Category Archives: ABA

Mike never met Boo

Yes, it has only been 48 hours since my bright idea to emulate Mike and Carol Brady. Funny it didn’t take a half-a-year for me to begin failing. I know, you want to pat me on the head and say give myself a break.

But truthfully I sometimes wonder where the brakes are.

Boo has been out of her school program for just over a week. I thought going away would be a great idea. We went camping and instead of camping we dodged rain storms. Being away set off her bowel issues.

Which I was prepared for, seriously, I have enough meds to rectify either option: Hazmat or Obstruction. What wasn’t I prepared for was Boo’s regression to happen so quickly. Only two days home from vacation and she is no longer feeding herself, not going to bed without screaming for over an hour (whomever said that children cry themselves to sleep after 10 minutes never met Boo) and having frustration issues.

I just do not know how to calm my child. First she wants her shoes off. Okay, I can do that. Then she screams, bangs her head and throws herself to the floor because they are off. I swear she made her head spin. Maybe it was mine.

www.goldderby.com

I caved and put them back on. Nope, she wanted them off. Then on. Then I want a cookie (her, I wanted a glass of pinot grigio–there was still some left in the box). I decide to put on therapist/mom hat and employ the ABA therapies. She wants the shoes off they stay off. She can’t decide between Oreos and goldfish? She gets her first choice even if she runs away asking for a donut.

I’m done at this point. Mike is nowhere to be found. Carol, well I don’t have her hair or patience. So I put on therapy hat…we will by all that is Holy employ ABA. If she wants her shoes on, then they stay on no matter how she screams. She wants cookies? Then she gets her first choice, even after she walks away screaming.

The icing on the cake? Allie comes up to me and says:

Is it times like this you wish Boo wasn’t Boo?

And I break, again. I channel Carol and explain, it’s not Boo that is the problem. It is that Mommy doesn’t know how why Boo is screaming. Why Boo can’t decide between shoes on or off.

Mommy just doesn’t get it sometimes.

That Allie or Mom or Dad can’t “fix” this, we just have to try anything that may work. That I have to put up with behavior I would never allow Allie to get away with. That Allie sees that Boo gets treated differently by her parents. That we have two children that we have to treat differently.

That is not Boo’s fault or really mine. But that whole Catholic guilt thing…with an added dose that as a mom we are not doing quite enough makes me wonder.

Why

Why don’t I have the answers. A mom is supposed to, right?

Why does Boo get so frustrated?

Why can’t she use her words?

Why am I so whiny. For Cripes sake my child has words, and can walk and can show her frustration. There are so many parents out there with less.

Why, oh why must I be down?

Why the freak can’t she realize she is supposed to sleep alone. Yes, she slept in my arms for a weekend camping. But that’s over now. Why does it take five nights to undo two?

Why if I have to be Carol is there not an Alice? I mean, seriously people do you think Mike and Carol would have been so calm without their Alice.

Just think how much easier life would be with Alice.

There would be pork chops and applesauce. That I wouldn’t have to cook or force Allie to eat.

Alice knew that the one thing not to stomach was a perfect kid. Although I wouldn’t mind that perfect kid for an hour or two.

Alice knew that a five letter word for exhaustion was ALICE. Another good choice would be MOMMY

Alice, when asked an unanswerable question would reply if the right answer meant a trip to Europe. I wonder if the girls would have to go?

Anyway, I kind of got off point (are you still out there), is I wonder if this gets easier. I thought Boo’s first days in the NICU were bad. Then I thought, when she threw up everything I put into her, that this was the hard time. Then and then and then….there are a gazillion times I thought life would be getting easier.

Then there was summer break.

And sleepless nights.

Wondering if I am every going to get being Boo’s mom right.

And so thankful, from the bottom of my soles, that Boo is back in school on Monday.

There better not be snow.

Why sometimes one child is so much easier

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This sounds horrible, but when I had Allie I was one and done. I mean D-O-N-E. I didn’t think I would ever love, like, have patience or stamina for another child.

Then along came a massive fire and Boo. Swear to God as any firefighter wife and she will tell you that fire = aphrodisiac to the Men that Are. Anyway, too much information but again there came Boo.

But a couple of weekends ago, Allie had her first sleep over. We had only one child and crazy dog (what exactly is a puppy who is not a puppy but not a dog called) to be responsible for almost 23 hours.

Oh my gosh, life was easier with one child. To be able to do things at Boo’s pace, to be able to sit in the quiet with her it was magical.

This past weekend, Allie went to a friends on Saturday. Called me at 4pm to let me know she wasn’t coming home. Hello, you are 9! You do not get to just call and say you have other plans. But because the friend is like a fairy godmother we let her stay. Hubs went to work on Sunday morning, leaving me and Boo to spend the day anyway we wanted.

We went for a great walk, where she screamed RUN at me. I tried to tell her we were walking, she said Donut. I ran. For a half-mile then slowed. Then she said Cookie. I ran, then slowed. CUPCAKE!!! I ran then said, screw it. I will not be guilted by a four year-old. I just walked a little further than I planned. It was a gorgeous day…

Notice how she is relaxing as I am just trying to breathe (nope, I am not sharing that picture!). I look at it this way, not only did I get exercise but Boo had speech therapy during the walk. And any rumors that she almost rolled back into the Canal are completely fabricated.

The best part of the weekend, sadly, was being able to focus on one child. Not distracted by a million other things. Please understand I do love both my girls. But to have 23 hours to just focus on one?

I quickly realized why only children are spoiled.

Listen

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On Fridays for 5-minutes I hop on the Lisa Jo Bandwagon and just write. Unedited, unrehearsed, just mind spewing to the keyboard.

Today’s prompt: Listen

Listen to your gut. I hear so many parents of children who have special needs that do not follow their instincts. Do not believe just because some one has MD after their name it means they are smarter than you. You know your child from the moment you first feel them move inside you. You know when they first look at you. You know when they first hold your hand. You know when something is wrong before the doctors do. Listen and follow your mother’s instinct to protect their young.

Listen to your soul as it expands to include a love never imagined. When you first conceive friends will tell you that there is an automatic feeling of love. This isn’t always true. With Allie I was too nervous, it took a while to feel that connection. It was there, I just didn’t listen to my heart because I was too worried I was doing something wrong. Then one day I realized that my soul had grown from the love she gave to me. Then Boo came on and it grew again. Kind of like the Grinch who stole Christmas whose heart grew three times too big.

Listen to yourself. This week there has been a lot of blog posts about how woman perceive themselves. Those who think they are fat, those who think they are too skinny, those who worry about the message we are sending our daughters on what a woman should look like. But we should worry also about our sons. They too suffer from body image issues. So listen to how you describe yourself, and stop. Because your child is listening to you and transferring those thoughts to themselves

Listen to the moments of opportunity. Let yourself forget your own struggles and help some one who needs it. It may be as simple as educating a cashier at a grocery store that the word retard is not an adjective. It may be just stopping in an elevator and hugging a stranger who is having a hard day.

Listen to your children. Yes, it is so hard when they talk non-freaking-stop. But once in a while you may discover that they know more than you do. Listen how they stop and spy a spider web that is home to a fairy. Don’t you wish you could hear what they hear?

Listen to yourself, you might be amazed at how awesome you are.

Stop. Okay enough preaching. Go and enjoy the weekend!!!

The Hardest Part of My Day

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There are some days when all I want to do is give in to Boo. When I want to just give her a cupcake, okay a third cupcake. I know, in my heart, that the ABA therapies are working. That Boo is better with all the work her therapists do with her on a daily basis. Sometimes the work gets the best of me.

At workshop when Boo gets stubborn they wait her out. They make her do her work (I wish they could make Allie do her homework). But at home I struggle. If I ask Boo what sound a monkey makes and she doesn’t answer we move on. After all there are dishes and laundry to do, hugs to be given and Allie’s homework to be done. Concerts to be ~~tortured~~ enjoy. Oh and dinner to be made.

At school she HAS to answer. Now I know what you are thinking. Does it really matter if Boo answers OO AA for a monkey sound. Probably not. But if some one asks Boo her name she HAS to answer. Especially if she goes missing. Since she refuses to say her name that is an issue. And it all starts with OO AA.

Actually it starts with her name. She will say it, sometimes quietly, when asked. But on her terms, her oh so stubborn terms. She digs in on the most surreal things. Okay surreal to me. Why doesn’t she want to say OO AA? I mean she said it the whole way to Niagara Falls. Over and over again. I wish I could have an inkling into how her mind works.

I spoke to her speech therapist about it. She feels that sometimes Boo has a difficult time finding the word in her brain. Like there is a detour or misfire. She will consistently say cow but then the third try she says cat. Almost as if the repetition is tiring on her brain. She encourages us to continue fighting for those moments when Boo is in the moment and can say the word or perform the action we are demanding.

Her SPT reminded me to be the mom and not the therapist. That it is a hard, difficult balance between the two hats we have to wear.

And that’s the hardest part of my day, when I have to be the therapist and not the mom. So we went home and had cupcakes for dinner.

This extremely non-funny post for the Finish that Sentence Friday is to be blamed on the hosts. Usually I can go light but well it has been that type of week. What with falling down and all…

Let’s hope next week’s sentence is something like….Believe it or not I let my husband live after he….

Meet Boo’s friend Zachary!

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I’d like to introduce you to Boo’s friend, Zachary. Zach is a fabulous boy in Boo’s class who happens to have autism. Zachary was the first boy to hold Boo’s hand. It was so awesome, watching them walk into school together.

Like Boo, Zach is a frequent eloper. If your child has never eloped count yourself lucky. Boo has tried to escape us many times. Not on purpose or intent. She is just not aware that she is no longer with our group. We can be in the yard playing, blink for just a moment and she is gone.

It is a scary moment for any parent. But for a parent like Zachary’s mom, Laura, it is beyond terrifying. You see, at fiveryears old Zachary is considered non-verbal. He would probably not respond to calls of his name, nor would he be able to tell a stranger his own. Zachary is always in motion. Like Boo, unless he is contained in a stroller he is off. He has no awareness of the danger. At home doors must be securely locked (even in the heat of summer) and windows must have a no-escape feature. He sleeps in a secure tent to limit the chance of him wandering while his parents try to sleep. Yes, I said try. Any of us with a child who has the need to wander sleep with one ear open.

Zach’s awesome parents are turning to 4 Paws for Ability, a non-profit organization that places certified service dogs with children of various disabilities. In Zachary’s case, his dog would be trained to provide sensory input, interrupt dangerous behaviors, calm meltdowns and most importantly the dog would keep Zachary safe. The dog would be trained, in the event that Zachary did elope to find him. The dogs are trained to follow his scent and locate him within minutes.

What more could a parent ask for? Well, the money to provide their child with the security he deserves. A certified and trained dog costs $13,000. Parents of children with special needs do not have discretionary income. Our children cost more than the typical child. Our incomes are lower than before as we need to take more time off of work for therapies, doctor’s appointments and other activities to assist our children. Our free money gets spent on sleeping tents, door alarms and adaptive equipment.

To have $13,000 to spend on anything would be huge. To have the money needed to provide safety for our child would be a miracle.

I asked Laura if I could share her story to spread awareness. Last month two families lost their child to autism. Yes, I went there. Autism was the culprit in their death. A child who eloped for less than 20 minutes from her grandmother’s house and was not found alive. This is a tragedy. If it only takes a dog that can locate a child within minutes and save a child I am all for spreading the word.

I am also hoping to help Zachary in his fundraising efforts. They have currently raised $2,400 towards security. If everyone who reads this blog donates $13 then forwards this post to 20 of their friends who donates another $13 it would only take a thousand readers to provide Zachary with a safety friend.

And allow his mom and dad to sleep a little more soundly.

To donate please visit http://www.razoo.com/story/4-Paws-For-Zacharyor you may mail a check with his name on the memo line to: 4 Paws for Ability, In Honor of Zachary Fiorillo, 253 Dayton Ave., Xenia, Ohio 45385. (If you do send a check, please remember to add Zachary’s name!).

To learn more about Boo’s amazing friend, please visit: https://www.facebook.com/4PawsForZachary

Workshops…not the end of the world!

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When Boo began her new program in preschool it included monthly workshops. The workshop is once a month for 2 hours where a parent observes the ABA/discrete trials that our child undergoes every day.

The first workshop was very difficult for me to observe. I am happy to report that every month since then has been easier. At first I was just so unprepared. I didn’t know what ABA was or the whole ‘compliance’ issues.

Eight months later, I love the workshops. I get to know Boo’s therapists/aides better. I learn that Boo is not saving her stubborness for home. I realize why Boo is so disjointed on the weekends without the routine of her school day. Not that this knowledge will help me with devising a weekend routine.

But if you are honest with the team and allow them to be honest with you (in other words, don’t think your daughter is a princess) both “teams” end up serving Boo in the best way possible. I relayed some issues we are facing this summer (we live near a beach and Boo is afraid of the sand) and they will invent a program to make the beach easier.

The other bonus of the workshop is I can fill the team in on Boo’s medical updates. I can tell them face-to-face what programs neurology and/or developmental medicine want to add and Boo’s team is usually one step ahead of the game.

We are never leaving this town. I still haven’t figured out why Boo’s program isn’t available everywhere. But I think we should make it our mission to find funding for your town.