We recently received Bambam's first report card. To be fair, we did receive progress reports in preschool and kindergarten. But this was his first "real" report card from first grade. And WOW. Talk about depressing. The entire report card was filled with "n/a's". And I mean the entire thing, no other marks at all, just "n/a". Even though I know exactly where my child is developmentally, this still makes me take a step back, sit down, and breath deeply so I won't cry. I've said it before and I'll say it again: seeing in black and white exactly what my child cannot do is one of the worst things about being a special needs parent for me. I really don't need to be reminded, I live it every day.
This report card seems worthless to me. I'm not sure why the school even bothers to send it home, other than I'm sure it's required by some stupid administrative rule. And I'm sure his teacher likes filling it out about as much as I like receiving it. Who wants to focus on what a child cannot do?
Apparently not Bambam's teacher. Because in addition to the report card, the envelope held a letter written by her. The first sentence said: "Bambam has made steady progress since the beginning of the year." And then she listed items that he CAN do or where he has made significant progress. These are not things measured on the report card of a typical first grader. They included items such as
- Greeting peers by name and making appropriate eye contact
- Having short, appropriate give and take conversations with peers
- Reaching conclusions after hearing spoken information; expressing his conclusions
- Using a quiet voice when interacting with peers and adults
- Accepting of "now" and "later", will concentrate on work now for a reward later
- Able to spend up to 30 minutes in the classroom and remain calm with normal activity/noise level of peers
- Participating in PE and Art with his class
- Beginning to do academic activities in the classroom with an aid, or with a peer but no adult supervision (HUGE!)
There were 16 of these items. And she ended with "I am expecting great things from Bambam. He is doing wonderfully". I'm not ashamed to admit that as I read this letter, I did cry. I was crying not just for the improvements we've seen in the past 4 months (awesomeness!), but for the people that surround my son at school. People who "get him". Who celebrate his small accomplishments as much as I do. Who clearly love him for who he is, where he is, and what he has to offer. For this I am grateful everyday.
As for the report card, they can keep that. I'm keeping the letter.
The New Guy (Bambam's neurological psychiatrist) is big on language development. As he put it "language is the key that unlocks everything". He's encouraged us to supplement the speech and language therapy that Bambam receives at school with private SLP on a weekly basis. We're getting this set up. But, in the mean time, we've had some evidence of how powerful language can be for a child like Bambam. Two very recent examples come to mind.
Last weekend Bambam was sick. Just a 24 hour thing, but fever, vomiting, stomach ache, you get the idea. In the past when Bambam has been sick and vomiting, he's been a disaster. It always included yelling, screaming, crying, flailing about, spitting, and general meltdown mode. There was no comforting him, he would be a disaster until he fell asleep. But last weekend we had a different sick kid. This one could tell us "I doan feew good". And even warned us with "I frow up, I frow up!". Like any mom, I felt terrible that my child was sick. But, I was also thrilled with this little boy who could TELL ME that he was sick. Being able to verbalize how he was feeling was amazing, a first, a huge step forward in his development. And it seemed to give him a sense of control. He wasn't yelling or crying or screaming and there was no melting down. Just a sick little boy laying on the couch saying "I doan feew good".
Then, later this week when I went to pick up Bambam from school, they were having a fire drill. And wow is that alarm LOUD. I could hear it 2 blocks away inside my car with the radio on. And I cringed. Fire alarms have always been a source of meltdowns for Bambam. In fact, the school has excused him from all fire drills since the first one his kindergarten year that traumatized him. I'm not sure how this one occurred without me getting a call to pick him up early and I was a little upset about that. I figured I was going to have a very long afternoon with a child close to meltdown stage for the rest of the day. But, as I waited for him to return to the building with his aid, what I saw amazed me. Here came this little boy holding Mrs. "E's" hand with no tears, no yelling, no melting down. When he saw me he said "is too loud, it scares me". Um, WOW! The power of language. Just being able to say that it was too loud and scarey gave him the control he needed to be able to function in that situation.
New Guy is right, language is the key to unlocking everything.
We've add a a new doctor to the line up. He's a developmental psychiatrist specializing in autism and ADHD. Why didn't someone refer him to us years ago? (Actually I know why, he's new to our area.) I think I love this man. He's knowledgeable, practical, caring, and (as he put it) not very PC. I don't know about the rest of you, but I get so sick of all the PC crap. Sometimes my kid acts crazy, totally off his rocker, nuts... and I call it like I see it. So does the new doc. We're going to get along great.
So we started with the typical evaluation appointment. But, being the practical person he is, New Guy didn't even try to put Bambam through the standardized tests. After spending 15 minutes talking to him he realized testing would get him no where. Having 20+ years of experience under his belt, he had no issue giving a diagnosis based on observation, history, and completed diagnostic forms from us and the school. And, he took the diagnostic forms that we filled out in November so we didn't have to do it all over again. Bonus! The result: Autism, ADHD combined type, and Generalized Anxiety Disorder; all severe. But, he said he's be very careful about giving him a diagnosis of an intellectual disability at this point. As he said "its obvious that Bambam understands everything". He feels that his various symptoms and lagging expressive language are getting in the way of his "academic progress". So, intellectual diagnosis will wait.
The next step is refining Bambam's meds. New Guy is convinced we can do better. So we've made a change and we're seeing some amazing results. For the past week, Bambam has been able to spend much more time in his home classroom. He's working with peers without the need of an adult aide, he's using an appropriate "inside" voice, he's not getting overwhelmed in the lunch room or PE or music or at recess. He's having conversations with his peers, appropriate give and take, on topic! Granted, it needs to be a topic he's interested in, but still, this is huge improvement.
I'm excited about the changes we're seeing and I'm hopeful for a working relationship with a knowledgable doctor. I have high hopes for The New Guy.
The local radio station is running a contest. They are asking readers to send in their love stories. The top stories will be posted on line and voted on by the general listening public. The winner receives a dinner for two and a gift certificate to a local jewelry store. I'm really not interested in the prize, but I've been very tempted to enter our story.
You see, our love story is not full of roses and candy and date nights. In fact, I don't remember the last time I received flowers from my husband. But ours is a love story none the less. It goes something like this:
I met my husband almost 15 years ago through mutual friends. We were both divorced and single parents of preschool aged boys. After 6 years together, we married almost 9 years ago. 6 years is a long time to wait, we were both a bit gun shy. And we knew that blending families is hard which is why the divorce statistics for 2nd marriages increases from 50% to 60%. But we were committed and it was working even with some bumps along the way.
Then 7 years ago, we received unexpected news. We were having another child. This was not planned. Our boys were almost 10 years old. We had other plans. They would be off to college in 8 years, we could do something different. We had been planning to semi-retire, move, see the world, etc. Now, we needed to adjust all that and get ready to welcome a new bundle of joy.
I won't lie, tears were shed. But once the shock wore off and all the "advanced maternal age" tests came back "normal", we settled into welcoming our bonus. But the surprises were not over. A "difficult baby" eventually led to a diagnosis of autism and a host of other comorbid diagnoses. Now we were not only a blended family but also a "special needs" family. And those statistics are even worse. Divorce rates for families with a special needs child are said to be 80-90%. Those odds are not very encouraging. And here is where our love story really kicks in.
My husband has continued to work at a job that he had plans to leave. He goes every day because we need not only the steady income, but more importantly, the health insurance. He comes home every day between 3:30 and 4:00. No going out for a drink after work. He comes home to give me a break and spend time with our son. He rarely goes out with the guys.
Day in and day out, he is in the autism trenches with me. He changes pull ups on a 7 year old. He acts excited about the same damn airplane video for the 100th time that day. He stays home from gatherings with our son, encouraging me to go and enjoy myself. He takes numerous hours off from work to attend IEP meetings, doctor appointments, evaluations, etc. He pulls our 4'4" tall, 65 pound son on a tag along bike, and the child does not peddle. Many nights he gives up his side of our bed when Bambam has a rough night. We now joke that the guest room is daddy's room. He understands when I fall asleep on the couch by 9:00 many nights in a row from complete exhaustion.
My husband and I have not had a weekend away in over 7 years. I'm not sure when we will. I may not remember the last time I received flowers, but I do remember the last time he stayed home with Bambam and encouraged me to go have some "me time". I do remember the last time he paid thousands of dollars for doctors appointments and medications and therapies instead of getting a new car or a new anything. I do remember when he went out to play in 16 degree weather because Bambam was already out the door. I do remember that he always gets in the pool with Bambam, no matter how cold it is. I do remember that he is still here, everyday, being my tag team partner in this wrestling match called autism.
Now, none of this is to say that he is perfect. None of us are. He can be impatient. He sometimes yells when he shouldn't. And he's not very good at recognizing when he needs to step back and refuel. But he's here. Everyday. Doing his part. Loving our son.
I read almost daily about autism dads who leave. And daily I'm thankful that my husband is still here. A long time ago I was told that "love is the act of living out a commitment". If so, my husband is the definition of love. It may not be all roses and violins, but this is our love story. And I think its beautiful.
Bambam is now 7 years old. But he's also a really tall kid. So people often think he is 9 or even 10 years old. Unless they talk to him. Then they know that he's younger and most likely that he has special needs. But from across the room he looks like a typical 9 or 10 year old. This is quickly becoming a problem. Especially in public restrooms. I am starting to really dislike public restrooms and locker rooms.
Bambam is not yet independently potty trained. We work on this constantly. And he works really hard at it. But he's just not there yet. His fine motor skills are very delayed. He cannot go to the bathroom independently. Nor can he change his clothes independently. So when we are in public, I have to take him to the bathroom in the ladies room. We try to use family restrooms where ever we can find them. But they are not everywhere. And I'm left with no choice but to take him into the ladies restroom. We've worked so hard to get to this point that I refuse to take 2 steps backwards by not taking him to the bathroom when he tells me he needs to go potty.
This is also an issue at the recreation center at the fun house. This brand new facility has 2 very nice family dressing rooms complete with showers. However, the only way into the indoor pool is through either the ladies or mens locker rooms. There is no other way. So after I take Bambam into the family dressing room to get him all ready to go swimming, we still have to walk through the ladies locker room to get to the pool.
After getting strange looks during several trips to the pool, I finally tracked down the operations manager to talk to him about it. He confirmed that there is no secret passage to the pool. He then shared with me that he has 2 autistic brothers who as adults still cannot get ready to go swimming independently. So he understood where I was coming from. He simply said that we should do what we need to do to take care of Bambam. If other people have an issue with Bambam walking through the ladies locker room, that he would deal with it. He was very understanding and supportive. And I really appreciate that, really I do. But, it doesn't stop the looks or the comments being uttered (usually not so quietly).
Why are we all so quick to judge each other? A mile in my shoes people, a mile in my shoes.
As I've said before, we have great friends. And one of these great friends invited us, including Bambam, to their Superbowl party. Lots of food, laughter, a few cocktails, kids running around, the game on the big screen; just lots of fun.
And Bambam seems to enjoy these gatherings. He still mostly engages in parallel play; but he loves to be in the same play room with the other kids. And he watches what they do. And sometimes he even mimics them. Case in point:
2 of the other little boys (age 6) were dropping little lego men over the balcony to the stairs below. Bambam watched them intently, and then he tossed what he had in his hands over the rail. Unfortunately, he was holding a 15 inch, heavy plastic doll chair. Kuh thud, kuh thud, kuh thud. Luckily, nothing broke, nothing fell off the walls, no one was hurt.
And because we have awesome friends, no one was mad or upset. They get it. They understand that Bambam was not trying to do anything wrong. They understand that this was his attempt to join in, to interact and play WITH the other boys. As for me, I was even a little proud of that. We celebrate the small steps.
But, I still had to deal with the fact that he threw a large, hard object over the railing to the stairs below where kids were running up and down. So a new rule was instituted: No throwing anything over the railing. Things need to be black and white for Bambam, no exceptions. The other 2 boys shrugged their shoulders and scampered off to find some other mischief. And the party continued, the game played on. No harm, no foul.
I love our friends.
