Message from the Admin
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For all of you who have recently posted comments and haven’t seen them, I apologize.  For some reason, the site has not been emailing me when a new comment is posted, so there were a lot of comments waiting in the moderation queue.  I’m not going to blame the software even though I think I had everything set up correctly…

Thank you for all your kind wishes.  I’ll try to be a better admin going forward.

Animals!

I was hoping to have something happy to follow the last depressing post. 2 days later, I do! Today was an awesome day! Melissa said today was Mara’s “best day ever” in speech. She has been seeing her for a year. April said she did great in OT, too. She also had a great session with her ABA therapist. But the greatest part of the day came when just she and I were playing this afternoon. Melissa said that Mara has been labeling items this week without any prompting. She has simply been answering with the correct answer when Melissa asks, “what is it?” I hadn’t seen her do it, so I decided to give it a try myself. I pulled out a bag of animals and asked her and she correctly answered most of them! Then, of course, I pulled out my phone to try to get a video. She willingly answered my questions again. Unfortunately I didn’t have the camera set right, so you can’t see her, but you can hear her! You have to use your imagination a bit, but this is just so exciting! Mara is 4 years and I have never heard her answer a question like this before. Today she answered tons of them! I still can’t believe it. What a great day!

Autism sucks

Autism sucks.  That’s right, I said it.  There is a new website called Autism Shines.  Everyone has heard of the organization Autism Speaks.  I am here to tell you that it does not shine, it does not speak…it sucks.  Please don’t misunderstand.  Autism Shines is a beautiful website with pictures of wonderful, beautiful people.  Autism Speaks does wonderful things for all those in the autism community.  I just feel like I am supposed to accept this horrible thing with a smile on my face and pretend that it doesn’t suck and I am tired of it.  I am supposed to pretend that all of the uncertainty, all the frustrations, all the tantrums and all the pain is just something that I accept and happily deal with.  I read a comment the other day from a mom that said she “wouldn’t have her son any other way.”  I don’t mean to discredit this mother at all, but that’s just something you tell yourself to make it not hurt so much.  I love Mara exactly as she is, but if I could do something to take away her autism, I would do it in a heartbeat for example i would ask for yahoo help in borrowing.

Perhaps I should explain why I am so down about all of this right now.  Mara has been doing very well.  Her language is improving.  She is even beginning to use some words spontaneously.  We were starting to feel like we were seeing some real progress.  Then something happened and this last week has been horrible! I don’t even know what happened.  She has had more tantrums than I can count.  They have been lasting for an hour or more.  She has been hitting, kicking and for the first time…throwing things.  The most frustrating part is that I have NO idea why she is throwing these tantrums.  Her ABA therapist says they are “automatic.” That means that she isn’t doing it to get out of working or because she is mad about something.  There is either something sensory going on or she is in pain.  Because her language is so limited, she can’t tell me what hurts.  We can work on the language.  I can handle the repetitive behaviors.  I can even manage through her sleep issues and poor eating habits.  But I can’t stand the screaming.  I need to know why she is crying and I need to be able to help her.  There has to be something I can do to help her and right now I don’t know what it is. 

I broke down in church yesterday.  I haven’t cried in a LONG time.  I had been standing outside with Mara screaming non-stop for 40 minutes.  I finally tagged Karl to take her out to the car.  I sat down and tried to pray and started to cry.  My dad was next to me and asked what was wrong and I said, “I can’t do this anymore.”  He put his arm around me and said, “Yes you can.  You have to.”  Of course he is right.  I have to keep going and I have to find a way to help my girl through whatever comes her way.  That doesn’t mean that it doesn’t suck sometimes, though.  So tonight, now that my sweet girls are tucked into their beds, I am throwing myself a little pity party.  Tomorrow I will put on my happy face and pretend that this is all okay and keep moving forward.

4!

Our sweet Mara turned 4 last month. Our 4 year old beautyI’ve been trying to find time to blog about her birthday and all that she is doing. It turns out, though, that having a 4 year old with autism who has 20 hours a week of ABA therapy, 16 hours a week of school, 5 hours a week of speech and OT, plus an extremely emotional almost 6 year old and a rambunctious 15 month old is, well…busy. So here is a bullet list:

Mara’s therapy is going great. She’s had a few rough days, but overall she is doing very well.

We switched to a new speech and OT clinic. Mara’s therapist, Melissa, opened her own clinic that is just down the road from our house. The added convenience is very nice.

Mara is starting to answer questions. This is HUGE and it has just started in the past week. I watched Melissa try this strategy with her and have been trying it myself and Mara is catching on very quickly. I say, “What do you want?” She usually repeats me and says “What do you want?” So I put my hand on my chest and say, “What do you want?” and then put my hand on her chest and say “chips.” Then I put my hand on my chest again and say, “What do you want?” and then put my hand on her chest and SHE says “chips!” It is so fascinating to see her catch on to things. What seems SO natural to me is a huge process for Mara. She has to learn HOW to answer a question, she doesn’t just figure it out. I am starting to see the light in her eyes when she realizes, “Oh! You want me to tell you what I want. You don’t just want me to repeat you!” It’s pretty awesome and I hope it is the beginning of a lot more progress.

There is a lot more to say, but the dishes are clean, the laundry is (mostly) done and my bed is calling my name. My wonderful neighbor and cousin, Michelle, took some amazing pictures of our family. I love that she captured some of Mara’s real personality and not a fake posed portrait. Here are our favorites!

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Blinders

As we go through our day to day routine, I often feel like a horse wearing blinders. I have my eyes set on a goal and there is no time to stop and look around. If I get distracted, I may freak out. Our daily routine involves taking girls to school, taking Mara to speech and OT and being at home for ABA. We honestly do very little other than those things. I go to the grocery store after the girls are in bed. Karl and I even split up going to mass on Sundays because Mara can’t handle church right now. Things are better recently, but for quite a while getting Mara into school or her therapy clinic was a HUGE battle. She didn’t want to get out of the car. Once out of the car she didn’t want to walk on her own. She frequently wound up on the ground kicking and screaming in the middle of the courtyard. I would have to carry her while she hit me in the face and I pushed Stella in the stroller. The goal in my mind was simple…get in the door. I would take a deep breath, keep my eyes on the door and endure being hit in the face. All the while I knew that strangers were staring at me, judging me, wondering why I couldn’t get my kid to behave, but I didn’t look at them.

When I watched the promotional video that Imagine A Way made about our family, one thing struck me: Why does Karl seem more emotional than I do? Why am I not crying? Anyone who knows us knows that he is definitely not the emotional one! I’ve been thinking about it and I think I understand it now. Because I spend so much time with Mara and Karl is at work, he is just a few months behind me. I grieved the loss of the childhood I imagined for my daughter a long time ago. I cried. A lot. Then one day I decided to put my blinders on. I decided that nothing was going to get done if I continued to be depressed about what was happening to our family. I like my blinders. They keep me focused on what is important…getting in the door, moving forward, helping my girl. I don’t have time to look and see what strangers are saying. I don’t have time to cry. If I break down, my whole family breaks down. Karl is coming out of the grieving process, too. He is wonderful with Mara, with all of our girls. It is because of him that I can stay home with our girls.

Keeping my blinders on may not be the healthiest way to deal with the stress of having a child with autism, but for now it works. I will continue to block out the distractions to the side and focus on what is most important…my family.

First 2 weeks of ABA

Mara’s ABA therapy has been going on for 2 weeks now. She is doing really well. She has two therapists and they come to our house to do the therapy. They come Monday-Saturday for 3 hours each day, with 4 hours on Mondays. I was worried that Mara would be exhausted but she seems fine.

Great things:
Mara has bonded quickly with her therapists. She knows they are here for her and she likes the attention. She is already making significant progress. The biggest gain is with potty training. I have been working with Mara for months and she was doing well, but now she is doing great. Before ABA I could get her to go on the toilet, but I had to do all the work. Now she gets on the toilet by herself, wipes herself and washes her hands herself. This is a huge deal simply because she is following directions with very limited prompting. Mara is also doing well with compliance. Simple things like “come here and sit down” are becoming much easier!

Not so great things:
Mara frequently cries for no reason, at least no reason I can understand. She’s had terrible tantrums in the past but this behavior doesn’t seem like a tantrum. She seems sad or hurt and I have no idea why. My best guess is that it is a sensory thing and she is just overwhelmed. Everyone is at a loss as to what do. Sadly, the best way to calm her down is to leave her alone and let her cry.

How my life has changed: First of all, the house is a lot cleaner than usual. I know someone is coming over every day and they need room to work so I make sure to pick things up. I can breathe a little better knowing that Mara is getting the attention she needs while I do laundry or play with Reese and Stella. The bad part is that someone else is in my house, playing with my girl, helping my girl in ways I know I could. There is nothing they are doing that I couldn’t do. I am her mother. It is my job to teach her, potty train her, tickle her, play with her. It is difficult to watch someone else doing what I desperately wish I could do.

The good definitely outweighs the bad and we are so excited to see more gains for our girl. They are making Mara’s life better. In the end I know it will all be worth it!

Where we are now

Mara’s ABA therapy is all set to start this Wednesday. She will be getting 20 hours a week thanks to the wonderfully generous people at Imagine A Way. 19 of those hours will be at home, 1 hour will be at the clinic. Mara is going to be one busy girl. I wanted to document the skills Mara has now and the progress she’s made up to this point.

Expressive language: This is Mara’s most significant challenge. At this point she has limited verbal language. She has a huge vocabulary but does not use it functionally. She can repeat nearly anything she hears and often “scripts” from movies or books. She has really progressed in the past year with making requests. She will even spontaneously make requests using one or two words every now and then, but she isn’t consistent. She loves music and can sing entire songs. She does not use any signs or pictures to communicate, but that’s fine because we know she can use the words. She often grabs my hand and drags me to what she wants, even puts my hand on a door knob to indicate that she wants it open. Mara doesn’t answer any questions. I would love for her to be able to answer simple questions such as “What do you want?” or “Do you want water?” Right now she answers with “Water” instead of “yes” or “no.” Everything is on Mara’s terms. If she is in the right mood, she will say whatever you ask.

Compliance: Mara’s receptive language has really improved lately. We’ve always known that she understands most of what we say. Her ability to follow directions lately has improved greatly! She is following one step directions regularly. In speech she has even started to give her therapist a requested object when given two choices. I haven’t been able to get her to do this much at home.

Social skills: Mara’s social skills are severely impaired. She does not interact with other children at all. Occasionally she will approach a child to see what he or she is doing. If it is something she is interested in, she will want to do the same thing, but she does not interact. Mara’s engagement with adults is much better. She loves her parents, grandparents and therapists. She really loves to be tickled and genuinely laughs when we play.

Sensory issues: Poor Mara really struggles with her sensory issues. 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. It turns out that pants are socially expected, so we really need to work on this one. She had a rash on her bottom that we are treating with an anti-fungal medication for 3 weeks. After 2 weeks it is gone and the pants problem is improving. Now it seems like a habit for her to rip her pants off immediately after getting them on. Mara is also constantly rubbing her nose with her shirt and often rubs it until it is red. She also frequently cries for no discernible reason.

OCD concerns: Mara has really started to show some OCD symptoms. When she leaves a room, she steps out, back in and then out again. She wants all of the kitchen cabinets open all the time. She goes to the refrigerator, opens it, and then walks off. She likes to open and close doors on her little jewelry box over and over again. When she accidentally bumps into something, she has to go back and bump into it again.

Potty-training: Mara is urinating in the toilet almost all the time. She does not tell me she needs to go. I either notice her doing a little dance and take her or I take her when it has been a few hours since she has gone. Luckily, she holds it and will not go in her underwear. She was holding it at night, too, but has recently started wetting her bed so we have her in a pull-up at nighttime (unless she takes it off after we leave the room). Bowel movements are a different story. She has had a BM in the toilet 3 times. All 3 of those times I caught her about to go and took her to the toilet. Otherwise she waits until we are not looking and goes on the floor. Of course we’re hoping to work on this one.

So, this is a boring post, but I wanted to write down some specifics so we can have a place to check back. We are expecting and hoping to see a lot of progress very soon!

Blessings

Some days it is difficult to see the hidden blessings in parenting a child with special needs, but they are there. I said before that God is helping us through the kindness of others. I am starting to realize that we are helping others as well. I received an email from Mara’s other speech therapist, Liz, yesterday. Here is a section of it:

I wanted to let you know that I’m truly so proud of Mara
and the progress she is making. It is so rewarding to work with her and
it’s days like today and sessions like the one I had with Mara that remind
me of why I love my job so much. Thanks for giving me the opportunity to
work with her.

She is thanking us for giving her the opportunity to work with Mara? I’d never thought of it that way. The people who work with Mara are growing and learning from her as much as she is learning from them. What a blessing that is!

The other person who Mara is seriously affecting is our 5 year old, Reese. I can’t tell you how much my heart broke a few weeks ago when Reese said, “Mommy, why does Stella play with me more than Mara does?” How do you answer that? I had no idea. I think I said something like, “Well baby, Mara is just not ready to play with other kids yet, but she’ll get there.” On the other hand, there are hidden blessings in this for Reese, too. Reese is very sensitive to people with special needs. She is always asking questions about people in wheel chairs, the blind, the deaf, etc. She knows that Mara is different than other kids. She has heard us say that she has special needs and has asked what that means. I try to tell her the truth without getting too detailed with my answers. I tell her that some people have a difficult time seeing so they need glasses, some people have a hard time walking, so they use wheel chairs. I tell her that Mara has a hard time talking, so she needs special teachers to help her.

While at a playdate with some good friends yesterday, I overheard Reese talking with her 5 year old friend. Her friend said, “I don’t really like Mara that much.” Reese immediately spoke up and said, “Hey! Don’t say that about my sister!” My heart broke and swelled with pride at the same time. I know Mara is going to have a very difficult time making friends, but I was beyond proud of her big sister. My friend later talked to her daughter and asked why she made that comment. The little girl said, “I don’t like it that Mara doesn’t talk to me.” Again, another hidden blessing. Mara is making it possible for other parents to teach their children about compassion and understanding.

I am truly so proud of all my girls.

Good days and bad days

I wrote this on July 5th and it has been sitting in my drafts ever since. We had a rough couple of weeks and I couldn’t finish it:

Today was a rough day. Mara had a tough time at speech. She cried nearly the whole time. When we got home she decided that she didn’t want to wear clothes at all. Her sensory issues were raging beyond control. Her allergies have really been bothering her and she has been practically trying to rip her eyes out. To me or you something little like a runny nose is annoying. To Mara it is all-consuming. It’s hard to see your baby struggle and it’s even harder when she doesn’t have the words to tell you how you can help. I’m tired and I’m frustrated and I just want her to be happy. I desperately want to have a day where I enjoy my children all day. There are good moments and bad moments in every day. I am just so ready to have a day where I think at the end of the day, “This was a really good day.”

I am only at the beginning of understanding autism. Any understanding that I do have is only about Mara’s autism. Like all kids are different, all kids with autism are completely different. Mara does not have classic autism. She does not have repetitive behaviors, she does not flap her hands, she isn’t bothered by loud noise, she has great eye contact and she is quite affectionate. She really struggles to communicate, though, and she has tremendous sensory issues. Her behavior is frustrating and fascinating at the same time. We are so anxious to get ABA therapy started. In my heart, I really think it will be a turning point for us. We are stuck in this terrible cycle. She exhibits frustrating behaviors because she can’t communicate. She struggles to communicate because her behaviors are taking over. We really believe that our little girl is stuck in there somewhere and someone holds the key to letting her out.

Today was a much better day. Mara’s last 5 therapy sessions have been MUCH better. Her therapists have described her sessions as “fabulous.” First, let me back up a bit. One of the most difficult things about all of this has been making decisions that affect Mara’s future. Choosing the right therapist, choosing the right doctor, deciding if we want to try medicine, diet changes, etc…these are HUGE decisions. We want to make the right decisions the FIRST time because a wrong decision costs us precious time (and often money). Researching things on the internet is overwhelming to say the very least. There is SO much information out there. Some of it is good information, a lot of it is not. Regardless, there are not enough hours in the day to go through it all. A while back I mentioned to a friend how overwhelmed I felt about all of this. She said it sounded like we needed a “team lead.” I thought that sounded like a good idea. Karl and I make the decisions for Mara, but we needed a knowledgeable, experienced person who really knows Mara to guide us. The doctors were not an option. Knowledgeable and experienced? Yes. Knows Mara? No. So we decided to put all of our trust in Mara’s speech therapist, Melissa. She is certainly knowledgeable and very experienced, but more importantly she knows, and loves, Mara. I received an email from her today that made me cry. Here is a portion of it:

Mara at speech therapy

When I first met Mara she barely made any eye contact, she tantrumed at least half the session, she wouldn’t give up any reinforcers without tantruming, she didn’t say any words on command for me, she didn’t scan items when given two choices, she didn’t independently walk back to the therapy room, she didn’t attempt to blow a horn or whistle, she didn’t fill in intraverbal phrases (etc. ready, set, ), she didn’t show recognition of me, and she wouldn’t play any social games with me.

Now she looks at me when I enter the waiting room and she recognizes me (and sometimes will say hi and bye to me with and without cues), she walks back to the therapy room with me independently, she can use a visual schedule, she fills in words to intraverbal phrases and songs, she takes turns with toys with minimal tantrums, she imitates 70% of words in my session, she scans objects and makes choices, she laughs and smiles and plays peek-a-boo and tickles with me, sometimes she independently requests items such as pretzels and ball when she sees them, she puts a whistle in her mouth and tries to blow and has even showed the ability to blow 1 time in imitation, she easily completes puzzles and shape sorters by looking and locating (not the easy way of trial and error), but most of all I see this AMAZING BEAUTIFUL SMART TALENTED little girl who ENJOYS being with me and is TRYING so hard to learn how to communicate. I just know that we are going to keep seeing this progress and I am going to continue to work hard to think of new ideas/strategies to keep challenging Ms. Mara :)

Today was a really good day.

Encouraging
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I witnessed something very encouraging over the weekend.

The girls are out of school for the summer, and Amy has lined up some summer activities.  Among them, swimming lessons!  I’m sure I don’t have to explain how hot the summers can be down here and the pool is a very welcome relief.  But now that there are three kids and only two of us, it’s more important that the older two are able to do some things for themselves.  Reese is really doing well and has been spending a lot of time underwater (now that she is comfortable holding her breath and has a pair of goggles).   She’s pretty excited about her new found skills!

I was a little worried that Mara wouldn’t get much out of the lessons, but Amy found a private instructor who has worked with kids with autism before.  She comes to our neighborhood pool for the lessons and is really good with Mara.

Here is the encouraging thing.  When we went to the pool as a family over the weekend, Mara grabbed hold of the edge of the pool and started climbing along it.  As she did she said, “monkey, monkey!” over and over.  Amy let me know that this is what they were working on in swim lessons the last time, even down to calling her a monkey to drive the point home.

I’m not able to go with Mara to therapy so I don’t see the things she does.  I do get a report from Amy, but it’s not the same as seeing it first-hand.  Mara is trending in the right direction with her therapy, but this is the first time that I’ve seen her learn and use a new skill so quickly.  This makes me really excited for Mara to start ABA therapy in August.  I can’t wait to see what she can do.

Until now, I’ve seen Mara’s Autism as a thief of time.  We spend so much time dealing with her needs that I feel the other two get shorted.  However, if Mara is able to make some strides with this new therapy…  who knows what the next year will hold.