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. 

What's his thing?

I don't know about the rest of the autism parents out there, but whenever I'm in public and my son's diagnosis comes up I'm frequently asked some version of the "what is his thing" question. Um...his thing? Oh, you know, does he count cards, know what day of the week any date was, play Mozart by ear? His special skill?

It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.

I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it. 

Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now. 

At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:

A's parents: Is that your son out there in the green shirt?

Me: Yes, that's Bambam.

A's parents: How old is he?

Me: He's 7.

A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?

Me: Oh, no. He's autistic. And yes, he is big. And athletic.

A's parents: Is that his special skill, athletics?

And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it. 

I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.

Hugs and Loves

For years, Bambam has greeted me first thing in the morning by asking for a hug. I'm not sure when this started, it must have been somewhere around 3 years of age when he began using words. Every morning He comes downstairs with arms stretched out saying "hug". Bambam is a sensory seeker. Deep pressure calms him. I think this is his way of grounding himself before the onslaught of the day starts. And of course I comply. Because what mom doesn't want to start the day with a big squeeze. It is awesome.

For the past 4 years, everytime I get my morning squeeze, I say "I love you". And for years it was answered by complete silence. And then, as words came for him, he would respond with "I like you". But he never said the word love. I often wondered why. I'm sure he could pronounce it, he says much harder words. My (probably flawed) reasoning is because he didn't understand the abstract meaning and how to apply it. The word like is used much more frequently in our everyday language. I like toys, I like playing, I like brother, etc. But love is not used as often. So it is harder for him to learn how to use it.

And then one day a couple of weeks ago when I said "I love you" during our morning squeeze, he looked at me and said, "I love planes". Progress! I was so excited as I also recognized that every autism parent needs to have thick skin and not be offended easily. I mean really, who wants to hear "I love planes" in response to telling them "I love you"? Well, I do as it means progress. He does love planes, he was learning how to use the word love.

This morning during our morning squeeze, I must have been a little distracted as my "I love you" was delayed. And I was rewarded by my little man saying "I love you". And I cried.

My 7 year old son said "I love you" for the first time ever today. 

Best. Day. Ever.

A Piece of My Heart

As a mother, I do not have a favorite. I love all my kids. But I am willing to admit that I love them all differently. They are each individuals, different and unique. What I give them, what they need from me, and what they give in return are completely different for each one. This may be due to the fact that we are a unique family. We are not the typical intact family with 2 or 3 typical kids raised from birth. We are a blended family. And a special needs family. All of these things play a role in my relationship with each of my kids.

Miracle Boy and I have a special bond. A bond different than that of the other 2 kids. Not better, or stronger, just different. He and I were alone for 7 years. Yes, Mr. Fixit and I started dating when he was 3, but we didn't reside in the same household until he was 7. During those 7 years, Miracle Boy was my right hand guy. We did everything together. When I went running, he rode his bike along side me. When I painted a room, he "helped" paint; then played with his toys and kept me company. He went grocery shopping with me, learned to mow a yard at a young age, helped decide where we would go on vacation, accompanied me when I went car shopping or looked for a house to buy. His opinion was always considered (although not always deemed correct). Right or wrong, we were in this thing called life together.

And so, when I went with Miracle Boy to get him settled in college, I went with a heavy heart. That child (young adult, but always a child to me) is a part of me. A very special, very huge part. He is my first bird to leave the nest. Watching him fly is both breath taking and heart breaking at the same time. 

I left a piece of my heart in Arizona.

Pickles, Pears, and Pretzels

Bambam struggles with language. For him it is not intuitive, it simply does not come naturally. He had no real words until age 3, sentences until age 5. He works so hard for the words and conversation he does have, but sometimes it just doesn't come out quite right. The other day I bought pretzel snacks in the shapes of the Disney "Planes" characters. Major score as airplanes are one of Bambam's obsessions. On the drive home from the fun house yesterday, this conversation took place:

Bambam: I want pickles.
Me: Pickels? I don't have pickles.
Bambam: I want pears.
Me: OK, here are your pears.
Bambam: I don't want pears.
Me: OK.
Bambam: I want pickles.
Me: I don't have pickles, I have pears.
Bambam: I DON'T WANT PEARS! (pause) I want...I want the "Dusty" snacks.
(Dusty is the lead character in the Disney "Planes" movie)
Me: Great job finding a way to tell me what you want! Do you remember what they are called? They are not pickles, they are ...
Bambam: (long pause) Pretzels!

Its a very fine line between helping him slow down and find the right word and watching him become a frustrated puddle of little boy. Sometimes we fall on the good side of that line. Yesterday was a good day.
 

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.