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. 

Dear Couple...

Dear couple standing behind us in line at the grocery store, 

I'm sure you are usually very nice, polite, and respectful people. But not always.

We could hear you. I can assure that while you were whispering about my poor parenting and his bad behavior and maybe there is something wrong with him, that there is nothing wrong with my son's hearing. If I heard you, I can guarantee he did too. His hearing is 10 times better than mine. He can hear a hushed conversation in the next room through a closed door. Yes, he heard you talking about him. 

And the pointing and furtive glances were a little obvious. 

I realize his behavior is different. It can be almost unbearable on the bad days. A meltdown from sensory overload in the middle of a grocery store is not fun for anyone. In the entire store. But today was not a bad day. Today was actually a pretty good day. I would even consider it a win. 

You see, he did his very best to keep it together while we stopped at the grocery store for a couple of needed items on our way home. This was after a full day of school and an additional 1.5 hours of speech therapy. 

For my son who is autistic, a full 6 hours of school and the speech therapy on top of it pretty much takes everything he has. But I made the decision to push him a little today and make the added stop on the way home. And he was working really hard to maintain during this stop. Yes, he was bouncing around more than most kids would. And yes, he was talking a little too loudly, and about the same thing over and over (wanting to eat the bagel he had selected). And I'm sorry he bumped into you, but he did stop his verbal stimming (look it up) and said "I sorry". So, I honestly think he did a great job. A definite win. 

I realize that you didn't understand. Some times I think it's easier when he has a really bad day. At least then it is obvious to most people that he has special needs and is not just misbehaving. But on the good days, when he could almost "pass" his challenges are not as obvious. What looks like a typical kid misbehaving and acting spoiled is actually a child with challenges working really hard to mitigate them. At a time when he deserves praise and acknowledgement, you are judging and condemning him. And me, but I don't really care about me. I've grown pretty thick skin.

So yes, you heard me right as we were walking out of the store. I did tell my son that he did a great job. That I was very proud of him for doing such a good job in the store. I saw you turn around and give me that "look".  Was it disapproval, disbelief, disdain? I'm not sure but it definitely wasn't a look of encouragement or understanding, that I know for sure.

I wasn't sure how to respond to your look. I honestly don't encounter that look very often. I'm grateful that we most often encounter understanding, encouragement, and accommodations. So your attitude, your look, took me a little by surprise. Not knowing how to react, I simply smiled at you and guided my son in the other direction while he happily munched on his bagel.

I realize the world is full of uneducated, judgmental people. And I simply do not have time to education all of them. My priority is my son. But I would like to ask of you just one simple thing. Be careful when you judge what you see. Things are not always as they appear. Sometimes a smile of encouragement might be more helpful than a judgmental sneer. A little kindness goes a long way. Just a thought. It might make some mama's day just a little bit brighter.

Signed,
One proud mama of her special boy

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.  

Echolalia

Back when we were trying to get a diagnosis, any diagnosis, for The Boy and I was asked about echolalia I said he doesn't do that. And I was wrong. I was not completely versed (probably still not) in the subtleties of echolalia. The Boy most certainly does echo words and phrases, its just not always very obvious. And I am learning to see the different situation where he really does use echolalia.

When I look back now (hind sight is much closer to 20/20) I can see that whenever we asked if he wanted milk or water, he always answered water. Or whatever the last choice was. I finally figured this out by asking the same question in different orders a few times in a row. 

Do you want to wear jeans or sweats? 

Sweats. 

Do you want to wear sweats or jeans? 

Jeans.

All within one minute of each other. We've now learned to wait a few beats, then ask Which ones do you want? And then he can usually tell us what he really wants. Thankfully the days of meltdowns over misunderstanding his choices are (mostly) over.

I picked up on another subtle echo just last week. As I talked about in my post "We Survived...I Think", The Boy has had one illness after another this fall/winter. Last week when he came down with another (thankfully short lived) virus he started asking "You OK?" all the time. And I couldn't figure out why he kept asking me if I was OK. Until I saw the sniffles and runny nose. And it finally dawned on me, he was trying to tell me that he wasn't OK. So the next time he asked me I didn't just answer "Yes I'm fine", I then asked him if he was OK. And he said "No, don't feel good".

When ever The Boy is sick we ask him (probably too many times) "Are you OK"? So naturally, when he doesn't feel good he echoes "You OK"? It is not obvious (at least it wasn't to me initially) but he is echoing what we say to him when he's sick. Really, now that I'm writing about it, it is sort of obvious.

He does something similar whenever he has an accident or something breaks. He will yell "I OK!" Because what is the first thing you say when an accident occurs? "Are you OK?" So he gets straight to the point and the first thing he says is "I OK". Whenever we hear those 2 words, we know we need to go investigate. This may not be a true case of echolalia, but it does show how he makes strong associations between phrases and events.

I'm sure I'll discover more and more instances of where he actually does echo words and phrases. Its a never ending learning curve for me.

We Survived...I Think

I don't know about anyone else, but I am ready to be done with 2014 and start fresh and new with 2015. I hate to curse myself by saying it out loud, but I think we just may have survived it. It has been a rough year, especially the fall/early winter.

Bambam has been just awful since September. I know that I'm not supposed to admit that and say it out loud, but there it is. He has tried my patience and worn out every last one of my nerves. And I mean Every. Last. One. And I can't help thinking, if its been this bad for me then how much more immensely difficult has it been for him. Because I know behavior is communication, so all his miserably awful behavior was communicating to me how difficult its been for him. When in the midst of it, it is sometimes difficult to remember that. All I can see is a whiny, clingy, out of control child. And I have to remind myself to look for the reasons behind the behavior.

If I'm honest, it probably all started back in the fall of 2013 when Miracle Boy left for college. This was a huge change for Bambam, "Brother" was gone. Change is difficult for Bambam. He asked daily, sometimes hourly, where's Brother? When Brother home? I see Brother? He missed him terribly. And then Brother came home in November. Just to leave again in February, and this time he hasn't returned home. At least not to live. He visits occasionally, but he no longer lives at home. It is a new normal, for everyone.

Then, 2 weeks after school started in September, we moved Bambam to a new school. Everything he'd known about school for the past 3 years, gone. A whole new school, new building, new teachers, new aids, new SLP, new OT, new PT, new peers both special needs and typically developing. Everything was new. Have I mentioned that change is really hard for him? There were many anxious mornings, but we were muddling through. 

Then the days started getting shorter and the time changed. Talk to any autism parent, we HATE the time change. It totally messes with our kids. Bambam has an incredible internal clock. Since he was a tiny infant you could set your watch by when he woke, slept, ate, etc. Try telling a kid like that, with limited verbal communication skills and no time telling skills, they have to change all of their internal times by an hour overnight. To say it totally messes him up is an understatement. And we started having more anxiety and some sleepless nights and some new fears.

Then the illnesses started. I'm not sure what it was, perhaps a new school means a new germ pool (are they school specific?). But my kid who has always been very healthy with rarely even a sniffle started to come down with one thing after another. Sinus infection, noro virus, ear infection, noro virus again (lucky us), another ear infection. It seemed like he was rarely healthy. And the clingyness began. He wouldn't let me out of his sight. All of his whiny, clingy, miserable little self constantly around me.

Then, The Quiet One moved out (and into Miracle Boy's apartment, but that is another post) mid-October. And all of a sudden, Bambam was alone at home, no brothers. I did mention change is really, really, really hard for him, right? I think this year has had the perfect storm of changes for Bambam. He was beside himself, inconsolable. At times he would just start crying, no obvious reason.

By the end of October he was sleeping maybe 3 or 4 hours a night, if that. He had become fearful of the dark, any noise he couldn't "see", being separated from me, being in his own bed or even his own room, wasn't eating, had several accidents at school... The list could go on and on. He actually cried when I put him on the school bus, clinging to me. He's never cried on the school bus, he loves it. We were almost back to the days of his toddler or preschool years where he thought he was my appendage. Seriously, he never wandered more than 18 inches from me, followed me from room to room, sat outside the bathroom door talking to me the whole time (mom, you there? you OK? almost done? mom?). If I did have to leave in the evening for any reason, he cried the whole time I was gone. I'm sure that made Mr. Fixit feel wonderful. In a word, it was dreadful. 

And just for good measure, at the end of the year we throw in the holidays. All the decorations in the house changed, a tree in the house, visitors in and out all the time, going to visit relatives constantly, different food and treats, and no school for 2 weeks. The holidays are difficult in a good year. And this was not a good year. This year they were nearly impossible. We never did decorate our tree. Mr. Fixit put lights on it the day we brought it home and that was it. We had a naked lit tree. That fell over 3 days before Christmas. Breaking the lights. It seemed like a fitting punctuation mark to our year. 

But I am now putting that all behind us. With the start of the New Year Bambam is finally healthy, back to running gleefully to the school bus and eating us out of house and home. These are good signs. Here's hoping for a great 2015!