, trying to show him how to play. 

Everyday after school we would take Mr. Potato Head and show The Boy how to build him. And then how to play with him. "Where would he go?" We would ask. And always the answer would be "da stowe". Because that's where we went, to the grocery store. The Boy had no imaginative play. Had no idea how to even begin. He only knew what we did, so Mr. Potato Head went to the store.

We painstakingly worked on it. Every day. We took Mr. Potato Head and the Mrs. and Jr. to the park and to the pool and to the library. All in our basement. 

And slowly, over months, The Boy began to play with Mr. Potato Head and his family. Always the same scripts that we had played out for him before. Word for word, we would hear Papa, or Mama, or Jr jump in the pool or swing on the swings or buy a pear at the store. But it was a start. An attempt at imaginative play. Something he knew and was familiar with.

So we expanded our repertoire. We played with Buzz Lightyear and Woody, Dusty and Leadbottom and Ripslinger. What would they do, we asked. And the scripts came from the movie. Nothing novel. So we offered ideas, came up with our own storylines for these beloved characters. And he watched, enraptured with what his buddies were doing. And then he would mimic. And we were so excited. Because mimicking was a new skill. We celebrate the small things. 

It took months. A year perhaps. But slowly, cautiously, he began to play. Novel story lines emerged. He expanded his characters to Paw Patrol, Jake and the Pirates, Doc McStuffins. All characters he knew from his shows. And then he began to play with stuffed animals and creates scenes outside in the yard. And when I stopped to watch or listen, I was amazed.  

This is a gift: A non-verbal little boy who, a few years later, is now playing in the living room with Spider-Man and The Hulk, creating scenarios where the hero save the day. I want to remember this forever.

A Little Bit of Patience and Kindness Please

In our town, we have a couple of thoroughfares that are heavily used. These 4 lane roads with 35 mph posted speeds (but everyone goes 40 or even 45) are in mostly commercial/business areas although there is some multi family housing in the area. As you can imagine, crossing the street as a pedestrian might be challenging at best, darn near impossible at worst. Until our city installed pedestrian crossings. These are a new addition, I think we have 5 or 6 of them now. They have greatly improved pedestrian safety. But not everyone is pleased with them as they slow the progress of the traffic. 

Yesterday as I was driving home from work, I was stopped at one of the pedestrian crossings with a car next to me also waiting. As I watched the person crossing the street, I recognized him as a Special Olympics participant. He has basketball practice at the same time as The Boy. He always says hi to The Boy and me when we see him. Clearly there is some Adult DD housing somewhere in the area as more often than not I recognize the people crossing the street as Special Olympics participants. 

This particular person, we'll call him Troy, has some ambulatory issues. So he moves a little slower than the average Joe. (Whoever wanted to be average anyway) As he was making his way in front of the car beside me, the driver honked and made gestures for Troy to hurry along. And my heart broke just a little. I tried to hide it as I smiled and waved at Troy, hoping he would think I was the one that honked. He smiled and waved back, yelling "Hi (The Boy's) mom". But I don't think he was fooled. Not for a minute. And my heart broke a little bit more. 

In that instance what I saw was my boy in 15 or 20 years. I see him doing his best to maneuver his way through this world that simply was not made for him. I see him taking care of himself, following the rules, happy with his life and in his world. I see him proudly walking back home from the nearby store with a snack paid for with his own earnings. And then I see some jack@$$ being impatient and unkind. Yelling at "the retard" to hurry up. Honestly, I go from a broken heart to my blood boiling in about 0.6 seconds. 

Sometime I want to yell from the rooftops "What is wrong with people?!?!" And I don't mean the ones with developmental disabilities. I mean all the people who are so impatient and unkind. The ones who think those extra 10 or 20 seconds affected their life. Really? What did it actually cost you to wait? Most likely nothing. But I can tell you what it cost the Troy's of the world when you treat them that way. 

It costs them their dignity. It costs them their self respect. It costs them their confidence. It costs them their ability to go out into this world which is just as much theirs as it is yours. It eventually costs them the ability to work, socialize, live even semi independently. Because if every time you venture out into the world you are treated like you don't belong, like you aren't good enough; well eventually you believe it. And then you quit trying. 

How hard is it to just be kind. Patience doesn't cost a thing. But it can sure make another person's life a whole lot more manageable, and dare I say, even better.

As Ellen says when she ends her show every day "Be kind to one another." Please.

The New Normal

The Boy has had a heck of a spring. And after the fall/winter we barely survived, this is sort of amazing. He's made so much progress in so many areas. He's reading. READING! And riding a bike. And writing his name. And sending "emails" home that he types telling us about his day at school. He's learning so many new skills. He's even been dry at night for the past 5 nights in a row. And that, my friends, is a true miracle.

That boy has never had a dry night in his life. We've spend a small fortune on night time Pull Ups. Not only have they been wet every single morning, but half the time he even pees through them and wets the bed. Laundry is a daily routine. It's hard to believe one small body can produce so much pee. 

We have tried everything. And I mean everything. No liquids after 7:00 pm. Then 6:00. Then severely limited them after 5:00 pm. We briefly discussed going to 4:00, but were afraid that might be considered child abuse. We made sure he emptied his bladder before bed. Then I started getting him up when I go to bed to empty his bladder one more time. I even got him up in the middle of the night to go yet again for a few nights. (that didn't last long, mama needs her sleep) Nothing helped. He ALWAYS got up soaking wet in the morning.

So imagine our surprise when 5 days ago he got up and was completely dry. The Pull Up was dry! We were shocked. And so excited. We made a big deal out of it and the The Boy actually seemed proud. This is an emotion he doesn't show very often, no matter how big his accomplishment. So clearly something was clicking here. We talked about it throughout the day and again when he went to bed. And in the morning he was dry again! 2 days in a row! 

Its now been 5 days and he's been dry every morning. As I texted my sister yesterday: Dare I say, could this possibly be our new normal? He even asked this morning about wearing "unnerwears in my bed". I'm not sure I'm ready for that step. Honestly, it frightens me a little. I know how much pee this kid generates and the thought of it flowing freely like a river ... I just don't want to go there. Yet. But clearly something has clicked with him. I don't believe 5 days in a row is a fluke. Especially 5 days in a row after 9 years of soaking wet every single night. 

I had started to wonder if night time enuresis was just a life time fact for us. I had honestly put this issue on the back burner, not giving it much thought anymore and just resigning myself to daily laundry and morning sponge baths. But once again, The Boy is teaching me that I should never count him out. And that its not up to me. When he's ready, he'll make his move; in his own time, in his own way. I just have to offer support and cheer from the sidelines. You go kid, you go!

Extraordinary

I read a quote on an autism facebook page the other day that I simply love. "When normal isn't normal it becomes extraordinary." It is so true. 

We've been working with The Boy on learning to ride a bike for 2 solid years. Even though he is very athletic and any sport with a ball is second nature to him, riding a bike had continued to evade him. At 9 years old he could not even pedal a bike with training wheels. Its not the balancing. You should see him on a scooter, he's a speed demon with amazing balance. And even on a bike with no training wheels he could push it along with his feet on the ground and then lift them up and coast for yards and yards. He has the balance. It's the motor planning required for pedaling that has been his nemesis. He simply could not get his legs to push down, pull up in alternating fashion.

With the change to the new school last September, The Boy was suddently included not only in PE with his GenEd class, but also Adaptive PE with his SpEd class. He has APE every day and twice a week they work on bike riding. Yay! With a variety of trikes and bikes of every configuration imaginable, they begain working with The Boy on the mechanics of pedaling a bike. 

Sometime during the fall, the APE teacher suggested we get The Boy a "Big Wheel" type trike big enough for him to ride at home. Apparently the angle of pedaling this is different and easier than a bike. So Santa brought him a Razer Rip-Rider 360. We chose this as we thought this was something that a "typical" 9 year old might like and wouldn't be fodder for teasing or stares. (And come to find out, his 11 year old cousin had requested and received the exact same trike for Christmas) We were pleasantly surprised to see him get right on it and pedal away on Christmas morning. 

After several months of watching him ride around on this trike like a mad man, we once again decided to reintroduce the "big boy bike". The Razer 360 is great for riding around our cul de sac, but doesn't really work well for family bike rides which was our ultimate goal. So over a long weekend at the fun house (which has multiple bike paths that lead every where he likes to go) I put on his helmet, grabbed the back of his bike seat and we took off for the river. He did awesome! By the end of that weekend he could ride for a couple of miles with me running along side of him providing minimal support. 

By the time Spring Break rolled around around, he was riding completely independently. We went for a 6 mile family bike ride. A few months ago I didn't know if this would ever happen. I loved every minute of it.  It was simply extraordinary.

"When normal isn't normal, it becomes extraordinary."

They Will Be OK

I worry. I'm a mom. Its what we do. And I'm really good at it. I worry all the time. About all my kids. Am I doing enough? Am I doing it the right way? Am I teaching them what they need to know? Helping them to reach their full potential? And the dreaded Am I yelling too much?

I try really hard to be a patient mom. Really I do. But I'm human. And I fail. All the time. I yell way more than I'd like to admit. At all my kids. But when I yell at The Boy, it somehow feels worse. Most of the time he is not acting out to be defiant. His mind and body work differently, and he often can't help what he's doing. I know that. But it can still be frustrating. And sometimes I loose it and yell. Not necessarily at him, but yelling just the same. Then I feel like a despicable human being wanting to crawl away and hide. I worry about the effect the yelling may have on him.

I'm sharing this because I'm hoping I'm not the only one out there who sometimes looses control and yells. And because I want to share that I think our kids are going to be OK in spite of us. The reason I think they are going to be OK is in part due to an interaction I had at the grocery store yesterday.

The Boy has been struggling with severe anxiety for a couple of weeks. And I mean SEVERE ANXIETY. If I leave the house without him, even if he's staying with Mr. Fixit, he cries the whole time I'm gone. It is not fun. We've all been feeling the pressure from his anxiety. So, yesterday I needed to go grocery shopping. I gave The Boy the choice of staying home and playing outside with daddy, or going with me. He insisted on going with me. Really. 

He was great during our shopping, a very good listener and helpful. While waiting in line at the cash register behind The Cat Lady (I'm not kidding, she had 2 carts FULL of cat food both dry and canned, but I digress) he saw some big stuffed animals about 20 feet away. He wanted to go see them but I had to stay in line waiting our turn. I told him he could go look at them by himself, look with his eyes only not his hands, no touching. He looked over at them, looked at me, looked at them again and then with a pained expression he said "Not today, maybe tomorrow". With his anxiety on high alert, it was just too much for him to walk over there by himself. I encouraged him again, but didn't push it. 

He eventually ventured to the front of the line where The Cat Lady was bagging her groceries and had a conversation with her. I have no idea what they talked about, I couldn't hear from where I was standing. I've taken the stance that if everyone looks happy and it doesn't appear that he is bothering the other person, I let them figure things out on their own. People generally respond positively to The Boy, so I didn't really think much of it. I paid for my groceries and moved to the front to bag my groceries.

The Cat Lady stopped me with a touch to my arm. She very sweetly said "I want to commend you on how you interact with your son with love and respect." I was a taken aback, and momentarily at a loss for words. I mean, we haven't exactly been having a rosy time lately and I've lost my patience more than once in the last few weeks. I stumbled over a few words and said something about trying, but not always succeeding. Her response was "Well, you must succeed more often then you realize because your son also responds to you with love and respect. He learned that somewhere." And then she smiled, winked and moved on. 

It was exactly what I needed to hear. It may be exactly what you need to hear too. In spite of our humanness, our short comings, our failures, I believe our kids will be OK. 

Never Too Late

The Boy is reading.

READING

A BOOK

My boy is READING A BOOK!


WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.

A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.

With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.

And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.

I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are. 

A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.

That kid inspires me. It is never too late.  

An Open Letter to Our Amazing Neighborhood School

To our amazing neighborhood school family:

After much discussion and deliberation, we have made the very difficult decision to move Bambam to another school with a dedicated special education classroom. As most of you know, Bambam has varied and complicated special needs. We have high hopes that his many needs will be sucsessfully met in his new school. But that didn't make this decision an easy one.

This decision was difficult for many reasons; not the least of which was the thought of leaving this amazing school. You have been his school family for 3 years. During that time he has been accepted, included, respected, and loved by teachers, administrators, support staff, students and parents alike. I cannot imagine a more positive, inclusive environment in any school anywhere.

The student population has been wonderful. Bambam has not been simply tolerated; after all, who really has a goal of being tolerated? He was accepted. His classmates included him when they could, helped him when he needed it, celebrated his accomplishments, watched out for him, and most importantly became his friends. Bambam talks about each and every one of them all the time. 

Some students have been in class with Bambam for 3 years, some for 2, some for 1. Some just passed him in the hallway or saw him in the cafeteria or on the playground. It didn't seem to matter. It appears they all know who he is. When we are in town or at the pool inevitably a child will come up and talk to Bambam. I sometimes do not know or recognize them. But they quickly tell me they go to school with him. Kids from kindergarten to 5th grade, they all seem genuinely happy to see him. The world could learn a few things from our little neighborhood school.

And so it is with a heavy heart that we are now closing this chapter and starting a new one. Please know that we could never thank you enough for all each of you have done for Bambam. I only hope that you too have gained something from the experience of knowing our sweet boy. 

And, instead of saying goodbye, we will say that we hope to see you around town.

The Kindness of a Stranger

To the Lady on "M" Street:

I drove by your street again today. And just like every other time I drive by there, I thought about you. It's been almost 3 years since that day. A day that stays with me. 

We were on the way to the hospital for yet another abdominal x-ray when it happened. The Boy got a bloody nose. At all of 5 years old, with numerous special needs and very little verbal skills; bloody noses freak him out. Completely. Freak. Him. Out.

I had to pull over, and chance would have it that I stopped in front of your house. We got out of the car, The Boy screaming bloody murder for all the world to hear. He's running up and down the street. I'm trying to grab him, hold him. He's hitting and kicking trying to get away. He's splitting blood everywhere. I'm covered in it, he's covered in it, its getting all over the sidewalk. I have no idea what it looked like to a passer by, but I'm sure it was a sight to make anyone pause.

I didn't even notice when you came out of your house. I have no idea how long you watched us. I was a little preoccupied.  I didn't notice you until you gently touched my shoulder. You quietly asked if there was anything you could do to help. Was there someone you could call for me. Nearly in tears myself and using all my energy to try and calm my child, I could only shake my head. And I thought you left.

But you returned just a few minutes later with a couple of damp towels. You quietly handed them to me and stepped back. The Boy had finally stopped kicking and hitting.  He was sitting on my lap, still crying, still spitting blood; but he let me place a damp towel on his face. A while later when the bleeding had stopped, you were back with 2 glasses of cold water. And still, you said nothing, asked nothing. You simply did what you could to help, quietly, unassuming.

I have no idea what you thought. I sometimes wonder. Here is this kid who looks like he's 7 or 8 years old in a complete meltdown panic, fighting the women he's with, blood going everywhere. I'm surprised you didn't call the police. But I'm thankful you didn't.

We spoke very few words. When The Boy was calm enough I put him back in the car. I turned and looked at you embarrassed, exhausted, holding bloody towels. You smiled and said keep them, you may need them on your way home. And you slowly turned with the empty glasses in your hands and returned to your house. I think I mumbled thank you before I turned to get in my car. 

Later at home I washed your towels with the intent of returning them to you. But I couldn't get the bloody, grimy stains out even with repeated washings and bleach. So I gave up. I never went back to your house. I never truly thanked you for your kindness. That part sits heavy on my heart. You have no idea how much your kindness meant to me. You never asked any questions, you never passed any judgment, you simply tried to help. And that spoke volumes to me. The world could learn a few lessons from you, me included.

And please know this, every time I drive by your street I whisper thank you. 
 

Patience and Understanding

I've waited a week to write about this. My emotions are still raw. I'm trying so hard to practice the patience and understanding I want others to give Bambam, but honestly I'm struggling with it.

About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.

So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.  

The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.

I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.

She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.

Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.

Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids  that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.

So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.

Sing a Little Song

Bambam has started singing. This is a new skill for him. It started within the past year with the Happy Birthday song. Which makes total sense because birthdays are one of his most favorite things. Doesn't matter whose it is, he just loves candles and cake and presents...and now singing Happy Birthday. Which he sings to someone (be it alive or stuffed, human or animal) at least once a day. It is awesome.

Within the past couple of months, his song repertoire has been expanding. He first added Old MacDonald and Baba Black sheep (yes, its a clear animal theme). But most recently he's added Frosty the Snowman and Santa Clause is Coming to Town. His versions are not exact replicas of the original, but they are certainly close enough for anyone to understand what he is singing. Seriously love it!

The only little issue with all this singing is that he wants me to sing with him. I. Can. Not. Sing. As in, I sound like a sick cow. Lets just say that my talents lie elsewhere. Don't get me wrong, I love to sing. When in the car alone I sing at the top of my lungs along with the radio. And I have a great time doing it. But any singing in public ended for me in Junior High School. (I know I'm dating myself, they call it middle school now.) I remember it clearly. The first time we were required to "try out" for choir. I didn't make it. Yes, lots of teenage girl drama followed. But eventually I came to grips with the fact that my singing was limited to in the shower or in the car alone. 

And then along came Bambam. My boy who had no words until he was over 3. Who works so hard on any and all verbal communication. Who I thought would never sing a single song. (Yes, I've learned my lesson about the word "never". Over and over and over again.) And when that sweet, angelic face looks at me and says "wanna sing too?" Well, there is nothing else to do but sing right along with him. No matter where we are. 

So, if you are in the grocery store, or at the park, or just walking down the street and you hear something that sounds a little like a dieing cow trying to sing Frosty the Snowman, well, that's probably me. Just one blessed mama enjoying a festive song with her beautiful boy. 

Curriculum Night

I went to Bambam's curriculum night last night. It is the last curriculum night I will ever attend. 

Although on the severe end of the autism spectrum, Bambam attends our local neighborhood grade school where he is assigned to a typical 2nd grade classroom. It is his home room, where he starts and ends the day (when he's having a good day). It is where he attends (most) of the specials, ie: PE, music, art, library (again when he's having a good day). I applaud his school for their dedication to inclusion, we are so grateful for the community of acceptance they have created.

But in all honesty, Bambam spends at least 75% of his day with one of his aides in the learning resource center getting specialized instruction. Because while the other kids in his class are reading in groups, writing in their journals, or doing math worksheets; my son is learning to count to 20, the sounds of the letters, and how to write his name. That is, when they can get him to sit and focus for at least 5 minutes at a time.

Most days I'm good with this. Fact is, we've long since been down the 5 stages of grief road and have firmly landed on acceptance. We've accepted that Bambam is on his own time schedule, he will learn at his own pace. And he does continue to learn and we celebrate each and every one of his small victories. 

But, that doesn't mean that there are no longer times when I have a small pity party. And as I sat in that curriculum night listening to his classroom teacher talk about the children leaning to borrow and carry over in their math skills and showed parents their writing journals, I was sitting there hoping that Bambam was having a productive pooping time for daddy so he could wear underwear to school the next day. And it hit me smack in the face yet again. Just how far the gap is between him and his typically developing peers. And it sucks. Sometimes it just sucks. 

I cried all the way home. I was a mess the rest of the evening. I was grieving all over again. And really, I don't need that. It doesn't help anyone, least of all Bambam. And isn't that who this is all about? 

So I decided I will not attend any more curriculum nights. And if a teacher or other parent thinks I'm "that" parent that doesn't show up or isn't involved, they will simply be wrong. What I am is "that" parent who will focus on what is right for her child.