The Strong Willed Mother

Pretty much every parent I know would love the ability to be in two places at once. To not have to make tough calls and split our time between family and work..or play..or our other children. Lately, I've really been struggling with this issue. So much so that it's causing me a lot of anxiety. My eyelids have even started their dancing (which from my work background, I know is either caused by stress or lack of sleep. How about both??)

B starts Kindergarten this year and it's a full day program. I'm really excited for him to start, but it leaves us up in the air for all his therapies. Currently he's getting 2 hrs of speech, 2 hrs of occupational therapy, an hour of physical therapy and an hour of behavioral therapy. There is no way that you can keep up with all of that if you're working full time. So far it's worked because these therapists are able to go into his daycare and see him there. But everything changes once you enter the world of public school.

And it's not like I have the choice to just not work. When B was born, our schedule at work went a little crazy, but gave me Monday's off. I took advantage of those as therapy days once we discovered that he had some issues. I've contacted his therapy office but there just really aren't enough therapists that work extended/after school hours. And I was pretty much told that those who did, were full, and those patients tended to hold on to those slots for dear life.

So as of now we're on waiting lists. I know that we'll at least get one hour of OT in the fall. But it's not enough. Not when you have a child who still can't answer basic questions, who can't sit for more than 10 min, who at 5 still can't use a fork or isn't potty trained. We need more. The more that I get him now, the better off he'll be in the future. I want to ensure the best life for my child that I can. I know that's so common to all parents, but it's more of a fight for me. I want B to have a job. I want him to have friends. I want his life to be as full and rewarding as possible. Without the team of people supporting him, it's really really hard.

I keep pushing. Keep writing emails, calling people, having conversations with my supervisor (who has been great and sympathetic). I loved the term "Warrior Mother" (until Jenny McCarthy ruined that for me). So maybe I'll coin the new term: "The Strong Willed Mother". If one thing doesn't work out, I have to tell myself that something else will. There has to be another way to get this accomplished. Maybe if  I repeat that to myself enough times the worry wont sneak in. Maybe my eyelids will finally stop jumping.

Semi-wordless Wednesday

In honor of B's impending birthday next week I just wanted to share a few pictures from past birthdays! As usual, you can tell there's a them. We've yet to make it through the cake cutting/Happy Birthday singing without a meltdown. Thankfully he recovers quickly and loves cake and ice cream!!

We had a full weekend

B was in heaven this weekend. He had his Nana and 3 of his cousins here at our house. They moved to another state about a year ago. So visits with them are few and far between, but much loved. B's hyperactivity goes into over drive. He had a weekend of non stop running, being read to, playing in the pool, swinging, chalk drawing and constant snacks. When there are 4 kids in the house someone is always hungry. It seems that somehow B magically appears alongside the other child begging for food, and being so cute they'll give him anything he wants.  So until I have time to really sit down and write some bigger posts that have more meaning, I'll just share a few pictures of our fun.

(Why can't 8 yr old boys ever smile nicely for the camera?)

Happy Anniversary!

I'll take a break from talking about B and Autism for a day.

Today is my parent's 40th wedding anniversary!

Sometimes I don't know how they've done it. I'm sure it hasn't been easy. I've been married for 7 years and it's seemed to go really quickly. I wonder if 40 feels that way. I only hope that my husband and I can have 40 years together. He was 36 when we got married, so it's a possibility, though he'll be old. (I only say that because I'm 9 years younger than he is, and try to rib him about it as much as I can.)

So Happy Anniversary to you, Mom and Dad. I hope that you're blessed for many years to come and enjoy your day together!

Take the Cannoli

One of the interesting things that some people with Autism do is called "Echolalia".  Echolalia is basically a fancy word for repeating back words and phrases that you have heard. Many can repeat several words up to whole portions of dialogue. To me it's another amazing part of B's brain. Often these phrases come out when he's playing  or just talking to himself. Most of the time they have no context to what's going on around him (in my view). But I don't know if maybe something he hears or sees reminds him of what vividly lives inside his head.

Lately he has been saying "He's coming".  He says it in a slight panic. I will admit that part of me finds this particular phrase a bit creepy. It's as if he's warning us of something coming in the future.

He also will say words in response to your questions that have nothing to do with the actual question. Last night I was tucking him in and had the following conversation:

Me: "B is a boy...Mommy is a..."
(long pause)
B:" Astronaut!"

You never know exactly what you're going to get when you ask a question. He's just now getting to the point  where he can answer simple yes and no questions.  But you can be sure that he knows every word to the theme of the "Wonder Pets" and can tell you exactly what happens when Cranky falls down on the tracks during "Thomas the Tank Engine".

So that brings me to the cannoli. In case you're not familiar with this delectable dessert, it is an Italian confection that is a pastry tube filled with sweet creamy ricotta. Sometimes the ends are dipped in chocolate chips or pistachios.

B kept repeating the phrase "Eat a cannoli" over and over. It sounded like cannoli to me, but I couldn't figure out what he was talking about. After all, we had never eaten one around him, or talked about one around him. Even his speech therapist asked one day if he had been eating them because of his repeated talking about it. I couldn't even figure out what would even sound like cannoli and had given up. Until one day listened close to him watching Curious George on the Ipad. Sure enough, two of the characters were at an Italian restaurant and were talking about getting one to eat. It wasn't even a main focus of the episode, but somehow his mind had absorbed the tidbit and focused on it.

Today I set out to find a cannoli to have him try it. B is rather picky, but he has an affinity for sweets. (He's my child after all!)  We presented him with it after dinner. He went after it with gusto without hesitation! He was so pleased to be like Curious George and got to live a little bit of one of his favorite stories.

So in the words of Clemenza "Take the cannoli". And he did!

Wordless Wednesday

ABA

I know you would never believe this, but my child can be a little terror sometimes. Seriously. I'm sure that Autism only contributes a small part to some of his less desirable behaviors and a huge part of it is that he's 4 yrs old! And with a face like this.....

he can get away with almost anything. I just melt over those chubby cheeks and sweet blue eyes.

But we finally started ABA. I will say that I was a little hesitant. In my head I imagined a drill sergeant type of person that would come in and bark orders about everything I was doing wrong.  We're also not people who can always stick to an exact schedule so I worried that they'd want us to do the same things everything day in the same order and that would just NOT be happening.

I was very happy when Missy arrived. She has so much experience and I can really tell that she really likes Ben and wants him to succeed. So we're working on basic skills right now. Mostly focusing on things like potty training, and elopement (when your child runs away from you or your home), but the big push is on his destructive/mean behaviors. B has a habit of biting unfortunately, and hitting. Currently I have a nice scrape on my nose from where he grabbed it and scratched me intentionally the other day.

To me, parenting B, is just counter intuitive. When he does seeking behavior I revert into normal behavior. I gasp when he knocked off the full glass of diet coke because he was mad that I was on the phone. I've yelled. I've put him in time out. But what I didn't get was that he craved that behavior from me. As Missy explained, he wants attention, and any attention is good attention.

But what do you do when you have diet coke dripping down the wall? Apparently I'm supposed to go get a rag and, hand over hand, make him help me clean it up. He has to learn that his behaviors have consequences. Putting him in his room only works for a minute because he's happily entertaining himself within a few seconds.

So we're both being reprogrammed. I think it's going to be harder on me than him.

I have to brag

Please forgive me while I brag for a minute. But I married a great guy and since it's almost Father's Day, I want to give him a shout out!

We've been married since 2005. The first year was HARD. And I mean hard. We were both a little older and a little more set in our ways than some couples we know. It took a long time for us to really get comfortable with each other, to learn quirks, and to frankly, put up with each other. Sometimes we still struggle. He likes to talk about politics and money..I don't. I love reality shows and musical theater..he tolerates it.

But we have one big thing in common. We love B with all our hearts. He's a great daddy. The first thing he says when coming home is "Where's my boy???" I rank second in greetings, but that's ok. He gets the hard jobs, the physical stuff that I never have to do. When we're in public and we're having trouble getting B to behave or stay with us, he hoists that 53 lb boy up on his shoulders like he's a feather. Wiggling and all he manages to keep him inline.

I often struggle emotionally, and he's my rock. He's strong when I can't be. He looks toward the future and doesn't wallow in the "what could have been". He saves tirelessly to make sure that we're both well taken care of now and in the some day. The man can squeeze a penny and make two out of it. I often tease him for his thriftiness. I can't tell you the clothing I've had to throw out secretly because he thinks he can get another wearing out of it. 

He loves God. He's dedicated to trying to become a good leader for our house. He will tell you he'll pray for you, and mean it. He cares for his friends. 

He's not perfect, but he's mine and I love him for all he does. Thank you for being such a great Father to our special son!

Barren Heights

We were blessed this summer. I mean really blessed. And it all started with a chance encounter during a really hard afternoon.

B had an unfortunate accident in his britches while at church. The only place to change a child of his size without everyone seeing him just happened to be the nurses office. Fast forward to the Nurse's mom just happened to be there and saw that I was really struggling. She slipped me a piece of paper and gave me a hug and told me that we just *had* to go to this camp for families with special needs kids. I tucked it away excited and couldn't wait to look it up once we got home. Fast forward to the beginning of April when regsitration began and we were told that we could attend the first week of June.

I was a bit anxious. I have a child that likes to run, and doesn't want to do any activity that is highly structured. We weren't going to know anyone there, they might think I'm an overbearing parent..a helicopter mom. So we started the 2 hr journey toward Barren River Lake, excited and nervous. But all that melted away the second that the car stopped and we popped out. Ben took off like a lightning bolt toward the playground. He was quickly surrounded by several kids varying in age from about 9-19. They happily pushed my little guy on the swing and showed him all there was to do while we got settled. Toward evening 2 other families arrived along with the 3 host families that were already there.

And then something magical happened: we had a normal experience. I know that sounds weird to say that normal equals magical, but in our world every typical experience is something that we treasure.

The next morning was filled with a devotional time for the Moms and the Dads separately. I got to know two other women that had the same fears, hurts and fight that we had in our own lives. Sometimes knowing you're not going through it alone is what you need. Next came time for our trip to the pontoon boat with our host family. Now I have to tell you, I have a child that hates anything that is a ride. He refuses to ride the little horses/firetrucks at the store that other parents can't pry their kids off of. He hated Disneyland with a passion. But this was his shining moment. I told Dan there was no way that he would get on the raft being pulled by the pontoon. NO WAY. But wouldn't you know he made a liar out of me. As soon as the first group got done riding, he was feverishly trying to get on. He rode twice and had one of the biggest smiles you've ever seen.

I think that I learned the biggest lesson that day. I learned I CANNOT underestimate what my child wants to do. I need to learn to relax the rope a little bit and let him make his own choices. Yes, he has special needs, but he's still an individual. Capable of making his own choices and having his own desires. He is an amazing little man.

I have never experienced the kind of joy we had this weekend. By the end of our time there we'd flown a kite, launched water balloons at a barn, roasted marshmallows, gone for a walk, pulled B on endless trips in a wagon and connected with people on a really incredible, genuine level.

There is nothing barren at Barren Heights. God lives there. He breathes new life into those that need it. He gives respite and joy to hurting hearts through this place.

If you live in Kentucky, or nearby, and you know a family with children with any special needs please check this place out! www.barrenheights.com
You will have the experience of a lifetime!

Wordless Wednesday

Oh the crazy things

This actually happened a couple weeks ago..but thought I'd share.
B had Hand Foot and Mouth Disease (for the second time) so I whisked him off to the Doctor. Now I know that there's not anything that can really be done for HFM other than Ibuprofen and rest, but it just sounds SO bad. He seems a bit more prone to getting it than others because he constantly has his hands in his mouth. Not only does he touch everything, but he also has a mild case of Pica and randomly eats little things he finds on the ground. No matter how clean your house is, it will never be free of little pieces of dirt. Not to mention that the previous weekend we'd been at 2 playgrounds, church and the grocery store. And of course at the store he insists on sitting in the cart that has the car attached to it. Seriously, that is a pit of yuckiness, but it if helps us get through the store quicker without a tantrum, then we'll brave the germs.

Anyway, back to the original story....
I was busy paying B's copay for the visit and chatting for a few minutes with the receptionist. B was happily sitting in the sick side of the waiting room looking at the fish tank. Or so I thought.. I turned in his direction just to make sure he was still there when I realized that his shoes were now off and sitting in the middle of the floor. Something made me do a double take though..I turned around to see that not only were his shoes off, but so were his shorts AND his pull up. He was happily sitting naked from the waist down in the chair "entertaining himself". Not being a boy, I do not get the fascination with that. Thankfully he was alone in the lobby. There was a teenage girl there with her father, but the fish tank kept him from view.

It's things like this that keep our lives interesting. You never know what exactly will happen when you go out with B!

I'm glad you're here!

I've finally decided to give blogging a shot. Bear in mind, I've never done this before, so it may take me a while to get the hang of it. First, I'll introduce myself. My name is Megan I'm a mid-30's Mom residing in a little town outside Louisville. I have a soon to be 5 yr old son we'll call "B". He's the reason for this blog. He inspired the name, afterall. He loves to come up to you and say "So glad you're here today". Sure he may be just repeating something said to him at school/daycare on a daily basis, but I like to think that's his way of telling you he's happy to be doing what he's doing, and around you. He has lots of learned phrases that he loves to say at any time. Sometimes they make sense given the context and sometimes it's just something he's thinking in his head. Yes, it can get old, but I'm just glad that he's talking. It's been a long journey just getting him to this point.
B was diagnosed with Autism at 3.5 yrs old. We'd actually had him in Early Intervention programs through the state since he was 18 months but it really took us that long to come to the conclusion that something was just not right and we needed a definitive answer. Since this his diagnosis has been a longer journey for me as a parent. He's a mostly happy kid who loves tv, playing outside and just being a kid! His diagnosis was harder for me to accept but we've embraced it. I read constantly about Autism and definitely have my own ideas about it based on a lot of science. You wont find conspiracy theories here.  Just some funny stories that sometimes I can't even believe they're happening in our own house. I try to look back and laugh at most things..it's my saving grace.
So I hope you'll stick around and I really hope that I'll entertain you!