Panic

The panic is creeping in. I feel it in my bones, pulsing through my veins. It's the kind of panic that wakes me up at night. I may be over reacting, probably am. But it's how I respond.

School is starting in less than a week, 5 days. Bambam is transitioning into first grade. And we do not have an IEP in place, we have no plan for supports, no 1 to 1 aid. He has not met his teacher or seen his classroom. I have no idea how he is going to make it through a 6 hour day of first grade.

This child who struggles with transitions and change, who struggles to sit for 20 minutes of table work, who cannot follow multiple step directions, who has visual and auditory sensitivities, who struggles just to BE in a classroom, let alone function appropriately and learn. This child who had a 1 to 1 aid in kindergarten and still had to leave the classroom every 20-30 minutes to decompress and regroup. How will he possibly make it through 6 hours of a chaotic first grade class?

I know deep down that his school will take care of him. We are one of the lucky ones with an amazing team who do everything they can to help Bambam reach his potential. They care about him, they enjoy him, they celebrate his talents, they do what they can to alleviate his struggles. They are honesty on his side and we refer to them as "Team Bambam". Even so, I feel unprepared. And that makes me uncertain how to prepare Bambam. And he needs preparation.

Even with preparation and supports in place, first grade is going to be a stretch. I worry daily about this. What will we do if he cannot function through a 6 hour day? Will we need to consider a "self-contained" classroom? This is one of my biggest fears. He learns so much from being around his typical peers, I do not want him isolated. The panic is creeping in.

Want to Play?

3 little words. Or in our case 2 as it sounds more like "wawna pway". As I sat trying to pay bills today, I was interrupted by those 2 words repeatedly. My quick response is "not now baby" or "I need to get some work done, I'll play in a little bit". But Bambam is persistent. Honestly, sometimes it can be irritating. I really needed to get the bills paid, I'm sure some of them are late. And, I really didn't feel like playing "Lets Go Fishing" for the 8th time.

And then I stop myself. How long did I wait to hear those words? Almost 6 years. A year ago he couldn't say them, didn't know TO say them, had no idea how to approach another person and initiation interactive play. For months we worked on not only the words, but the desired result. And last November when he came to me the first time and said unprompted "wawna pway?", well I almost cried.

So the next time he approached me and said "wawna pway?", I looked at his hopeful, cherubic face and said "Of course baby, I want to play with you". And we went fishing...again.

What Happened to Common Sense?

I've had a couple of experiences lately that have made me wonder what has happened to common sense. I understand rules and the need for them. In fact, for the most part I'm all about following the rules. Not doing so gives me anxiety. But, having an autistic son has also made me realize there are times when common sense must trump the rules. At least when it's ethical, moral, and legal to do so. I have my limits to breaking the rules.

Recently Mr. Fixit brought a new pair of sandals home for Bambam. That child is harder on shoes than any kid I've ever known. He goes through 5 pairs of tennis shoes every year, 2-3 sandals every summer, and countless water shoes for the pool. And he has bad feet so no synthetic materials, must have Velcro, yadah, yadah, yadah. We need a separate fund just to keep the child in shoes. But that is a different post. Bambam loved the sandals and they fit, success! However, the very first time he wore them, the strap broke. Now I'm the first to admit that he's hard on shoes, but the first time? That is unacceptable. Insert into my busy day a stop at the store to exchange them.

Off to the store I go, Bambam in tow. Anyone with a  kid on the spectrum knows that shopping with them is interesting at best, traumatic at worst. The lady at the counter is quick to inform me that without a receipt I cannot get a refund. OK, I don't want a refund. I want sandals for my kid. She takes us back to the clearance section (it is mid August) where they have a 2, 5, and 6 left. He wears a 2, awesome. She takes them out of the box and stands there while I try them on him. They fit, he likes them, no meltdowns while trying them on, success! I'm thinking this is a great trip to the store.

Then I follow her back to the checkout where she informs me that I have to take the sandals off Bambam so she can verify they are the same size and then I can put them back on. At which point Bambam starts crying and shouting "no shoes off, no shoes off". He's hypersensitive about his feet and he's quickly melting down. All I want to do is pay the difference and get him out of the store as soon as possible. So I say, "The only sizes back there were a 2, a 5, and a 6. It's clear he doesn't have a 2 and a 5, or a 2 and a 6, you could see the size difference.  And you handed me the shoes from the box. Can you make an exception please?" To which she replied, "It's the rule, you have to take the sandals off so I can check the sizes." Really? What happened to common sense? At this point if I try to take those sandals off, he will start kicking. I've been kicked too many times. 

I'm standing there not really sure what to do. What I want to say is, "Lady, I am not taking those sandals off. If you want to do it, you have my blessing. Go for it." But I bite my tongue. Many thoughts run through my head at the speed of light. One is to tell her he is autistic. To her I'm sure he looks like a spoiled 8 year old having a tantrum. He has no outward appearance of being different or special needs. But he's a 6 year old autistic child who is now in the full throws of a meltdown. This will not get better until I get him out of the store. So I have to make a decision, tell her or not. I struggle with this one constantly.

I do not like to wave the autism flag like a free pass. And I REALLY do not like to do it in front of him. Who knows what he comprehends from that. I don't ever want him to feel damaged or sub-par, or to use the autism as an excuse for not trying his hardest. We really work with Bambam to act appropriately and try to provide the supports he needs to do so. But there comes a time when we must cut our losses and run for the hills, regroup, and try again next time. We had passed that point 10 minutes ago.

I honestly do not know how the situation was resolved. I know I did not take the shoes off, I paid the extra $1.19 and we left the store as quickly as possible. But with a 6 year old screaming at my side, I do not know what she or the manager (who had miraculously appeared) said to me. All I heard was "no shoes off, no shoes off".  This was not our finest hour.

Now, in reflecting on this whole scenario, I'm still wondering what happened to common sense. And what I could have done better.

Scissors

I have a long failed history with scissors. When Miracle Boy started preschool at 2 and half (a topic for another post) he could do all the things the other kids did, except cut. His teacher asked me if I ever worked on cutting with him. My response was, "He's 2. No I don't let him play with scissors". My bad. He entered remedial cutting and was cutting like a pro 2 weeks later.

Flash forward 14 years and I now have a 6 year old autistic son who's fine motor skills are basically non-existent. He goes to Occupational Therapy once a week. They work on cutting every week (among many other things). And every week he struggles to cut on the lines. Miss Ashley, our very sweet OT, asks me how often we practice cutting at home. Ummmm, look down, shuffle feet. I'm not good with cutting. Sharp instruments in the hands of little people make me very nervous. Especially unpredictable little people who don't always follow directions or respond when you say STOP. I feel like I have failed my kids.

So imagine my surprise last night when I walk into the kitchen and find that Bambam really can use scissors. Granted, it was to cut a chunk of hair off his head. But I do not care that he now looks like a street urchin...my kid can cut! I call this success.

Despite our many failures as a parent, our kids not only survive, but thrive. God bless them.

The Players

Just in case anyone else ever actually reads my posts, I thought it might be helpful to introduce the players in my game of life. Although I could write volumes on each one of them, I'll try to give a concise snapshot.

I'm a 46 year old mom of 3 boys, two teenagers and a 6 year old. We are a blended family with a "yours, mine, and ours". I work part time for a boss who is amazing, flexible, understanding, and just plain awesome. My husband and I are also part owners in a business in our small town. And lets not forget the whole sandwich generation thing. My parents are elderly and I now have many responsibilities for them.

Mr. Fixit is my husband. He can truly fix anything. I have no idea how he does this, I believe it is a talent he was born with. And one he has to use daily. 3 boys means many broken things: toys, furniture, windows, cars, appliances, and sometimes skin, teeth, or bones. He's  also known as the resident medical personnel who takes out stitches, digs out deep splinters or performs other minor medical procedures. All this in addition to his own full time job which sometimes takes him out of town. I'm thankful that he is at my side most days.

Miracle Boy is my 17 year old son (the "mine"). He was given his moniker at 3 months of age when he had emergency open heart surgery. Given a less than 1% chance of surviving, he has proven all the doctors and specialist wrong. He is now a senior in high school, an honor student, a soon to be 4 year letter athlete, and generally a "typical" teenager. He is our kid that pushes the envelope on everything. Sometimes I think this is the result of knowing he faced death and won...he simply thinks there is nothing he can't do.

The Quiet One is my 16 year old stepson (the "yours"). The Quiet One became a full time member of our household a year ago. Even though he'd always spent a fair amount of time in our house, making the move here full time came along with some adjustments on everyone's part. I'll probably write more about that later. But, things seem to be working out pretty well. The Quiet One can easily slip under the radar as he is quiet, doesn't challenge you on most things, and simply goes about his day. Which, if he had his way would mostly include sitting in the basement playing video games.

Bambam is our 6 year old son (the "ours"). He was given his moniker by family friends as he is a BIG boy, very strong, and well, he actually looked liked Bambam from the Flintstones as a toddler. Bambam is on the Autism Spectrum, has sensory issues, is hypotonic, and very likely has ADHD. In spite of all these labels he is very loving and affectionate and is the a happiest kid I've ever known. He seems perfectly content to walk his own path in life, where ever that may lead him.

So there they are, the players in my game of life. Not perfect, but mine. And I'll keep them.

Welcome to blogging

So, am I really doing this? Am I starting a blog? I guess I am. So here goes...my first post.

I've toyed with starting a blog for some time now. And then I think, seriously? Its not like I don't have enough items on my ever growing To Do list. With 2 teenagers, a 6 year old with autism, a job, part owner of a business, responsibility for my aging parents (can we say Sandwich Generation?) and lets not forget the husband with his own job, what I need is one more item to add to that my list.

But that's not really how I look at it. Writing can be a release, almost therapeutic (and a lot cheaper than a therapist).. It helps me work through issues. It helps me clear my thoughts and gain perspective. Blogging isn't meant to be another responsibility, but an outlet. Like running. Something that I can do for me, to help me, and hopefully my family. Because as anyone can tell you, when you're dealing with teenagers, a stepchild, and autism, there are plenty of issues to chew on! So I'm going to give it a try and see how it goes.

In all honesty I've been stalking several bloggers. Reading them regularly and enjoying them immensely. Bloggers talking about autism, teenagers, raising kids, and family life in general. And I think I'm finally ready to take the plunge. I don't know if anyone else will ever read this or if it's just for me. But I'm giving it a try. Wish me luck.