from the other side

We are what, 2 months removed from the big REMISSION announcement?

And what have I gleaned from being on this side of the autism world?

This side is joyous and scary at the same time. For as much as you LOVE your life now, you fear it too. I know that I need to give myself some more time to get a more accurate idea of what remission, recovery, feels like. I know this.

I also know the fear of the possibility that your child is regressing but you are missing it. Or worse. You are in denial.

That's the detriment of autism. It's subjective to opinion. By anyone. By everyone.

The hard part of recognising autism in your child is pushing through denial to see truth. To stop explaining away their actions. To stop saying, "oh, she's a little delayed but not every kid gets EVERYTHING when they should." And when they are 18 months and not really caring about anything other than rocking or flapping or lining up toys or screeching at the top of their lungs for no apparent reason or whatever their stereopy is...well, then it's quite evident.

But as a parent or caregiver, you always think back to BEFORE that consumed their life. BEFORE that was all they did to find some kind of early warning sign that you ignored. And IF you are blessed enough to go through the entire Autism and ABA process and find that beautiful child once again, you again think back for some kind of warning sign. something. so you don't make that mistake of missing something so evident. again.

It's hard. I'm being honest.

And no I'm not...'oh poor me, my child has been blessed with recovery and I still want to find something to cry about or get sympathy over.' I'm not. I'm honestly telling you that I think it will be YEARS before I will be able to relax about Maddy's development. If ever. The curse of a mother and the curse of a mother who has seen autism in her child.

Yes, I can see how wonderful she is. I can see the amazingness of having her back. I also see the delay. The literalness of her brain. I quiz her things and then quiz Maelle and when their responses are similar...then I breathe a breath of relief. And I am FOREVER grateful that I have Maelle to bounce is this normal? behavioral questions off of. (and yes I am grateful for Mae-Mae for more than that. She is SUCH a wonderful child. VERY loving and honestly, the best thing for Maddy. She mothers her and always makes sure she is taken care of. She has the sweetest heart and will make such a wonderful mother someday. Because that's what she loves to do. Mother. and LOVE.)

Maddy is still very literal. She does not comprehend things like "what do your hands feel?" I can see her brain thinking...my hands don't FEEL anything. They are not happy or sad or scared or mad or surprised. They are hands. They touch....so I find myself having to stop and rephrase things often. And I find that when Maddy is the MOST defiant about something...it's because she doesn't understand what the heck I am talking about. Even tonight I was telling her that when I talk, she needs to listen and she just stood there looking at me with a blank face. She didn't know what "listen" meant. Okay...you need to hear me. And then I explained that "listen" meant the same thing as "hear" - you hear with your ears. You listen with your ears. She smiled, understanding and off she went in her happy self. And I sat back and went...crap. What else am I saying that she has no idea about? And I seriously need to find a way to teach her that when she doesn't understand me to ask me what in the world I am talking about....on a three year old level.

She is doing well in school and seems to have friends there. Her school work is improving and I think she loves it. She really does seem to do well in the social aspect of school.

Overall, she has her quirks but is still learning and growing on her own without the use of ABA and that was the goal.

I know there are millions of parents out there that would give anything to be in our shoes. To only have to worry about constantly over analyzing their child's behavior instead of having to deal with daily ABA schedules for years and years on end. With only seeing minimal improvements and ultimately NOT getting their child back. I know this too.

I would be lying if it was all roses after the RECOVERED diagnosis. It's not. It's still completely awesome and I would NEVER want to lose it...and that is why it's so hard. Because we all had those smiley babies once and Autism took them once, to get them back and lose them again would be unthinkable and terrifying.

I refuse to live in constant fear. For now, just slight paranoia. I know it will subside. I have hope in that. God has assured me of that.

I have learned I have to let myself feel these things. I have to feel them. I have to go through them. I have to process and move on. And I share that with all of you because it's the reality. the honesty. another part of our journey through autism.

one year. one jigsaw.

One year ago, I was in despair. Absolute. Horrible. Despair.

What I remember of last July was the feeling of loss. It felt like my heart had been ripped out of my chest and I had no clue where to find it or how to piece it together again. I felt like an absolute failure. Truly. Because you want to be able to fix any problem that your kids have. Anything. From small to huge. You are the parent. Your job is to fix, right? Well...sure there are lots of problems that you simply cannot fix. Those are the problems that pull at your heart strings. And this gutted me.

Autism.

If you have never read this, I encourage you to read how I felt one year ago on my personal blog. The entry title is called Empty Jigsaw.

I have a hard time reading that...I feel too much of it yet.

On the 8th of this month...we received the official letter from Dr. MAL that Maddy was in remission. Her observed and tested scores proved that she was Non-Autistic (yes, I know...i hate that word too...autistic....). But it wasn't just those words that freed us. It wasn't just that we got to see the words REMISSION in all caps. It was the fact that a year ago, this child was suffering from moderate autism. Her overall age level was well below average at the 7th percentile.

7th. This isn't like height/weight...this is her cognitional living. 7th percent of her peers. It still makes me want to throw up.

Today she is at 63rd. She is average...slightly above average. 63! In one year.

Dr. MAL writes "The profile observed today is consistent with that of a typical functioning 3 year old."

Typical.

When you are a teen...you hope to be anything BUT typical...and someday I hope she does strive to be as non-typical as she wants in those years...but for now...TYPICAL is an awesome word.

I wrote last year that "they say there is no cure for autism. I say you don't know my God." Those were some heavy words. I will admit it. I probably erased that phrase a million times before I published the post. I hesitated. Who am I to be so bold? Who am I to declare that? Then I thought, who am I then if I don't believe that? Surely not a Christian. If I didn't believe that God was capable of removing Autism from my child then does that make Autism greater than God?

And let me say this...I believe that God moved mountains in our life. I believe He did amazing things. The FULL credit goes to Him.

I think sometimes people get confused by this though...that if they just pray and do nothing then somehow it was God's fault for not moving. I think we still have to work for it. He is in control but we have to be willing to do whatever. whenever. however. Trusting in Him. Proverbs 3: 5-6 says this "Trust in the Lord with all your heart and lean not on your own understanding, in all your ways, submit to Him and He will make your paths straight."

I know I'm getting preachy...hang with me. Where is the evidence of this...here we go. So first off, we just happened to move to a place where I would just happen to meet the most amazing group of friends and when Maddy was diagnosed, we just happen to be under the supervision of a doc who just happened to have studied under Dr. Mulich in Ohio who just happened to know alot about ABA, and when we just happened to pick Ann Carlsen Foundation, they just happened to send us to a conference with CARD who just happened to be founded by Dr. G. who just happened to be involved in the original Lovaas study with ABA and Autism....and CARD just happened to be working on the SKILLS database and they just happened to have a spot on their bata program for us and we just happened to be able to find a group of people willing to do ABA who almost all of them just happened to move here right around the same time as we did. And Maddy just happened to respond really well with ABA taught by a bunch of complete amateurs (don't worry guys, I'm board certified, right?! ;) ha) who 2 years ago had never thought about the steps to chain ABA programs. All of that just happened. Purely a coincidence. Right? I think not. I think that is God. Moving.

Dr. MAL writes "the support and advocacy that Maddy has within her family and community is outstanding, and her progress is directly related to their time and dedication. Her results are not typical of the expectations for ABA in general."

So thank you. all of you. My team. My prayer warriors. My community. My family. My God. Everyone. thank you.

When I wrote "empty jigsaw" - I could have never imagined writing this entry one year later. Never. And that is testament to how amazing our God is and how wonderful Maddy is. She is a miracle. She is a blessing. She's still three. She still has her quirks...today she tried to convince me she couldn't remember her alphabet (she can...she was just being 3).

Tonight after reading books, I set the books on the floor and stood up to put the girls to bed and Maddy says "No, wait, gotta clean up the books first, Mommy."

Really, kid?

Go for it.

This morning when she woke up, about an hour after her sisters, she walked into the living room and said "good morning, girls."

At supper with pizza all over her face she says, "look at me girls, I'm all messy!" And I love that she calls her sisters "girls" and "sisters" as well as their actual names.

Yesterday I asked her how she was and she said "I'm four." LOL. We're still working on that one!

I will not forget July 15, 2010. I will never forget the agony.

I will never forget the first time Maddy held my hand after an ABA session.

I will never forget the first time she looked into my eyes and said "i love you, Mommy"

I will never forget July 8, 2011. I will never forget the joy.

Maddy 3.0

I know...ack...I have SO MUCH TO SAY! The details of her ASD Remission...but first I had to write a post about her turning 3 last month...you can find that entry on my own personal blog ~Kitty Korner ~ Maddy 3.0

I will be back soon to post the details of remission. promise.

officially.

Maddy is considered to be in Autistic Spectrum Disorder REMISSION.

yes.

and I have so much to say.

But first I must celebrate.

Be back soon to tell you all the wonderful details....and they are wonderful.

how life is different now.

"Come on, friends! Let's pray!" Maddy exclaimed last night during supper. Ever the vigilante about mealtime prayer, Maddy makes sure we always thank God before, during, and after we eat.

Which is fitting. We should be ever thankful. For so many reasons.

Every night at supper, we sit around the table and talk about our favorite events of the day. We knew things were changing in February when Maddy started asking "what your day of the day?" - her version of what's your favorite time of the day today? and now she can answer for herself, whatever small thing it is, from going outside to play to eating Dora fruit snacks or playing at the church. And last night when she shouted that out during favorite time, I burst out laughing and Justin affirmed that that very moment was his favorite time of the day.

We are in the full swing of summer now. The summer schedule....which is...really...nothing. Both of the twins still have speech on Fridays and Maddy is doing a peer group speech session that involves 1 hour of peer time with her same speech teacher, Jen, and two other boys who have very limited speech. It is amazing to see our little chatterbox in a room with boys teaching them how to speak more. Sure, she has her own social speech issues to learn...she still answers the question: How are you? with I'm Maddy! but I cut her some slack since Maelle only just learned to answer that question with good, or fine, or great. If everything remains on schedule, she will learn that herself in about a month from now and I am thankful that she will learn it and the gap is no further than it always has been. Maelle is definitely more lingual and precise where Maddy is more physical and care-free. Maelle is shy and Maddy is overly outgoing.  Ah, twins.

And that is how life is different now. I really do have twins again.

Yesterday I was working downstairs trying to organize my basement and I began reflecting on the contrast from last year to this year. First of all, let me just say that organizing my basement is an understatement. I tell everyone that now that we are done with ABA...my goal is to recover my house. Housework took a beyond the backseat position in my priorities last year and I'm seeing the results now. Thankfully, it's just stuff and it really doesn't matter when it gets cleaned or organized....just as long as it does.

So reflecting last year, I have come to the conclusion that I didn't have twins last year, I had a 4 year old, a 2 year old, and 1 year old who was becoming increasingly younger stuck in a 2 year old body. That doesn't sound very pretty or nice. It sounds kind of mean and it's not meant to sound mean, at all, just the reality of having a child regressing so quickly into autism.

Now...the twins play together. Now I have the challenge of having 2 three year olds. And that is a challenge. Most people will tell you that the "terrible twos" is a sham and really three is the major challenge and I will concur. 3 is awful and great at the same time. They are old enough that they can do some things, they don't need minute by minute supervision....but they probably should have it for the things they come up with. 2 minutes of silence is 2 minutes too long. Lesson learned yesterday when they were both downstairs and quiet. I discover them eating a bag of lollypop suckers. AN ENTIRE BAG. They are covered in the sweet sticky goodness with grins on their faces and hair matted to their faces. Partners in crime. I have learned to laugh about these things and i threw them both in the bathtub...where they played for a good 30 minutes talking their Ariel dolls and swimming and laughing.

Now...I can explain things to her and know that if she doesn't get it, I can find ways in my own brain to explain it to her. I am capable of mothering my kids regardless of how incompetent I feel. That's the truth. That's the sneaky thing about motherhood...no one really warns you how dumb you will feel when you are in charge and you have no idea what you are doing. Marching through autism has taught me that. It has thickened my skin - so to say - and allowed me to take charge of my life, my kids, and my happiness. And ABA has taught me a new way of explaining things to all my kids, not just Maddy. I think I use my ABA brain more on Maelle and Eva than Maddy these days.

Now...the girls can spend the day with their great grandma and aunt and I have minimal worry. I don't have to be the mother hawk all day hovering over everything they do but I can let them spread their wings with others and know that it's ok. And for those watching them, I know how difficult the task of 3 kids is...but how much easier it is now than it was then. Then, it was not possible to leave them with anyone. Not for the sake that no one was capable, because people were....but it was beyond overwhelming to care for Maddy - let alone the other two.

Now...I've learned to worry less and love more. Maddy has her quirks and I hope someday we can lessen them but I'm not overly concerned about her future anymore than I am of my other girls. Sure....we all worry about our kids but I know she has a bright future just like Eva does and just like Maelle

Now...not one person could look at Maddy and say to me "she seems Autistic to me" (a phrase I will NEVER say about any child. The child has autism...but they are not autistic. It does NOT define them....you have cancer you are not canceric, are you?)  - she looks and acts like every other three year old on the playground.

and Now, I must go because Maddy just walked up to me and asked for a Handy Manny band-aid for her boo-boo so it will make it all better. then - maddy might have known she had a boo-boo but surely wouldn't have done anything about it. She would have never thought to find me, to seek help, to ask for help, that band-aids are to make boo-boo's better or that they even exist, and that Handy Manny has band aids and that we own some of those said band-aids.

oh how life is different now. and how forever thankful I am to God for that. So come on friends, let's pray and give thanks for such a wonderful blessing.

our video testimony for Skills

unsolicated.

I do have alot to say. I have much to report on as far as our Puzzle Event, our "good-bye to ABA" party and things.

I will get to those items. I'm just having a hard time finding the time to blog lately. As soon as one part of our journey slows, another part speeds up. I am not complaining. It's just been a bit eye opening as I thought as soon as ABA ended that things would ease up a bit and the truth is that while from Maddy's perspective, they have, but not for me. Granted, I do NOT spend my evenings staring at data sheets anymore nor to I spend my Monday nights holed up in my pseudo office trying to piece together material for our Monday night meetings.

Either way, we're all adjusting to life without ABA and soon enough, we'll be adjusting to summer and the break from preschool. The end of our state provided Early Intervention Services as the girls turn 3. Summer Speech Camp for Maddy and life in general with a 5 year old and 3 year old twins.

I will admit that things are easier. It's almost scary to say that. But it's true. Gone are the days when I couldn't go to the store alone with all my kids. I don't even remember the last time I have had to use the double stroller that I so heavily depended on not long ago. As we prepare for our trip to Indiana, I don't even know if we'll bring it. Both are so independent now that the stroller would be more of a nuisance now than anything.

So, with this new found freedom, I found myself with the twins at the store on Friday after speech therapy. I was gathering materials for our "Goodbye to ABA" party and the girls were being very good. Remarkably good. We definitely have awesome days and not so awesome days but this is normal. It is normal to have days when your nearly 3 year old twins don't want to comply to a single word that is coming out of your mouth. It is normal to have days when they are complete angel children.

Either way, it was a great day. As we pushed the cart into the check out lane, I got the inevitable, "Are they twins?" from the cashier. A mid-50s looking woman with a smile on her face.

I smiled taking a secret tally in my brain on how many zillion times I have been asked this question. "yes, they are."

"Oh one must look like dad and the other like mom."

"yes," I respond again.

"How old are they?" At this point, this is seemingly normal conversation for me and any random stranger.

"3 weeks from 3."

"My grandsons are 3. They're twins too." She shared with me, then out of the blue asks, "are they potty trained?"

Weird, but ok. "One of them is and the other is working on it." Ironic since not only was I buying party supplies but I was also buying Maelle's Good Job Potty Training  presents (that consisted of baby toys...as in a baby crib, baby swing, baby highchair...because she loves to play with her babies) for finally being fully potty trained.

She frowned at me. "Oh really?"

I kinda chuckled and said, "yes, and that's fine with me. I'd rather do one at a time then dealing with both of them at the same time."

"We didn't want to do that. We wanted to be done with it at once. My grandsons are potty trained," she clearly bragged at me.

"Good for them," I said honestly. Knowing what a relief it is to have potty trained children and how relieving it will be when all of mine are.

"You should really get her potty trained. Really. Before she is 3." She said in a pushy tone.

I shrug, getting agitated. "We're working on it."

I'm fairly certain that the girls must have distracted the conversation at that point. I don't remember much more than that. 

Part of me really wanted to stop that woman and try my best to explain to her what Maddy has accomplished in the past months that most children will not be able to boast about. She has nearly conquered Autism in those months.

Part of me rejoices that the next hurdle we have to cross is potty training. Something as normal as potty training. I no longer have to worry about trying to get her brain to make the connection that I'm in the room or that I'm her mother or that I'm talking to her or that I want her to want to be near me. I no longer have to worry that she doesn't care about the world around her. She no longer has the blank face but a face full of hope and love and joy and spitfire. The face of a child. Not the face of hollow fear.

I am slowly being able to accept her new behavior that is normal for a nearly three year old. Granted, she has her quirks, I am not denying that. She still does rock at night instead of sleep...we're working on it. She does repeat phrases like "hi, I'm Maddy" to me, as if I, the woman who named her, wouldn't already know that. But again, we're working on it. Socially, she is doing really well. That is the main concern. Can she socially interact and yes, she can. Does she still have moments where you can see in her eyes that she is getting near her limit of stimulation...yes? But those are few and far between. She is still 2. Even at 3, this is socially acceptable behavior. She is behaving in a way that her twin does and all it really takes is to ask ourselves, "would Maelle do this?" If the answer is yes...we can rest easy. If not, we access and deal with it.

I know that woman had no idea. She just saw happy nearly three year old twins. She saw a potty trained child and one that wears Pull-Ups. She did not see neuro-typical twin and twin with autism. Yes, we can be happy about that.

Don't get me wrong, there's still a part of me that kinda wanted to emotionally slap that woman for the judgement she threw at me. I'm pretty sure that is normal too. heh.