Diary entry of a recovering control freak.

What is wrong with me lately?

I can’t blame it on the weather. I can’t blame it on a full moon.I can’t blame it on hormones. I can’t blame it on anyone else but myself. I have struggled for awhile now with this attitude. Some mornings I wake up in a funk. Others I am great and then something happens and I’m a mess the rest of the day.

I really can’t put my finger on any one thing. It’s a myriad of things. For example, Lauren is now in school and it started off really good. I really like the teacher and the aides. About 4 days into the first week I’m informed she needs her own aide. This is never heard of. I can’t believe they told me this. Usually parents have to fight for their child to get an aide and they asked me if I would mind. Uhm, not really if it’s in her best interest and the interest of her peers… knock yourself out! But, my first impression of her new aide was, how should I say this? It wasn’t the greatest. She literally looked like she rolled out of bed, grabbed clothes from a laundry basket and ran. Her hair reminds me of Albert Einstein… I’m not exaggerating! My first thought was, “if you can’t take care of yourself, how in the world can you take care of my daughter?” But, she is really nice and she seems to really want to do good for Lauren. She’s a people pleaser with her feelings on her sleeves. I can’t handle another high maintenance person in my life. What is wrong with me that I can’t just let this roll off my back? I know I can’t control everything.

I truly think this is the root of my problem. I feel out of control. I can’t control anything. I don’t want to control everything… or do I? Obviously, I do. Goodness! Those who know me well can attest to the fact, I am a bit of a control freak. I have even referred to myself as Lauren’s neurotic mother. However jokingly I may have said it in passing I really am.

It’s just she has been under my care for the past 8 years. I have painstakingly anticipated her every need. For crying out loud, she can’t tell me. So, I would think to myself… what would I want in this situation and then tailor it to a little girl. I’m grateful the Lord helped me be mindful for her sake. I couldn’t hear her voice… so someone had to, right? Wow, I just never saw this coming. I thought I was fine. I thought once she was in school I could step back into the roll of Amy. Nope! Not possible. Lauren has been my drug of choice. She has filled up my days so I wouldn’t have to think about what was wrong with me. I didn’t have time to think about it. Now I do. I don’t like what I see. I have prided myself in pretending like I had it together… oh Amy, who are you fooling? Only yourself…. only yourself!

So, please if you have personal contact with me… excuse my outspoken behavior. Please excuse an irritated glance at something you say that really wasn’t bad after all. I’ve got issues I’m working through and I’m learning how not to be this control freak mom of an autistic kid. Thanks in advance!

Consistent Connections

I believe it’s in the consistent little things we make a difference. As with anything in our lives we can build something with stick-to-itiveness. The same is with our kids. Whether on the spectrum or not. With consistency we can teach a myriad of things. But since I only have one child and she’s on the spectrum I can truthfully only speak from my experiences.

Let’s face it, there are days I’m tired. I just want to sleep in and not have to deal with the stresses of everyday life. Of course, I don’t have that luxury any longer. The days of staying up late and sleeping past 9 are in the distant past. My girl is awake with the first crack of light and she has NEVER taken a nap… NEVER! So for over 8 years we roll from the minute her feet hit the floor until it’s bedtime. So you can say, to be on my A game is vitally important everyday. But, I can’t honestly say I am. This is by far the hardest thing I’ve ever had to do. I thought I was prepared to be a parent… of a typical kid. But, one with autism? I have to believe God knew what He was doing. I have to draw from the truths I have been taught, He will never put more on me than I can bare.

Ok, so with this said… being consistent while teaching fundamentally basic concepts… uhm, let’s just say I’m not consistent! I wish I were super mom who could do it all. But, it’s a miracle some days she is clothed and fed. Most days I am in survival mode, running defense and putting out fires. She is one busy girl to say the least. I wish I could bottle that energy, I would make a fortune!

But, this morning it was good… I mean really good. We communicated. It may not have been about what she was going to wear or what she wanted for Christmas. But, we communicated meaningfully. From the moment I opened the door to her room to get her up for school we chatted. I asked her how she slept. She didn’t say anything. Then I said the magic words… “Let’s get up, we need to get ready for school.” Her first response was “In the car?” me- “Yup we are going to school in the car” From this moment on I thought I would take advantage of this situation and try to connect and it was good. We really connected. She even gave me a kiss, unwarranted. Maybe she was saying thank you for caring mommy to try to talk to me. I don’t know. But, it sure felt good!

Things are far from perfect. But, hopefully being consistent in trying to reach her just a little bit everyday will let her know I think she is worthwhile. I value you as a human being. You have importance. Even if she doesn’t communicate like everyone else… I made a connection. I’m going to do this again even if I don’t make a connection… I will stay consistent!

Comfort Food for My Soul

It has been over 2 years since we implemented the GF/CF diet. Several years ago, Lauren’s pediatrician had suggested we try it even before she was officially diagnosed with Autism. He treated a family with 5 children who all had autism. The mother had a hunch and thought she would try it just to see what happened.

The Dr. said if he hadn’t seen the results with his own eyes he would have never believed it. He had to wrap them in a sheet just to look in their ears and eyes. But, after the diet change they were able to sit still with not freaking out at all… to him this was a miracle. I would have to agree!

Unfortunately at that time it was too costly and there wasn’t much info on the internet so we declined. After a little while the subject came up again and this time we were in a place we could give it an honest try. I’m so glad we did. I can’t say it’s been a piece of cake… Ha! No pun intended! It has changed our lives in so many ways I would have never dreamed of.

Lauren was completely non-verbal until she was 6. Within 2 weeks of starting the diet she started talking. What a miracle. After more testing, we discovered she was allergic to many other foods. Since then she has made even more strides!

But, one of the things I have missed are comfort foods. Things as simple as Mac n Cheese. I can’t tell you how long it’s been since we’ve had mac n cheese in our house. I can hear the masses… “There is no way I could give up Mac n Cheese!” You would if it meant your child would say “Mommy” for the first time! You would learn to live without it if you knew it were in her better interest.

So, with that said… I have had a hankering for Tuna Noodle Casserole. You have no idea how long it’s been since I’ve had this. I know, it’s so simple… but really it’s not if you follow the classic recipe with the canned soup. Which is a no-no in our house! Anyways, this recipe turned out fabulous! I can’t believe how easy it was too! Ah-mazing!!

This is my first recipe I'm sharing with you all... so please have mercy on me. I'm a little on the nervous side...lol (nervous laughter) so enjoy!

Ingredients

• Olive oil
• 1 (8 ounce) package uncooked rice fettuccini noodle (I use A Taste of Thai noodles, yummy)
• 1/2 medium onion, finely chopped
• 1 stalk celery, finely chopped
• 1 clove garlic, minced
• 8 ounces button mushrooms, sliced
• 1/4 cup arrowroot powder
• 2 cups milk (I used unsweetened So Delicious Coconut Milk)
• salt, pepper and parsley to taste
• 2 (6 ounce) cans tuna, drained and flaked (beware of regular tuna in the can. It contains soybeans. I used Wild Planet Skip Jack Tuna…very nice)
• 1 cup frozen peas, thawed
• 3 tablespoons crunched Lay’s potato chips
• 1 cup shredded Cheddar cheese(or Daiya)

Directions

1. Preheat oven to 375 degrees F (190 degrees C). Be sure to use a glass baking dish so you won’t have to oil the bottom of your pan.
2. Bring a large pot of lightly salted water to a boil. Add rice noodles, follow directions on the side of the box.
3. Pour olive oil in a skillet, enough to give a light cover to the bottom, over medium-low heat. Stir in the onion, celery, and garlic, and cook 5 minutes, until tender. Increase heat to medium-high, and mix in mushrooms. Continue to cook and stir 5 minutes, or until most of the liquid has evaporated.
4. Remove mixture into a dish. In the same pan, put 1/4 olive oil in a medium saucepan, and whisk in flour until smooth. Gradually whisk in milk, and continue cooking 5 minutes, until sauce is smooth and slightly thickened. Season with salt, pepper and parsley. Stir in tuna, peas, mushroom mixture, and cooked noodles. Transfer to the baking dish. Crush potato chips over the casserole. Top with cheese (or Daiya).
5. Bake 25 minutes in the preheated oven, or until bubbly and lightly browned.

One thing I did for our family was I baked my daughter’s in a separate baking dish. This way she could have her own non-allergic cheese on top and we could have our cheese. It was a win/win.

It’s too heavy to carry…

I have recently considered pulling out one of my favorite books "Tramp for the Lord" by Corrie Ten Boom. If you know anything about me... she is my hero. I would have loved to have met her. To have sit with her and drink up her life experience and have her pour into me what she knew. But since she is no longer with us in this life, her books with have to do.

Going about my morning, I was thinking about a situation I have been dealing with. You know, I really thought I had dealt with this already. But, actually I only compartmentalized it. In mediating on the Lord and this circumstance I remembered something I read by Corrie Ten Boom. Just in case you haven't heard about her I will share a little bit about her. If you have, bear with me.

Her father was a watch maker and they lived in a town outside of Amsterdam. Every so often he would board a train, with a very large suitcase, for Amsterdam to get parts for his watches. Plus, there was an atomic clock in Amsterdam he would set his clocks by while he was in the city. One day when Corrie was about 9 years old, she road with her father to Amsterdam. The day before children at school was talking about something adult in nature and she didn't understand what they meant. She asked her father but he never responded to her queries. They proceeded about their morning and then boarded the train to return home. Her relationship with her father was such she would do whatever he would ask her to do without a question. So, when it came time for their stop he turned to her and asked her to grab the large suitcase. Knowing it was almost impossible for her to lift, she tried anyways. She told her father she couldn't. He said, "Correct! Some things are too heavy for you to carry and you must leave your father to carry them."

I am reminded of this story again today. There are some things that are too heavy for me to carry. I must allow my Father to carry them for me.

Casting all your care upon him; for he careth for you. I Peter 5:7

Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken. Psalms 55:22

It's the Great Pumpkin Amy!

Well, I did it! I finally gave in and carved a pumpkin. I was thinking back trying to remember the last time I tried this. Well, it has to be more than 14 years ago... at least.
Let me say, it's not as easy as I remembered. Just for the record, I'm not a big fan of Halloween. I don't dress up or dress up Lauren. I did when she was really little... she was a black and white kitty! She was adorable! I guess I have trouble reconciling my beliefs with the practice of the holiday. I don't do horror and Lauren can't eat candy...so why bother anyways, right?
But, for those of you who do like trick or treating...if you want to celebrate...celebrate away. Just don't expect me to join in.
Which brings me to my pumpkin. I wanted to celebrate the fall season with my daughter. I thought this could be something we could share together. Aside from sensory issues, she seemed to enjoy the process. Would I do it again? I don't know. We will see next year.

Ok for you who like my pumpkin, I downloaded a template from Birds and Bloom, taped it to the pumpkin and traced away. The hard part was not having the correct tools. Always, always, always have the right tool for the job!
Happy Pumpkins!

She likes me, she likes me not.

I grew up in a very sheltered home per se. We lived within this little bubble of family, school and church. I learned from a very young age when I was at school not everyone would like me or enjoyed my company. Then not too long afterwards I realized the same about certain family members. With each revelation the knowledge of this became harder to take. But, life goes on. The only thing was I never felt this way at church. I always felt that everyone liked me and I returned the sentiment. Now, I am not an egotist. We are all God’s children and as the scripture states, if you don’t love him who you have seen, how can you love Him who you haven’t? 

It wasn’t until I was in my teens a new family started attending our church. One of the daughters didn’t like me. I mean… she didn’t like me at all. She tolerated me and made it painfully aware how she felt. This of course was the end of the bubble I had lived in. I was shook to the core! Why didn’t she like me? I couldn’t wrap my brain around it. I always assumed because we shared the same belief we were the same and for some crazy reason would love each other regardless of our likes or dislikes. Wasn’t that how it was suppose to be?

But, again life would go on… I started working. I was already prepared and I lied to myself on a regular basis it didn’t matter what others thought of me… “I am my own person!” Whatever! I knew deep inside it bothered me. Sometimes, you just have to let things go and take the good with the bad and say who cares and really mean it!

I do feel like I have had a grip on not really caring if I were liked for many years. I knew they were missing out! I am a great person to hang out with and I am a very loyal friend. Then my daughter was born. Of course who would ever dislike a baby, right? But, as she grew and we came to grips with her differences. We started seeing the looks, the shunning, the apparent dislike for being around her. It started with strangers, then family members… now here we are the final frontier! The great part is, I’m not sure if she even notices the looks of those that don’t want to sit with her. The little ones that act afraid of her. I’m grateful for her being unaware! But, I see it! I see too much and again it’s like a dagger all over again. Just like when I came to the realization that girl couldn’t stand me. I know I can’t protect her from hurt. I know this is part of life. But, I think my problem has always been… we are God’s children and this ought not to be. I should be able to trust you and know you won’t hurt me. When the world is swirling around us, there should be a refuge we can come to. A place of shelter from the hurts of everyday life. The house of God should be this place! I want to be an extension of this belief. I think I have had this experience to help me be prepared for those who come to us bearing the weight of pain and cold indifference. I want to be holding the light as a beacon. I have decided it doesn’t matter to me if you like me or my family. It doesn’t matter to me if you want to be my friend or not. I’m going to love those who want to be loved, those who don’t and all those in between. I’m going to teach Lauren to be oblivious to what others think and judge herself by what God thinks and be accountable to His word and those who are in authority over her. In the end, we have to give an account and I pray I am able to make the Lord proud I finally passed this test.

To ABA or not to ABA that is the question...

My girl has completed her first full week back in school after spending the past 2 years in an ABA program. The first year (10 months )was in a center with 1:2 ratio... in layman's terms, 1 teacher to 2 students. Then one full year of a combination of ABA and Natural Environment Training in an in home program. In Ohio we are blessed to have the Autism Scholarship. So when the public school systems are not equipped to teach your autistic child you can apply for the scholarship and use it instead of public schools. This is to ensure your child is being reached in the best way possible.

I will have to say, I am glad we didn't start "drill and kill" ABA with her too soon. I have heard how this increases some aggressive behavior. Mainly due to frustration. If I had to do it over again...I would have foregone the center approach and did two years in-home ABA. Each child is different... you need to listen to what they aren't saying. You really need to learn to be a detective with our kids. Since they aren't able to say what you need to know, you need to look for clues. It isn't easy that's for sure!

Recently what caused me to think of ABA began with a letter I received from a Dr. The letter helped me realize I did do the right thing by my daughter. This Dr specializes in developmental pediatrics. Her expertise is with autistic kids. So, for some reason I had this assumption she was an expert in the field. Why do I elevate my expectations of certain types of people? Ok another blog for another day!!

In this letter she was going over her findings from our appointment. Something she said sent up this read flag. Well, actually there was something she said in our meeting that got those wheels in my brain a turnin. She said two years of ABA was completely enough time to devote to ABA therapy. Then when I read her comment in the letter I again was seeing another red flag! She said the ABA therapy hadn't really made a difference in my child. Uhm?? How can you say this? You don't even know my daughter. You have seen her for only a few short minutes. You are seeing a snapshot of my autistic child in a new place, who was hungry and bored out of her mind... and you are going to judge her on that visit? Whatever!

My thoughts are this... ABA is a lifestyle. It's not always straight drill and kill sessions. It's coupled with Natural Environment Training with helping them find their way at their pace. I don't think she would be where she is if it weren't for caring people listening to what she couldn't say and reading her body language.

When I first started to research ABA from a parent's perspective I really didn't find too many things on the Internet. I think it's missing. Like how to set up a therapy room in your house. How to look for tutors. IEP's and assessments. I will try to share what I know. What has worked and what hasn't.

In my personal experience, I say yes to ABA! I'll take the good, the bad and the ugly of it all. To hear my daughter say I love you and point to an airplane in the sky! It has changed out lives for the better!