ABA 2 years later

ABA 2 years later

It’s been nearly a year since I’ve written anything here. We attended the Imagine A Way gala a couple nights ago and it reminded me that I really want to update them and anyone else we don’t see regularly about Mara’s progress.

Mara is almost 6 years old and she has grown so much! She is happy 95% of the time, which is a huge improvement from a couple of years ago. She has almost no meltdowns now. This is thanks to therapy, medication, increased communication and maturity. Her life is so much better and our family can function so much better without meltdowns. She does still have the occasional episode of crying with no clear reason, but I am confident that she will soon be able to tell me what is wrong so that I can help her.

The most exciting update is that Mara is learning to read! She proves me wrong over and over again. I used to think that she couldn’t be potty trained until she could say, “I have to go to the bathroom.” Well, she still can’t say that and she’s been potty trained for over a year. I used to think that she wouldn’t be able to read until she could have a conversation. Wrong again. I believe more every day that there is nothing that my daughter can’t do.

Her expressive language is still significantly impaired, but she is making great progress. She makes some requests spontaneously. She answers many questions that we ask her. She still does not tell us anything about how she is feeling. She does not ask us any questions. I know that with time, these things will come.

She started kindergarten this school year and she is doing very well. She spends about 2 hours a day in a mainstream classroom with an assistant. The rest of the day is spent in an autism classroom where she receives her academic instruction and language support. We had our annual special education meeting yesterday where we tweak, rewrite and write new goals for her individual education plan (IEP). The most interesting thing in her IEP is that she doesn’t have any academic goals. I felt a little defeated when I first found out about this. I quickly realized, though, that this is a great thing. IEPs only include goals for objectives where the child is behind his or her peers. Mara is on grade level for academics, so her goals are just the regular kindergarten curriculum. The mainstream kindergarten teacher sends the same work that Mara’s peers are working on to her special education classroom. Mara then works on it in an environment where she can focus better and get one on one support. Her teachers said it is unusual to have a kindergartener come in with so many skills. This gives us a lot of hope for the future. Mara’s therapists are all convinced that one day soon, the flood gates will open and her language will explode.

While we are very thankful for all the progress we have made, there is an aspect of ABA that I am growing to dislike more and more. ABA is designed to help autistic people learn to communicate better and help with challenging behaviors. A common trait in autistic people is self stimulatory behavior, or stimming. I’ve grown to realize that this is not a bad thing. Not only that, but it is a necessary thing! Mara stims on a regular basis. She likes to carry small, but heavy, toys in her hands and bounce them up and down as she runs back and forth across the room. There was a time that I wanted her to stop these behaviors, but I have completely changed my mind! She NEEDS to do this. It calms her and helps her organize herself. The strategies in ABA are intended to help her replace these behaviors with something more “appropriate.” The idea is to help her “appear less autistic.” I’m done with this. She IS autistic. Our goal is to help Mara learn to communicate. We want her to share her thoughts and feelings with us. We do not want to change who she is. My job now is to make sure that her therapists know that Mara is allowed to stim and they are not to try to stop her. We can put time limits on her stimming, but if she needs to spend a few minutes bouncing, I am certain that it is necessary to let her meet that need and then get back to learning.

So while Mara has grown a lot over the past year, I’d like to think that I’ve grown, too. I’ve grown to accept my girl for who she is. I’d be lying if I said I wouldn’t be happy if she woke up tomorrow and wanted to play barbies with her sisters. I’d be lying if I said I didn’t wish it was easier for her to make friends and play with other kids. But I’m not lying when I say that I love her exactly as she is. She makes me smile every day. Nothing about her embarrasses me. She is beautiful, brilliant and loving and I am the luckiest person in the world to be able to call her mine.

Happy Birthday Grandma

Grandma and Reese

Grandma and Reese

My grandma would have been 91 years old today. She has been gone for 4 1/2 years now, but I still miss her every day. She died on Reese’s 2nd birthday. Mara was only 2 months old. She never got to meet Stella. It hurts my heart that my girls don’t remember her, but I certainly do. Grandmas are a lot different than moms. They don’t have to discipline us, they get to buy us whatever we want and they think we are perfect. Just ask my girls how they feel about Nannie. I remember many things about her, but what I remember most is the way she used to rub my arms. She would run her fingers down my arm as lightly as possible. My siblings were all too ticklish to let her do it, but I loved it! I would even ask her to do it when I was in my 20s and she would say, “Oh Amy, that’s so silly.” And then she would do it anyway. She always called me, “dear.” She would always buy me a game or a puzzle when I was sick so I would have something to do while I stayed home. I watched the Young and the Restless and Guiding Light with her. I miss her.

I talk to my grandma all the time. When I am having a rough day, I talk to her. On more than one occasion, when Mara has had a particularly bad meltdown, I’ve held her tight, stroked her arm like my grandma used to do to me and asked my grandma to help me. I kid you not, it works. At our church there are 4 windows in the dome above the altar. They are the only windows in the church that are not covered with stained glass. My grandma watches me through those windows. I know how that must sound, but it’s true. When I sit in church and actually have a moment to pray instead of wrangling children, I look up into those windows and I know that she is watching me. I feel a warmth and a peace that I just don’t feel any other time. She is my guardian angel.

This post will be short because I just don’t have the time to continue crying right now. Lunch needs to be made. I just wanted to write this today to say Happy Birthday Grandma. I miss you.

Grandma and Mara

Grandma and Mara

I don’t know how you do it!

This is a phrase I hear a lot from others.  It goes right along with,  “Wow,  you really have your hands full.”  These comments don’t really mean anything,  I know that.  The person saying them never means to make me feel uncomfortable.  It’s just a comment,  small talk,  and the person may even mean it as a compliment.  Nevertheless,  it does make me uncomfortable because I don’t know how to reply.  Do I say, “Thank you?”  Do I say,  “I don’t know how I do it either?”  I suppose what I should really say is the truth,  “I don’t do it”  or at least,  “I don’t do it well.”  I promise I’m not looking for someone to come back and say,  “Oh,  yes you do.”  I definitely am not looking to be a martyr here. It is the truth.  I don’t do it well,  I’m not perfect.  I lose my temper a lot.  I cry.  I want to get away for a night,  a weekend.  I try my best and I don’t know anyone who would do it differently.

Some friends of ours became parents a few years before we did.  Their son had cerebral palsy.  He struggled in many ways.  We babysat him one night and when we came home,  I told Karl,  “I am so glad God chose them to be his parents because there is no way I could do it.”  Looking back now,  I feel horrible for ever saying that. Mara’s struggles are nothing like what this family faced,  yet we have a lot in common.  We both love our children and we do “it”  because they are our children and it is the only thing we know how to do.  Our friends son passed away when he was only 8 years old.  I don’t know how my friend would feel now if I told her,  “I don’t know how you do it. I don’t know how you get through the day,  missing your son and yet you still go on and smile for your other children and your family.”  I wonder if her answer would be similar to mine.  Would she say,  “I don’t do it well.  I cry and I hurt and sometimes the way I do it is just plain ugly?”

I didn’t want to write this to make others feel badly for making these comments. Like I said before,  I know they don’t mean anything by it.  I think maybe it is that the comment makes me feel guilty.  I think to myself,  “Wow,  they think I am doing such a fabulous job,  maybe I should actually try harder then. Maybe I should stop taking breaks to play Candy Crush.  Maybe I should not sit on the couch and watch TV with my husband after bedtime and instead I should finish the laundry.  Maybe I should stop writing this and pay attention to Stella in this rare moment I have with just her.” I guess I just wanted to write this to tell others that I do this because I love my children and my family and I have no other option.  You would do the exact same thing,  probably better than me. 

So maybe instead of,  “I don’t know how you do it,”  you could say,  “God bless you!”  or “Your children are beautiful”  or how about,  “Want me to come over on Saturday morning so you can sleep in?” Ooh,  that last one would be nice.  :)

ABA 1 year later

I can’t believe the title of this post. Has it really been a year since we’ve started ABA? Mara has changed so much over the past year. I’ve changed so much and so has our family. There are many things that have contributed to all the change. For starters, of course the financial support from Imagine A Way has made an enormous difference. The hard work of all Mara’s therapists has made a big difference. Honestly, though, the majority of the positive change we’ve seen is due to the very hard work of one adorable, blue-eyed little girl. This kid is amazing. She struggles sometimes, but she works harder than most grown-ups I know. She has to do so much more to learn than other 4 year olds and I couldn’t be more proud of her!

Let’s start with the changes in Mara. A year ago (at age 3 years, 10 months) she barely said a word. If she dropped something on the floor and I asked her to pick it up, she would just have a blank stare. She had at least one, if not two or three major temper tantrums every day, and I’m not talking about typical 2 year old tantrums. I’m talking about screaming, hitting, kicking, I have to put her in her room and hold the door closed, otherwise I might hit her back, tantrums. These were the types of tantrums that lead me to start taking anti-depressants because I could not keep it together. A year ago Mara was not potty trained and she hated to wear clothes.

Fast forward a year to get a glimpse of our girl now at age 4 years, 10 months. She is potty trained. Hallelujah! Her tantrums do still happen, but they are absolutely nothing like they used to be. She can easily be redirected and can even try to talk during a tantrum to try to communicate the problem. Her ability to follow directions is amazing. It is very clear that she understands everything we say. Her language still has a way to go, but she has made so much progress. She will say anything that we ask her to say. She greets people when prompted and answers questions with and without prompting. There is some spontaneous language that we hear and I can see that about to emerge even more. While she does still love to be naked, she will wear clothing without much fuss at all. Best of all, Mara is happy. She is always laughing, giggling and smiling. She loves people and wants to be with them. She is frequently seen trying to grab everyone’s hand and bring them along when it is time to leave the house. She doesn’t want to be without the people she loves, especially her grandparents. She is also starting to show a lot more interest in other kids. She could still take or leave her sisters most of the time, but she is interested in other kids. Last night she played Ring Around the Rosie with her cousins on the trampoline… and I didn’t even have to hold her hand! She knows her name, her parents names (first and last) , her address and her birthday. She knows the names of everyone who is in her life and many other things. After a summer of phenomenal progress, Mara’s teacher told me this week, “It is like she is a completely different student.”

My life has also changed dramatically in the last year. I feel at peace about my decision to take anti-depressants. They helped me focus and calm down. It’s amazing what you can get done in a day when you are not crying and feeling sorry for yourself. Since the situation has improved so much with Mara, I have decided to stop taking them. I have been off of them for a week and the jury is still out about this decision. I have also grown up quite a bit in the last year. I used to be meek around adults I didn’t know, especially those in authority positions. I remember sitting in the speech waiting room about a year and a half ago with another mom. I was talking to her about things going on in Mara’s classroom and wanting to make sure that her teacher liked me. She said, “oh, you’re going to have to get over that.” She was right and those days are gone. My approach now is friendly and respectful, but you’d better believe I am going to make something happen if it needs to happen, whether you like me or not. Thankfully, my mama bear doesn’t need to come out very often because Mara’s team is amazing.

I’ve also grown a lot in my respect for other autism parents. There are many different schools of thought about what causes autism, which treatments are best, whether medicine should be used, etc. I have grown to understand that no matter what approach each family takes, we are all trying our very best to give our children the best life possible. There is no room for judgment. I’ve also learned in the past year how important it is to take time for myself. My life is completely about children and autism. I am trying to take steps to make sure that I don’t lose myself completely in all of this.

Finally, our whole family has changed in the last year. Because Mara is doing so much better, we have more time and energy to focus on the other very important pieces of our family. Karl and I try our best to remember that Mara is not our only child. I pray that Reese and Stella don’t grow up thinking that their needs aren’t just as important. We’re involving Reese in more activities and trying to make sure that Stella gets one-on-one time. We are better able to foster the relationship between all of our girls now, too. Karl and I also try to make time for each other. The divorce rate in couples with a child with special needs is crazy high. It is easy to see why this is the case. This will never be an option for Karl and I, so we have learned to make sure that our marriage is the number one priority to keeping our family together.

This past year has been exhausting, frustrating, exciting, unbelievable and 100% worth every bit of struggle! I can’t wait to see what the next year brings for Mara and our whole family!

Why fix it if it is broken?

In the first post I wrote about Mara’s autism, I said, “Mara is not broken.”  I still firmly believe this.  She is fascinating.  She is intelligent.  She is fun, sweet and beautiful.  I keep asking myself, though…if Mara is not broken, why am I trying so desperately to fix her?  Why are we spending ALL our time in therapy instead of going to the park or the pool?  Why do I want to change her?

I didn’t know the answer to this question, so I talked to Karl about it. I asked him, “Why are we doing all of this? Are we trying to ‘fix’ her?” He said, “No, we’re trying to help her.” “Trying to help her be more like us?” I asked. “No,” he said. “Trying to help her survive with the rest of us.”

It’s true. Mara can’t function in this world if she can’t communicate effectively. However awesome she is, she still has to be able to express herself. I just hope that we don’t take away part of who she is, who she was made to be, with all of the things we are doing to help her. Dang this is hard.

How did I miss it?

I have been having a hard time falling asleep lately.  This is very out of character for me.  Maybe it’s the Candy Crush puzzles running through my head that keep me from nodding off.  More likely, though, it’s the thoughts running through my head about my life and my children.  The most common thoughts I have lately are about Stella and her development.  She is developing just as she should.  She is definitely not on the autism spectrum.  I lie awake and I wonder how I could have missed the signs in Mara for so long.  I wasn’t seriously concerned about Mara until she was 23 months old.  At that time I thought she was regressing (and she was, she lost words that she had been using), but there were signs WAY before that.  Reese did everything on time. When Mara’s development was different, I just thought that she was different from Reese. I thought that was normal and everyone said I shouldn’t compare them. Stella is 21 months old.  She is doing things that Mara never did…things Mara still doesn’t do.  Stella is a little ahead of the game with her speech.  She has been in therapy, essentially, with all of Mara’s therapists around all the time.  I naturally talk to her the same way I talk to Mara, insisting that she use language to get what she wants. It isn’t her speech, though, that is so different.  When Mara was a baby, she never cried or called for me when she woke up.  She would lie in her crib for an hour or more and happily look at her mobile.  I thought that was normal.  I thought she liked her alone time. Stella loves to play with baby dolls.  Mara never did.  I thought she just wasn’t a girly girl.  Now I know that all little girls are supposed to play with dolls.  They are supposed to get excited about dressing up.  They are supposed to have preferences about what they want to wear.  Little girls are supposed to dance.  They are supposed to push other kids when they want a toy (Ok, maybe that’s just Stella).  They are supposed to say “mine!”  Little girls are supposed to enjoy coloring. They are supposed to get excited when they do something new and say, “Mama, look at this!” Stella does all of these things. Mara never did.

I don’t feel guilty anymore about missing the signs. I know now that I couldn’t have known. I knew nothing about autism 2 years ago. Knowing what I know now, I would have seen something in Stella months ago if there was something to see. Even though I am past the point of blaming myself for missing the signs, I still lie awake some nights and wonder how I could have missed them.

I lost her

Every night before Karl and I go to bed, we lock up the house. We have a lock at the top of the front door that the kids can’t reach. We lock that. We close the gate to the kitchen and double lock the door to the backyard. We have child locks on all the doors to the rooms (which Mara can now get off). Mara likes to wake up during the night and wander around, so, just in case, I scan everything that she might get hurt on. We sleep with the door to our bedroom open. I didn’t used to be a light sleeper, but I wake up every time my children cough. I watch Mara like a hawk. If she is ever out of my sight for more than a minute I go find her to see what she is doing. Karl and I joke that if one of us asks the other to go see what Mara is up to, the next words we will hear are “Get Down!” She is often found standing on top of Stella’s very tall dresser (which is thankfully bolted to the wall), or her headboard about to dive off on to her bed. She’s a climber.

Over the past couple of weeks I have read two heartbreaking stories about kids with autism wandering from their families. Both of the children were later found in bodies of water. It’s terrifying. I can understand how people quickly jump to judge these parents. How could they let this happen? They need to watch them more carefully! Like many things in parenting, it is easy for an outsider to say these things. The truth is, though, that you have no idea until you live it. I am confident that these parents did all they could to protect their kids. I know we do.

A few months back, Karl was working from home. Stella was asleep and Mara was playing. I asked Karl to listen for her from the office while I walked down to the bus stop to get Reese. As I came back down the street with Reese, Mara was walking toward us. Karl was still inside. He had no idea that she left. That night he went to Home Depot and bought a lock for the top of the door that she can’t reach.

A couple weeks ago we were at a family gathering. The adults were all in the backyard. The kids were going in and out playing upstairs. Mara had been interested in the toys that were up there all afternoon. She walked in the house on her own and I assumed she was going back upstairs. A few minutes later my brother, thankfully, walked in and found her headed out the front door. The girl is an escape artist. Many kids on the spectrum are. As hard as we try to protect her, accidents can and do happen.

We went camping with some friends last weekend. I was nervous because we were camping at the lake, but Karl and I took turns not letting her out of our sight. We had it under control. Early in the weekend Karl was putting up the tent and I was organizing our gear. I was watching Mara…like a hawk. A moment later I looked up and I couldn’t find her. It seemed like a long time passed when it was probably more like 20 seconds that she was missing. Our friend spotted her at the campsite across from us (closer to the water) with another family. She just wanted to see what kind of snacks they had. There were other kids and a dog there. Karl ran across and quickly grabbed her. The situation was so surreal at the time. It wasn’t until later that I realized just how terrible it could have turned out. It’s enough to make me want to stay in the house all the time.

If Mara ever really got lost, she would not be able to ask for help. She knows what her name is and we are working on her knowing our first names, her phone number, etc, but she is a long way from being able to go up to a store clerk and say, “I can’t find my mom.” There is no easy solution. As hard as I try, I cannot watch her every second of every day. It’s just not possible. I am about to order her a bracelet (wish me luck getting her to keep it on) from Road ID. I haven’t decided what to put on it yet, but it seems like a good idea to take a few extra precautionary steps. We are also taking swimming lessons this summer. I don’t really know what else I can do except lie awake and worry that someday we could be as heartbroken as the other families I’ve been reading about.

ABA- 6 months later

I can’t believe it has been 6 months since Mara started ABA. She has made more progress than we could have imagined! She continues to get 20 hours/week of ABA in addition to 5 hours/week of speech and OT.

I looked back at the post I wrote after we had been in ABA for 2 weeks. When we started on this journey several parents told me that we would someday look back and wonder how we had come so far. I am starting to see what they were talking about. I can’t believe this is the same kid we had 6 months ago. She has learned so much and is communicating SO much more! As a result she is a happier girl and we are all a happier family. She still has significant challenges, but the progress she has made makes us believe that anything is possible.

Expressive language:
The biggest change is that she frequently answers questions and makes requests. She will nearly always label items when asked. We simply ask, “what is it?” and she answers correctly. She also answers when we ask, “What do you want?” We sometimes have to prompt her with the answer, but she is starting to do this independently more and more. This has made life so much easier. There are also a couple of wonderful words she has learned. The first one…Mara! When you ask her her name, she answers! I love to hear her say her own name. Then there is the most awesome word I have ever heard her say…Yes! She has said, “no” since she was 2, but she has finally started to answer “yes” to questions and really mean it! You don’t realize what an important word that is until you have a kid who doesn’t say it. She did it for the first time in OT. April asked, “Do you want a lollipop?” and Mara shook her head and said, “Yes!” I squealed when I heard her say it. She’s said it many, many times since. I love it!!

Receptive language:
This is definitely the biggest area of growth. A year ago if I asked Mara to pick something up and throw it away, I would get no response. Now she follows directions all the time! It’s unbelievable. One of the programs she does in ABA is receptive ID. Given a field of 3 things, she is told “give me x.” This has given us a glimpse into what she really knows. Her vocabulary is huge! She knows so much more than she has ever let on.

Social skills:
Mara’s social skills are still severely impaired. She enjoys playing and laughing with adults, but not with kids. She has gotten very good at saying hi to other kids when I tell her to. She sees her friend Nate at speech and when I say, “Mara, say ‘Hi Nate'” she will repeat me. We are starting to see a little bit of a spark when playing with Reese. If I facilitate a game on our tablet I can get her to take turns with Reese. She even spontaneously said, “my turn” the other day. Hopefully this is an area we will see some growth in soon.

Sensory issues:
In the post I wrote after 2 weeks of ABA, I said, “Our biggest issue right now is keeping her pants on! The girl hates pants. Shirts are fine, but she would love to be naked on the bottom half 100% of the time.” I had to laugh when I reread that piece because we have made ZERO progress in this area. Miss Mara still loves to be naked. We have enforced a rule that panties must be worn indoors at all times. Shoes must be worn outdoors at all times (she started injuring her toes by dragging them on the sidewalk). This rule is so difficult to enforce. I help her put her pants on, walk away and she literally has them off again 2 seconds later. Perhaps we will just move to a nudist colony. Mara also loves to stand on her head. The pressure she gets must feel good. She can nearly do a headstand completely independently. She has also developed a new love for climbing. We have a date with one of her therapists to try a rock gym to see if we can find her a more appropriate venue for climbing than up the bookshelf in her bedroom.

Potty training:
We are almost there! She still doesn’t come out and say, “I have to go potty,” but she gives me clues. On a couple of occasions I have asked her if she has to go and she says, “yes” or just runs to the bathroom. Twice she has gone into the bathroom and gone by herself! Most of her BMs happen in the toilet now. The key has been Starburst. She definitely knows the drill. The routine is: go potty, wipe, flush, get dressed, wash hands, get a Starburst. She’ll go through the whole routine and then go back to the toilet immediately in order to get another one.

It’s been a crazy couple of months, but I wanted to post an update. I plan to get a couple more posts out soon.

Why am I writing about this?

Karl just asked me why I hadn’t approved any of the comments from my recent posts.  I had no idea I had any comments.  Thank you so much for all the support and lots of it from people I’ve never met!  Those who are calling me an “amazing mom” are my family.  They have to say that.  :)  I really appreciate all the comments both here and on Facebook. 

For quite a while before I wrote my first post about Mara’s autism I felt like I was hiding something.  Our family and close friends knew about her diagnosis, but I didn’t share it with acquaintances and certainly not on Facebook.  Of course, I didn’t have to share anything.  It is something very personal and really no business of anyone else’s.  As time went on, though, I started to feel guilty.  I kept posting things on Facebook about the cute things Reese would say.  Every time I did, I thought, “People are going to wonder why I never post anything about Mara.”  I wanted to talk about her, too, because I was (and am) so proud of her, but I didn’t know what to say.  Then we got the grant from Imagine A Way and I wanted a way to keep them up to date on Mara’s progress.  We also wanted a way to keep Karl’s family updated since they live far away.  When I finally did decide to tell the whole world (AKA, Facebook) it felt great to finally talk about our awesome kiddo.

Since writing the Autism Sucks post and receiving so many nice comments, I’ve been asking myself why I am doing this again.  I’ve come up with a list and I think I’ve decided that the pros outweigh the cons.  Pros: 1) It gives me the opportunity to share Mara’s progress with our family and Imagine A Way.
2) It gives me a place to look back to when I forget how far we’ve come.  3) It gives me something to do other than laundry, dishes, cleaning and you know, my full-time job of caring for our children. It is good for me to remember how to write a complete sentence with words that have more than 3 letters. 4)  Maybe, just maybe, I will say something that will help one other mother know that she is not alone.  Cons: I can only think of one.  I am afraid of exploiting Mara.  I am not looking for affirmations.  I am no more “amazing” than any other mom who does all she can for her kids.  I’m just looking for an outlet.  I do like writing and I am glad that a few people enjoying reading my writing.  I just want to make sure that if I continue to write it will be for the right reasons.  If I ever do say or do anything that in any way makes this a selfish venture, someone please call me on it!

Oh and last thing…if any of you who commented and say that you “get it” live in Austin, please tell me.  I really, really want a friend in a similar boat to have a drink (or two) with.