Frustration Abounds

Update here....

We will be returning to the Center for Courageous Kids in November for the Fall autism weekend family retreat. We are very excited to have the opportunity to attend again and really looking forward to it.

Samantha has hit a snag at school this week with her behaviors. She has started tantruming, and on Monday threw a rocking chair during a fit. Her teacher is so very sweet, but obviously frustrated by this behavior and unsure of how to deal with it. To be honest, I have to call on Sam's ABA for advice on what to tell the teacher. She has seen Sam in a school setting way more than I have and really has been the source of my answers on how to handle these things at home.

Samantha is in a class of 9 and is the only little girl. I don't know if that has anything to do with all of this or not. She also was ill last week and did not get ABA therapy all week. The disruption in her routine may play a part. I just don't know. It's tough enough to find solutions to the problems you can identify, but to find solutions to a problem you can't...that's dang near impossible!

Guess I'll have to really do some thinking on this one.

Thank You, Lord!

I got a call today from Samantha's vice principal. She informed me that they WOULD allow Sam's ABA to come in daily during nap time and work with Samantha in a separate room. They however, did not feel that if the ABA was going to be there daily that they needed to write in the IEP that she would be in for monthly observations. Fine by me! We got the victory we were praying for and didn't have to engage the district directly for it.

Finally I feel like I can sigh a little bit of relief. I will just be happy when the IEP is finally signed and in effect. While I feel much better I am still not fully relaxed yet. Either way, today was a good day with really really good news!

Feeling the Burn-out of My Patience Coming On...

I am still in the back and forth stage of Samantha's IEP. The school uses this ridiculous computer program to write goals and IEPs. The way they are written is completely insane. For example: "Samantha will increase her expressive vocabulary by 50 words." Now just how on earth are they going to measure that??? It's not like they have a current list of her vocabulary, or 50 set words she will learn over the next year. Under every single goal for method of evaluation it says "Teacher Observation." That's all well and good, but what happens if the teacher leaves or we move. There is nothing documented or any notable data collected! The list of absurdities goes on and on for 7 pages.

For services Sam is getting 15 min 3 times a week of small group speech therapy, which based on what the SLP told me, focuses more on concepts than it does speech or language. When I inquired about 1:1 sessions, I was informed that the SLP is working both this school and the middle school and since Sam gets private therapy she will be fine. What the hell? How is their lack of staffing my problem?

I never did get anything from the district Special Ed. director regarding the "policy" about in-class observation. Now I am waiting to hear from her about Sam's ABA being allowed to offer service from 1-2pm while the rest of the class naps since not once has Samantha actually napped at school. I have little faith that I will hear anything back anytime soon. I feel like they have the attitude of just ignore this mom and she'll go away.....little do they know the longer they put me off the more pissed off I am getting.

Ok, I'm getting all worked up again and really want to cool off before going to bed. I'll update this more later, when I'm less likely to say something really offensive.

So proud of Sam!

Where Did the Summer Go?

It seems like just yesterday we were celebrating Samantha's 3rd birthday, and today I wake up to realize we are in the last full week of August! Where does the time go?

Samantha has started the public school special needs pre-K program here in town. She has taken to riding the bus very well and really loves going to school. Her teacher is young and new, but very promising. I am in the process of preparing for an IEP meeting that will review and revise Sam's current IEP. This is a whole new world to me and the politics of it all nauseates me! I have already had the director of the special education department lie to me about "district policy" and then not followed through on something she said she would do. So honestly, her credibility with me is shot. I am doing as all the books, seminars, and training has taught me and documenting everything. I am following the "rules" and requesting things in writing, and keeping good records. I'd just like to get through this will as little mayhem as possible.

I have a great group behind me keeping me grounded and giving me the big picture. I know there are going to be things I want to happen that are unrealistic, and then things I didn't think of that need to take place. It really does take a village...huh?

So summer is ending and we are moving along just fine. Sam has made amazing strides with her ABA and speech sessions. She now says, "I want a (insert item) please." and is articulating words much better. Her "meltdowns" have nearly ceased all together. It is wonderful to see her blossom! Today she drank from an open cup and we had a huge celebration! Her ABA is great at challenging not just Samantha, but me too. I love her for that!

So here's to a good school year, and even more progress!

Gearing Up For the Next Step...

In just a couple of weeks Samantha will begin a new chapter in her journey....pre-school! We have begun speech on Fridays at Vanderbilt, got in the groove with a new ABA team, and are making calls to begin OT soon. So much going on, yet so much improvement being seen. I cannot wait to see how attending pre-school factors into the whole scheme of things. I hate the thought of saying goodbye to Ms. Tara as Sam loves her so much, but I know her hard work will continue to show in Sam's progress.

This summer has been non-stop activities and it seems to have flown by at the speed of light. We have had days filled with fun and lots of family time. Samantha has developed friendships and loves to swim at Ms. Aggie's. I am still reading the stack of books on my desk and slowly making it through one book at a time. Really, just taking it day by day.

Changing Our Stratgey

Samantha began ABA with a different provider last week and I am very pleased with the structure of the sessions. Her last ABA was wonderful, however, I really felt Samantha needed more challenging. She has welcomed the new provider into her world and I think for us this will be a good fit. I am learning that every kid learns differently and I have to be aware of the ways that Sam can learn with the most success.

The new provider's methods are very different from what I have been doing with Sam during her meltdowns, and while they are very hard to adhere to, they are working! It is no doubt much harder on me as the mother to stick with them. However, I know that I have to keep my eyes on the prize and not focus on the current desire to appease.

Sam's great grandpa passed this weekend and while I know she will have no memory of him, I am glad we went to visit him not too long ago. Spending that time together was very important and I am thankful we had that.

Sam's great aunt was also here this last week and Sam had a blast! Some of my favorite memories are my times with Aunt J. and I know Sam's will be too. They played, read stories, laughed, cuddled, and just generally had a good time together. It was nice to have her here to witness 1st hand what we are talking about in these blogs and our emails. She was very supportive, sympathetic, and reassuring about it all. We hope she comes back soon!

Disconnected Day

I can usually tell within the first 45 seconds of Samantha being awake what kind of day we are going to have. If she's chattering and asking for something to eat, odds are we are going to be able to conquer anything we have to do that day. However, if she is playing "mindlessly" in her room and not asking for anything, I can bet we are going to have a "disconnected day." These are the days where it seems as though someone has cut the connection between reality and communication. Sam spends most of these days reciting Backyardigans episodes she has not seen in months, phone conversations she overheard a week ago, and our nightly bedtime routine. She struggles to make her needs and wants known with words and is at her most inflexible.

This morning was one such morning. The dog didn't come inside at the moment Sam felt she should and we had a screaming fit on our hands. She spent breakfast reciting something I still can't figure out. She asked for grapes then bit into each one, made a face, and spit each one out. (Any other day she loves grapes.) Yesterday if she wanted to color or play with Play Doh she came up and asked for them. Today she ran though the house crying holding her aqua doodle pen up as if she knew what she wanted but had no idea how to ask for it. Once Matt filled the pen with water for her, rather than the usual "bank you" of appreciation, he got a tearful "sorry, daddy."

It is so strange how even though Sam is totally disconnected, she's totally aware of it at the same time. She knows when it is harder for us to understand her and meet her needs. You can see and hear the frustration coming from her. Meanwhile, my blood pressure rises and my patience wears very thin.

I finally got her developmental pediatrician to put in a referral for an MRI. I know the odds of finding some random brain tumor that could be removed and fix all her issues is one in about a billion, but I need to know that we are approaching things from the right angle and that there is not a hidden problem we are unaware of. So here's to the rest of our day, and hoping we find the connection again.

Lions, Tigers, and Bears...OH MY!

Yesterday we loaded up the car and made the hour drive down to the Nashville zoo. As we chatted in the car and giggled about the fun we hoped to have, the back of my mind was reeling about our last trip to this zoo. It was one year ago, almost to the day, and Samantha spent the entire time screaming and crying at the top of her lungs. She wouldn't stay on the little path, was too hot, wanted to run away and generally made the trip miserable. Hopes were high for this year. Daddy was joining us this time and we had spent several hours the night before discussing tigers, fish, monkeys, and all the fun it would be to see these animals. So here we were...on our way.

The cloud cover took us from a blistering hot, sun beat day to a warm, shady morning that was quite pleasant. Samantha was instantly taken in by all there was to see and do. She held our hands and pulled us from one exhibit to the next pointing at the different animals and showing excitement. She loved the frogs in the reptile/amphibian house, and the red panda that came right up to her. She didn't understand why she could not ride the goats at the petting zoo area, but moved on quickly without major fuss. My favorite part was the sound she made trying to imitate an elephant. She had several of us standing around there laughing! She's quite good!

After three and a half hours of walking and playing we loaded up to head home. The trip was a success! I don't know if it was her age, the difference in time, or just that we hit it on a "good day." Whatever it was, I am thankful for it. It was a wonderful day with family and I can't wait to do it again!

The Days Where You Just Want to Say,"To Hell With it ALL!"

Today was one of those days where every ounce of myself struggled to cope with what was before me. I had enrolled Samantha in what I felt was the best swimming lesson program in town. The program is at a facility I worked at for many years and did not leave on the best of terms from. I overcame my own issue of going back, and pushed on for the benefit of my child.

Upon our arrival Sam and I went to the locker room and changed her into her swimming suit. There were 4 kids in the class and immediately Samantha stood out like a "bad apple." She instantly wanted to get in the water, didn't understand the reason behind lining up with the other kids on the edge of the pool, and had no concept of the controlled breathing they were learning. She began to scream, splash, and generally draw the attention of everyone within ear shot. By the way, the echo of an indoor pool is deafening! I tried my best to calm her and not make eye contact with my former employer and every other parent who had come to see what all the fuss was about. The lifeguard, obviously annoyed, tried to tell Samantha that she needed to do like the other kids and sit on the step. Yeah right, lady!

Finally 12 minutes into the lesson I grabbed Sam, threw a sun dress over her dripping body and walked out the door. I cried all the way home and cussed at the fact that I just wanted for once to have a "normal" kid that could function in society without a big dramatic scene! I couldn't help it, for the 1st time ever I actually blamed Sam for all of this. I know it's ludicrous that she would be to blame, but damn it, I was pissed. I make no apologies for that. I have every right to be angry that this is our situation. We didn't ask for this and it's a day to day struggle to just survive it sometimes, let alone thrive beyond it.

We came home and shut ourselves back into our cocoon of a comfort zone. Apparently this vail of isolation has become a sense of protection for us both in a way. Some days are just harder than others and today was one of the tough ones. On to tomorrow and whatever it holds in store.

It's Official...Sam's 3!!!

Thank You!

Home again...and ready to roll!

So I am home again, and have experienced more in the last 5 days regarding Autism and the specturm than I ever thought possible! I have so much to process and think about that it is a bit overwhelming. Like I told the hubby last night....it's like having all the information and still no clear answer yet. I was blessed to meet some of the front runners in this movement to recover our children from autism. I met AMAZING kids with Asperger's, autism, OCD, Bi-Polar disorder, both verbal and non-verbal! They are just beyond any words worthy of description. "Inspirational" even seems too subtle. If you are fortunate enough to have a child on the spectrum, or love a child on the spectrum, or work with a child on the spectrum.....appreciate it! These kids have so much to offer this world and they should not be viewed as brats, outcasts, difficult chores, broken, or disabled. They are more able than most of us will ever be!

Over the next several weeks I am going to be adding a lot of new books to my reading and resources section at the bottom of the blog. These are books from the conference I bought after hearing the authors speak. They are books I believe in and will read myself. So keep an eye on that section. Also, if you want any of the information or power point presentations from the conference, I have ALL of those as well. Next year I plan to return, and I hope you will join me!

Live from the Windy City......

Here I am in Chicago. A reality I am still trying to grasp. This started as a bit of pipe dream and now I sit in the midst of such an amazing event that I am still in awe of and overwhelmed by. It is so inspiring to see parents, educators, and physicians come together for a common good. No boundaries, no judgments, no glorified egos. I am in the middle of a group of people who just want to help those they love. They might be children, grandchildren, friends, patients, students, or a total stranger they have yet to meet. It does not matter. All that matters is that whoever it is will benefit from the knowledge provided here. I love that I can stand next to a doctor and give my story and opinion and it carries just as much weight. The faces and voices here have given me that kick in the butt to keep moving forward. I have only just begun my journey, but I have a wonderful army of trailblazers in front of me lighting the path.

I meet a most generous woman tonight who took her son’s story and turned it into a business that’s sole purpose is to help others. She was insightful, encouraging, and an inspiration. I have added her link to the reading and resources section at the bottom of this page…..please check it out! www.watchmelearn.com After talking to her for a while about my background in, and ideas for, marketing, she actually offered me a job when I am ready to go back to work!!! It’s something to think about for sure.

I am just so thankful to be here and able to take advantage of all that is offered here. I have been reassured that we are on the right path with Sam and are doing our best to help her.
So, thank you to those who supported me getting here. I will be forever grateful for all of you. Whether your contribution was financial, being available for Matt and Sam while I am gone, or just in prayers and support. You have made this happen for me and I am indebted to you.

Reaching Out and Reaching Others

My little blog here was started for 2 reasons. The 1st being self therapy and a place to put my thoughts and feelings. The 2nd was so family and friends who live far away could keep up on what was going on with Sam. I have recently found though that my blog has taken on a 3rd, and maybe most important, role of information sharing. I have passed on the link to those I feel I trust with this information and personal story here. I encourage others to share the site with anyone they think might benefit from it. My intention was not to have my laundry aired, but just to share my story with others in the same situation. Lately, I am finding that the story and information I have provided here are helping people more than I ever thought! I am thankful to be able to be a source of information and maybe encouragement for someone else in this situation. None of us asked for this particular ride, but we are all in it together.

Geared Up and Ready to GO!

I spent the better part of today preparing for my trip to the Autism One conference in Chicago this coming week. I printed off flight times, hotel confirmations and lecture schedules. There is a wealth of information at this 4 day event and I want to soak up all I can. I think I have pretty much got my days full and will hopefully be able to retain it all long term. I am excited, anxious, nervous, and overwhelmed all at the same time.

Lately, the days seem to be flying past me faster than I even notice. I am on the edge of my trip, and upon my return we will be just 7 days from Sam's 3rd birthday! I still cannot believe my little gal is going to be 3 years old. She's growing so fast and this past year was such a tough one for her and our family as a whole. I can't wait to see her face when we have her party and I hope she has a blast!

We decided that before she starts school this fall we are going to make another trip to the Chattanooga Aquarium and spend a weekend in the Smokies. She loves fish and watching her little aquarium here at home. We have not been to the aquarium in almost 2 years now and I know she will really love it. School here is almost out and we have lots of fun day trips planned with friends to the zoo, discovery center, and adventure science center. It ought to be a great summer. Even if we stay right here at home, we will have our new pool to hang out in!

Last Friday we met Sam's 2nd ABA therapist, Ms. Tonya, and she is an awesome lady. I can't wait to see how Sam benefits from her being a part of our days, and I know she will have fun with Sam too!

So much going on, and not one extra minute to stop and catch my breath. Ain't that how life goes?

Rainy Return Home and Reflecting

We are now home again from our trip to KS, and trying to get back to the structure we had set here. Sam has done very well with the transition and aside from some minor sleeping issues, is back to the game plan again. To be honest, it was nice not having to worry about appointments This morning Sam rejoined Tara for EI and we will start ABA again hopefully by the end of the week. Driving out here this morning I was reflecting on this past year and thinking about Sam's quickly approaching birthday.

Just one year ago we were just finding out that Sam is in fact not hearing impaired. Hearing aids would not be needed and high hopes for normal speech development hanged in the balance. While we have been on quite a ride since then, we have come very far and made great strides. I am more educated now about my own child than I ever thought possible. I know there is still a lot more for me to learn and I am geared up for doing that. In just a few days I will be on my way to Chicago for the Autism One conference, and I cannot wait to gather all the information possible there. I wonder what the next year will hold for my little girl. I hope that she will continue to excel and learn. I hope she develops more abilities to help her communicate and interact with others. She has already proven herself a fighter and beater of odds, so I have no doubt she will continue to inspire me and amaze me.

IEP and Long Drive

Well we had Sam's very 1st IEP meeting on Monday and in my opinion it was a great start. I got very good vibes from her teacher and the whole meeting was very well done. I took Sam's ABA therapist, EI, and Godmother with me. They all had wonderful insight and questions. I was so glad to have them there for input and support. We will look at the set goals again before school starts next Fall and make sure they are still relevant. Until then, she will continue EI services for the summer with Tara!

We are currently in Kansas visiting family. Sam's loving life with Grandpa and his new drum set! She's thinks he's just pretty darn cool letting her play his drums. We will be here several days and I hope to get a chance to see those we love so much while here. Sam is adjusting well to a new environment and is glad the long drive is over.

A Glimmer of Hope and Trying Something New

This morning my mom in law called and told me there was a segment on the Today show coming on about a child who recovered from autism. I turned it on in time to hear of a 13 year old boy whose story was identical to Sam's. He developed normally up until about 12-18 months then showed signs of regression. He was initially diagnosed as hearing impaired, then found to have normal hearing. Eventually he was diagnosed with high functioning autism. All of the therapies and services he received are the exact same that we are doing for Samantha. Now at 13 years old he is without an autism diagnosis and a fully functioning kid! While I understand that this is only one story out of thousands and thousands, it does give me hope. It reassures me that I am doing the right thing with the early intervention, speech, ABA etc. We can only pray to be so lucky when Sam is 13 years old. If she's not, it sure won't be for a lack of trying. I'm so glad to have been given the chance to see this.

We also, after hearing of good success from others, have taken Sam off of cow's milk. She is strictly on rice milk, water and juice. I have read many accounts and heard personally of two parents having great success with an improvement in their child's behavior once taken off the cow's milk. Even without cutting all dairy out it's shown to be good. So we are going to try it and see how it goes. Sam loves the rice milk, and to be honest...so do I!

Being Sam's Best Friend

Every morning Sam comes into my room and we spend time together watching Noggin, snuggling, laughing, and just enjoying the time. I love that she has developed to an interactive point where she also loves this daily tradition. Her humor is really showing as well. I know to really soak up these moments when I am still her very best friend in the world. Soon enough she'll be off to school and no doubt mommy's signifigance will be scaled back. I look forward to her reaching that point, but I really love this part too!

Her signing has hit a surge and she is really advancing well with her ASL vocabulary. It's fun to "quiz" daddy and see if he knows as much as she does. He's keeping pace with her but she always stumps him on at least one. It's quite fun to watch.

Sam and Danny (the horse)

Home From Camp!

Well, we are home from camp...and worn out! This weekend was so much fun for Samantha and for us as a family. We got to see Sam experience so much and take joy in her excitement. We arrived Friday afternoon and checked into our lodge. The rooms had bunk beds and Sam had a blast going from bed to bed (6 in all) trying them each out. Figures, she ended up sleeping with me the 1st night. We got to meet our designated councilor, Rachel, and she was so nice. She spent the weekend with us during different activities. She's also a lifeguard at the camp. We had dinner and explored the camp before turning in for the night.

Saturday morning we hit the ground running. After breakfast we headed to the stables and Samantha got to ride a horse. She loved it! I was really nervous that she would change her mind about it once up close and ready to saddle up. She took off and left mommy and daddy in the dust! Matt and I marveled at how independent she was about it all.

After horses we went and did some arts and crafts, bowling, swimming, lunch, nap, egg hunt, dinner, more swimming, and movie time. The events were structured yet we were able to choose our activity during set hours. It was nice to have the freedom to choose, and the ability to give Sam the choice.

Sunday we met up for breakfast and then went back over to the arts and crafts center. Sam jammed on the drums a bit and ran about playing. Then it was time for the closing slide show and to say good bye.

All in all it was an amazing weekend! We met other parents from all over who were full of insight and information. It was great to have the quiet understanding among all of us when one of our little ones got over stimulated or rowdy. There were no looks of annoyance, or embarrassment. There was just compassion, fun, and new friends! We'll be going back for sure!

Interesting Opinion

EFMP Breakfast

Looking Forward...With Optimisim

So I have calmed down after the whole doctor visit on Friday. I called that afternoon and changed Sam's primary care manager. It felt good to take charge of the situation and have control of the outcome. I also got a list of the civilian peds in town with openings and will start looking into moving her basic care off of the installation. I called her EFMP doctor and spent over an hour visiting with him about the whole vaccines -vs- no vaccines debate. I am so glad I have done my homework as it gave me the ability to really discuss things with him on a level where we both got something out of it. Regardless if Sam starts to see a civilian PCM, her developmental peds doctor will remain the same.

Saturday we went to the EFMP (Exceptional Family Member Program) breakfast and egg hunt. Sam had a decent time, and was excited to break open her 4 little eggs at home and find candy in them. The Easter bunny has been preparing a basket to deliver and I cannot wait to see her face when she gets up on Easter morning.

It's been a quiet weekend at home. Next weekend we will head to Kentucky for our family retreat. It will be nice to get out of town and away from the norm for a while. It's been gloomy and rainy here and I am hoping for some sunshine while at the camp next week.

Apparently Medical Degress Come in Cracker Jack Boxes!

This morning Sam was scheduled to see her primary care manager for a yearly physical to make sure she is alright to participate in a variety of activities offered on the installation. They have a day camp this summer, soccer programs, and other activities for kids to participate in. I have to honestly say I was irate, and yet not at all shocked, that her "doctor" came in and spent all of 8 seconds listening to her heart and signed off on the form! He didn't bother to listen to her lungs, ask about motor skills, speech development, vision, eating habits, sleeping pattern, NOTHING! It clearly states in her records that she sees an ENT yearly for excessive wax in her ears....he didn't even bother to check her ears to see if there was a build up at this time. What the hell is this guy getting paid for!?!? It's no wonder kids go undiagnosed for 1/2 the stuff out there! Not to sound rude, but my VET spends more time looking at my DOG than this "doctor" did checking my CHILD who has a developmental delay. This is an ongoing standard of protocol at this particular facility and I have about had it! When I asked about vaccination exemption I was informed that there is NO correlation between ASD and vaccines and that he would NOT sign a request for exemption for the school system to have on file. Never mind that it is our RIGHT by law to ask for this! UGH! The whole experience left me angry and reassured of just how ignorant our medical system is sometimes.

Chicago...Here I Come!

Thanks to the extreme generosity of a few family members, and smart saving on our part, my ambition to go to the Autism One conference in Chicago this May is now a reality. My registration is paid, hotel room booked, and flight scheduled! I am SO excited, to say the least. Jenny McCarthy is the key note speaker this year and the schedule of lectures looks amazing! I can only imagine to wealth of knowledge I will get while there. I signed up for the mentor program so I will be paired up with someone who is more experienced with all of this. I also signed up for the Friday night Spa Night. No doubt, something I desperately need...relaxation. I have been reading everything I can about biomedical treatments and will for sure be approaching Sam's doctor about different tests and screenings once I return from the conference. This time the requests will be for areas more physical/medical than behavioral/neurological.

We scheduled Sam's 1st IEP meeting for April 20th, and her teacher seems very nice. Samantha will be attending a brand new grade school here in town. Her teacher was very excited about the new school and the great tools that will come with the move. Matt and I are pleased that this rezoning has put us in a better district. Now I just have to get my ducks in a row before this meeting.

Andre put together a Functional Behavior Analysis based on his visits over the last several weeks. There are areas where he sees Samantha is quite advanced (music, coloring, fine motor skills) and areas that clearly need adjustment. He's remains positive and helps keep Matt and myself positive about the process. If nothing else we are much more aware of stimuli and reinforcers than ever before!

Mother Warrior...Do I Have What it Takes?

I started reading Jenny McCarthy's most recent book Mother Warriors yesterday and am about 1/2 way through it. I have to say I am in total awe of the women in this book! I have heard of moving mountains to get your child help, but these women literally wrote the book on kicking ass and taking names! They don't take "no" for an answer and know what they are talking about from their own drive to self educate. They didn't wait for someone to find a solution or hand them a game plan. They read, and read, and read, and researched, and tried, and traveled, and gave every bit of their being to finding a way to help their child. They formed networks of thousands from their own living rooms and will change the way the world views autism. While inspiring and motivating, it is also is like standing next to the ocean for the 1st time...massive, larger than life, and overwhelming. I can only imagine what I will see one day with I look back on my own journey, I only hope I have worked hard enough for my child to be a Mother Warrior to her, if to no one else.

Learning to Row the Boat

Expanding on our ABA therapist's philosophy of "We need to learn to row the boat, not rock it."

I really have given this a lot of thought as the statement has stuck in my mind and resonated there for a couple of weeks now. What exactly does that mean, and how does it apply in our situation? Learning the basics of rowing a boat is not at all hard. It is a simple, repetitive, balanced motion that while it takes strength and consistency, does not take any advanced technique. However, what if there is a cross current? What if the wind is against you? What if you are caught in a squall and ready to capsize all together? If you continue you row the boat as you always have with the same simple, repetitive, balanced motion....would your boat (and you) survive and reach the desired destination? I'm guessing... probably not.

So why would I think that the traditional techniques of parenting would work when clearly there are "environmental influences" that are causing me to learn how to row the boat in a way that is specific to my given circumstance? To assume that the basics are going to get me to the other side is just arrogant and naive. That is where Sam's ABA therapy comes in. That is what Andre meant by learning to row the boat. I have to look at my own situation and how it changes, just like the weather, and adapt my technique to compensate accordingly.

It's a challenge for sure and takes much more strength than the simple motion and technique I have witnessed in others' parenting and was even raised with by my own parents. To some I am sure it will seem unconventional, and even ridiculous. However, when I see the effects of it in my child and the positive change in our interactions, I cannot help to throw my back into it and give it all my might.

Word Repetition, Call for Concern?

Lately I have noticed that Samantha repeats words or phrases at random times, over and over and over. This morning while in the car on the way to EI, she started saying "no chips, no chips, no chips, no chips..." Very clear and very deliberate in her words, yet seemed to be almost in another time mentally. I recalled that yesterday afternoon she had asked for some chips as a snack. We were getting ready to go out to eat so I had told her "No, no chips." At the time she screamed and stormed out of the kitchen. Now today she seemed to be reassuring herself that she did in fact understand what she had been told. Then as we rounded the corner to the center, her phrase changed to, "Bye bye, Aggie. Bye, Aggie. Bye bye, Aggie. Bye, Aggie." My friend's name is Aggie and Sam spends a lot of time at her house and with her in general. I had not mentioned Aggie this morning or even talked to her on the phone.

My concern is that my almost 3 year old didn't say anything about it being rainy today, or that she was happy/sad/tired. She never tells me she loves me (without prompt) or that she doesn't like green beans. She will wander the house repeating phone converstaions she's overheard, or something on TV she has heard. Yet here we are with her repeating over and over..."no chips."

When I Need a Reminder of Why I Do All This...

Feelin' Good All Around

Today we went to Vanderbilt and met with our referred neurologist. After spending time with us and getting a thorough background on Sam, she concluded that there was no sign of "silent seizures" and that a sleep study was not necessary at this time. YAY! She did ask us to start a sleep diary of the times and lengths Sam sleeps over the next several weeks. She prescribed a supplement of melatonin to start after the 1st week of diary recordings. I picked up some tonight and will have it ready to begin next week. This was a great appointment in addition as we were asked to partake in an upcoming sleep study on kids with ASD (perfect timing!). Sam will be given a "watch" to wear that will monitor when she is awake and when she is asleep. It will give us a very clear picture of her sleep patterns, and maybe a few clues as to why they are not consistent. We submitted our information to the lady in charge of the study and will wait to hear more about when it will begin.

Hubby has been home from work with us all day, and I have to say, is making great strides in handling all of this with Sam. He has really stepped things up a notch and jumped in full force. I am so thankful to have him here. He's the balance I need when I am feeling weak, and the grounding I need when I am ready to give up. He handles Sam totally different and in many ways, better than I do. She responds well to him and his involvement. We are both blessed to have him on board. So many relationships take a hit when something of this nature presents itself, and ours has struggled a little. However, I am very confident that we are in it to win it, and on the same team.

Also, thanks to a most generous soul (I won't name names for anonymity reasons), I am half way to my goal for the upcoming conference in Chicago! I cannot even begin to express how grateful and excited I am that this is materializing into a reality. So thank you, you know who you are, for your most caring gift and the encouragement to strive to further my education in whatever means I am able.

Big Hopes for an Opportunity

There is a big Autism conference coming up in May in Chicago. I am really really wanting to go and take advantage of all there is to learn from the experience. I know that there is a bit of a discount for military, but am asking anyone who would like to assist me in getting to this conference to please contact me. I'm sure I'll have to take Sam with me as Matt's chances of getting leave are quite slim. So I would have to utilize the childcare they offer as well. I am setting a goal of $500 in donations between now and April 15th to cover the cost of the trip and event. If you would like to donate please let me know asap. For more information on the conference check out:

http://www.autismone.org/?goto=chicago&page=register

If you would like to join me for this....I'd love to have you along!

New Link

Check out the new link at the bottom of the page for Autism One Radio.

We're Going to Camp!

Today I received our letter of acceptance for the Center for Courageous Kids (see resources at bottom of page) Autism Weekend Family Retreat! So in April we will all go to Kentucky for 3 days of fun! We will get to meet lots of other kids on the spectrum and their families. We stay in lodges and there are a lot of activities planned like horse back riding, singing, arts and crafts, etc. I am so excited to have this opportunity with Sam and for the chance to get to know other parents "in the same boat."

Putting the Pieces Together

When I started researching Autism, I noticed that all of the clip art and organization logos had puzzle pieces. I didn't really understand why until just very recently. Today while visiting with Sam's ABA therapist, Andre, I realized that what we are doing with all of these services is trying to put together the pieces of the puzzle that is Samantha. We are trying to figure out how to fit things together in order to better understand her, and to help her better understand the world around her. We are taking every behavior she has and every ability she shows and putting them together to see the big picture. Ahhhh, now I get the puzzle pieces!

Big break through today was when Sam came in with her shoes in hand. When I asked what she wanted she replied, "Outside and play?" I was thrilled to have her, for the second or third time now, put her request in more than just one single word. Andre was here and we offered to take her to the park. She didn't want to go to the park but let us know she wanted to play out back. Baby steps, baby steps....Also at EI today while on the playground, Sam was on the slide and another child was in front of her. The other child was blocking the path down the slide and she placed her hand on this child's back and said, "Go." We are really seeing some good improvements in her letting her needs and desires known.

We are looking at ABA therapy being possibly 4 days a week. While this seems a bit overwhelming, I have read that it is quite normal and very beneficial. The hard part for me is to just go on with my day as normal and not be overly distracted by the "shadow" of the therapist. I feel my and Sam's days are very mundane and I'm not used to anyone else following around day to day until after hubby gets off work. Maybe if I pretend I am a celebrity it won't seem so odd...LOL

Sleeping is still an issue and hopefully we will get some more clues on how to handle that this Friday when we go visit Vandy for a sleep consult. Samantha still will not nap, and yet is SO tired by 2:00 in the afternoon. Her night time sleep is not regular even though her bedtime and bedtime routine remains very regular. Vanderbilt has proven to be a great resource in the past, I'm sure they won't fail to deliver some insight this time either. Wish us luck!

Ahhh, Moments of Weakness....

Last night was the 1st night in the last 5 that Samantha has slept all the way through the night. I, on the other hand, laid awake most of the night with random songs running though my head worried she would wake up and I would not hear her. Matt is in the mode of "let her cry it out" (which I have to admit usually works) but I still want to at least check in on her to make sure there's not some random bodily fluid everywhere, or a huge monster trying to devour her from under the bed. I know, unrealistic, but I'm a mother. I plan for EVERYTHING!

This morning Sam woke up and got mad because the dog didn't feel like playing with her. Then freaked out when I went to comb her hair. She started to head down the hall, no doubt to trash her room, and I jumped in to distract her. I got her dressed and asked what she wanted for breakfast. Usually I hear "cheese, bread, or pop tart." This morning though the answer was clear...."One cookie?" I informed her that was not an option, and BOOM! The fit began. After only about 45 minutes of good sleep and not yet a cup of coffee, I caved. (Collective sigh and head shake, everyone.) I know, I know. I just was not in the mood, and she knew it. I needed to get her out the door and off to EI. So my, got it all together, mother of the year, award sat tarnished as my kid ate a Girl Scout provided Do-Si-Do for breakfast. Still got that number to C.P.S.? LOL!

Weighted Blanket....On it's way!

So after a lot of time on the phone, tons of research online, and crunching numbers in the bank book....we finally have made an order for a weighted blanket for Sam. I looked into grants, and called about blanket exchange programs, and after all of that decided purchasing our own was the right choice for us. We got to pick the color from about 40 choices and made sure to get one large enough to cover Sam's twin bed. I read about poly pellets -vs- natural fillers and weight recommendations. We went through a company called Dream Catcher Weighted Blankets. Hopefully here in the next week or two our order will arrive and we will have the tool we need to help Sam sleep better.

Our initial evaluation and interview for ABA was today and I really liked the guy that will be coming out to work with us. He'll return on Monday and we will get more of an idea of how many hours we will have an ABA therapist here each week. Tomorrow is family day at home, and weather permitting...a trip to the park!

We Have Results!

Good news came today in the form of a call from our Developmental Peds Dr. Samantha's blood work came back and her nutritional levels are good, her chromosome tests are normal (showing no precursors for Rhett's syndrome), and the ONLY thing he saw as a concern was her iron level. Normal is 30-40, anemic is 10, Sam was at 22. Not terrible, but not where we need it. Iron levels have been directly correlated to speech development in children her age. So now we are going to add a multi-vitamin with minerals to our daily routine. YAY! Easy solution to something that could have been much larger.

We are going to see the sleep clinic neurologist at Vanderbilt in a week to talk over a sleep study and possible MRI. I am currently in the market for a weighted blanket that was recommended to help her sleep. It can also be used to help with her tantrums. The only down side is they run about $125 and of course insurance does not cover them. Oh well, sometimes you just have to bite the bullet and do what needs to be done for your little one.

Tomorrow we have our in home evaluation for ABA...can't wait to see how this will help her! I'm really excited!

Another Clip Art That Sometimes Applies

Turning My Attention

As May quickly approaches and we prepare to write Sam's 1st IEP with the school system, my attention and reading has shifted from what Autism is and how to cope to what our rights are and how to play an active roll in my child's IEP and education. It is insane how many laws and regulations there are; and they vary from state to state. After just a few hours of research I am not sure if I am smarter and more prepared or just more confused! Thank God I have a teacher on "Team Sam" (my aunt) and her Godmother has been through many of these IEP meetings. Maybe with all of us putting our heads together we can make some sort of sense out of all the legal jargon and services.

I am still in the process of making connections with other ASD parents with kids Sam's age. I hope to find maybe a few of us that can communicate honestly and openly about what we are dealing with. I always helps to have that person to call that can truly understand what you are talking about and dealing with.

Sam is using more and more words, but her explosive behavior is still a daily battle. I am now looking into other methods of discipline. Time out and swats on the hind end are not effective and we really need to find a good method for defusing the situation before the loss of control. Again, more reading ensues!

Friday brings our in home evaluation for ABA therapy and I cannot wait to get this service in place and see how it impacts Sam's abilities. I have heard wonderful things about ABA and while trying to remain impartial, still have very high hopes.

I called today and requested the sedated MRI as the 2 attempts at an EEG were without success. I am also waiting to hear back about the blood work that was done 2 weeks ago. I sure hope it can answer some of the many questions we still have.

What is Autism? What's PDD-NOS? What's the difference?

There are so many ways to explain "Autism." Sam was originally diagnosed with PDD-NOS, and now has a diagnosis of Autism Spectrum Disorder. Here is the most "dummied down" version of an explaination I have found as of now. (Courtsey of WebMD) Hope this helps you to understand. I know it sure helped clear up this differences for me.


Autism Spectrum Disorders

The forms of autism are thought to overlap considerably. But the fact that there is wide variation in symptoms among children with autism led to the concept of autism spectrum disorder. Autism seems to be on the rise, and autism spectrum disorders affect between two and six children out of every 1,000 in the U.S. It's unclear, though, whether the growing incidence of autism represents a real increase or just improved detection. Early diagnosis of an autism spectrum disorder is important. That's because detection leads to treatment, and with early treatment, a child with autism can gain improved language and social skills.

Signs of Autism Spectrum Disorder

Autism spectrum disorders affect three different areas of a child's life:
social interaction
communication (nonverbal and/or verbal)
repetitive behaviors or interests

Each child with an autism spectrum disorder will have his or her own individual pattern of autism. Sometimes, a child's development is delayed from birth. Other children with autism develop normally before suddenly losing social or language skills. In some children, a loss of language is the impairment. In others, unusual behaviors (like spending hours lining up toys) predominate.

Parents are usually the first to notice something is wrong. However, the diagnosis of autism is often delayed. The parents or a physician often downplay early signs of autism. They may optimistically suggest "it's just a phase" or a trivial delay in development. Children with a suspected autism spectrum disorder should be evaluated by a professional team with experience in diagnosing autism.

There are three main forms of autism spectrum disorder, and two rare, severe autistic-like conditions:
Asperger's syndrome
pervasive developmental disorder, not otherwise specified ( PDD-NOS)
autistic disorder (Here's our Lily bug!)
Rett syndrome
childhood disintegrative disorder

Asperger's Syndrome
The mildest form of autism, Asperger's syndrome affects boys three times more often than girls. Children with Asperger's syndrome become obsessively interested in a single object or topic. They often learn all about their preferred subject, and discuss it nonstop. Their social skills are markedly impaired, though. They are often awkward and uncoordinated physically.
Because Asperger's syndrome is mild compared to other autism spectrum disorders, some doctors call it "high-functioning autism." As children with Asperger syndrome enter young adulthood, though, they are at high risk for anxiety and depression.

Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)
This mouthful of a diagnosis applies to most children with autistic spectrum disorder. Children whose autism is more severe than Asperger's syndrome but not as severe as autistic disorder are diagnosed with PDD-NOS. Autism symptoms in kids with PDD-NOS vary widely, making it hard to generalize. Overall, compared to children with other autistic spectrum disorders, children with PDD-NOS have: impairment in social interaction -- like all children with autistic spectrum disorder better language skills than kids with autistic disorder, but not as good as those with Asperger's syndrome fewer repetitive behaviors than children with Asperger's syndrome or autistic disorder a later age of onset However, no two children with PDD-NOS are exactly alike in their symptoms. In fact, there are no agreed-upon criteria for diagnosing PDD-NOS. In effect, if a child seems autistic to professional evaluators but doesn't meet all the criteria for autistic disorder, he or she has PDD-NOS.

Autistic Disorder
Children who meet more rigid criteria for diagnosis of autism have autistic disorder. They have more severe impairments involving social and language functioning, as well as repetitive behaviors. Often, they have mental retardation and seizures as well.

There are two rare, severe forms of autistic spectrum disorder that are considered separately from the others: Rett syndrome and childhood disintegrative disorder.

Rett Syndrome
Almost exclusively affecting girls, Rett syndrome is rare. About one in 10,000 to 15,000 girls develop this severe form of autism. Between 6 and 18 months of age, a little girl stops responding socially, wrings her hands habitually, and loses language skills. Coordination problems appear and can become severe. Rett syndrome is usually caused by a genetic mutation. The mutation usually occurs randomly, rather than being inherited. Treatment focuses on physical therapy and speech therapy to improve function.

Childhood Disintegrative Disorder
The most severe autistic spectrum disorder, childhood disintegrative disorder (CDD), is also the least common. After a period of normal development, usually between age 2 and 4, a child with CDD rapidly loses multiple areas of function. Social and language skills are lost, as well as intellectual abilities. Often, the child develops a seizure disorder. Children with childhood disintegrative disorder are severely impaired and don't recover their lost function.
Fewer than two children per 100,000 with an autistic spectrum disorder meet criteria for childhood disintegrative disorder. Boys are affected by CDD more often than girls.

Verbalizing Verbs & Constructive Constriction

Samantha is going through the motions everyday with her early intervention and the constant influence of myself and her daddy working speech therapy techniques into our everyday conversations with her. We have seen wonderful sparks of speech here and there, and they seem to come at the most random times. She will ask for something in more detail than a single word, she is learning to talk on the phone and has had several good (although very short) conversations with my mom and myself while on the phone. Her labeling is still gaining momentum, but her use of verbs has increased as well.

She is more opinionated about her desires (usually at meal time) and is still struggling very hard to communicate them. We fight the battles of tantrums that start with the frustration she has over something she cannot verbalize every day still. However, we are learning ways to help her through these tantrums quicker and to recover from them smoother. One thing that has been used by 4 different people in 3 different settings is a constrictive hold. It was 1st approached during an E.I. session then brought to my attention again after the special ed. teacher at Sunday school successfully used it on Sam. Matt and I them implemented it at home and if done at the right time in the right way, it is very effective. While not an instant fix for a fit, it is a way of getting that communication connection with her that we need to calm her down.

I am still reading material as it comes to me, however have about 4 books on the desk waiting their turn to educate me further. I have taken a less panic mode approach to all of this and am just tackling one thing at a time. The big picture is still out there and not clear, but if I can just deal with one thing then move onto the next....I seem able to breathe at the same time.

Smart, Secure Little Investment!

In these days of a failing economy you never know quite where to put your money for the biggest or best return. Sam got it right. She has collected pennies galore, and a few more valuable coins in her stuffed piggy bank for about a year now. I don't know if any of you have seen it lately, but it was heavy enough she could barely carry it! So yesterday I decided to hit a Coin Star machine with her bank and see just how much her cute little face has paid off. Well she had $21.46 in there! It's her money so I thought it only fair to spend it on her! So while she was at E.I. I went to Wal-Mart and got her stuff for her Easter basket. She got several little candy things and a new Backyardigans movie! Who says you can't get a good return for your investment these days?

Encouragement and Regained Strength

What a wonderful week this has been! Samantha started her early intervention at the center with Ms. Tara and seemed to do real well. Grandma and Grandpa were here the whole week and got to see both the triumphs and struggles of this journey first hand. They were supportive, compassionate, and very understanding of it all. They witnessed the personal struggle I am having and the lack of strength I have at this point. Samantha took to them with a wonderful acceptance and relished in their presence.

We had a 2nd failed attempt at doing an EEG, but are just going to roll with the punches and move on to the next test on the list. This coming week Sam will be evaluated for in-home ABA therapy. I cannot wait to hear what kind of benefits this program has to offer. Sam's blood work and genetic testing has been put in progress and we should have some results on those here in the next week or two. We are still on the waiting list for a slot in Vanderbilt's speech therapy group. I am hoping in the next month or so we will get a call from them.

Sam woke up this morning with the onset of a cold, but seemed to get better as the day went on. As the evening rolled around though she got stuffed up real bad and I fear a long night is ahead of us.

All in all this week was a great one filled with fun, family, laughter and lots of encouragement. It was just what I think we both needed.

Gearing Up For the Grandparents

This morning we all got up late (Hubby had the day off) and took our time getting around. Sam and I went into the kitchen for our usual routine of an apple cinnamon cereal bar and some milk to start the day. This morning no one was in a rush so I decided to make something more filling for breakfast. I asked Sam what she wanted and she replied with her tried and true response..."Ceeweeall." Translation: Cereal...accompanied with the sign. I told her today we were going to have something different, and asked again what did she want. To my surprise and great joy, she replied, "Bread and eggs!" Now for most parents of any typically developing 2 1/2 year old, this answer would not have seemed so extraordinary. However Samantha has up to this point shown very little free thinking, and almost no independent expressive language. If you give her an option she will repeat it and usually accept, but for her to determine on her own and be able to express a multiple desire is next to phenomenal. I grabbed her and scooped her up promising she could eat all the bread and eggs she wanted. It was a great start to a great day!

We prepared for the arrival of my parents and are very excited to have them here tomorrow evening. They will be here a full week and hopefully will be able to get lots of quality grandma and grandpa time in. Samantha is in for some spoiling! Then again, what are grandparents for?

Autism Awareness

Marriage/Divorce Humor

Hubby and I have always joked that on our 10 anniversary, someone somewhere had just lost a bet. We got married very young and, let's face it, divorce statistics are showing the odds are stacked against most couples entering into this holiest of all matrimony.

Here's our math:

Chance of divorce in US: 50% approx.
Chance of divorce in military: 55% approx.
Chance of divorce with an Autistic child: 80% approx.

So as it stands, 10 years into our marriage, we have about a 185% chance of getting divorced! LOL

The Misunderstood Aggression

Sam's in her favorite spot of the day (bath time) so I thought I'd take a minute to write a little. Today we hit a major rough spot and the aftermath left us both mentally and physically exhausted. Samantha has always done really well with "time out." She's complied with the rule of sitting on her little bench for 2-3 minutes and calming down. Lately though time outs have become more of a chore. She doesn't want to stay on the bench and takes it upon herself to get up after time is up rather than waiting for us to get her. Sounds like just a little push in power, right? That's what I thought too. Until today...

I told Sam to go to time out and KABOOM! all bets were off as she went into a rampage that consisted of throwing her bench across the room, screaming, hitting, kicking, screaming, screaming, more hitting, and even more screaming. This carried on for over 30 minutes. I continued to speak calmly to her as tears streamed down my face and stung my eyes. I could tell she had lost all sense of her surroundings or control over her emotions. I had to exert every ounce of energy to keep her from hurting herself, me, or anything around us. I told my husband I had to hold her so tight that I would not be surprised if she had bruises on her little arms tomorrow. (For anyone rushing to call Child Protective Services at this point, hold on, I'll get you the phone and their number.)

After her finally calming enough to catch our breaths, she looked me in the eye and began to cry. See in all of this fit, she didn't shed one single tear. Yet as she "came back" she was so sad and remorseful for what had just happened. She climbed into my lap, after her 3 minutes were up, and just sobbed . Meanwhile dinner had burned and the phone had rang 2 different times. I didn't care.

These explosions are becoming more frequent and more extreme. I am reading everything I can get my hands on looking for ways to handle these situations. At this point I may as well be trying to tame a tiger. I'm no more knowledgeable or equip for that either!

Dear Hubby mentioned how every night when Sam goes to bed how I just collapse with exhaustion and go right to bed too. Needless to say it's caused a cramp in our time together as a couple and no doubt will eventually take it's toll on our relationship. I just feel like I have 5 balls in the air and dropping one will cause it to shatter rather than maybe just bounce a little. He's right, I am exhausted. I'm tired, depressed, and worn the hell out. Bonus news: in the back of my mind I am always thinking about how he's going to deploy again and I'll be going at this on my own!

I'm in the process of trying to get approved for Respite Care. However, the budget for it has been cut this fiscal year and it may not be an option. I'm still going to try though. Tomorrow is another day and I'm sure (not to sound pessimestic) another issue to be had. I just hope to get enough sleep to recharge my battery. Reinforcements are on thier way. My parents will be here in about 48 hours, and they've NEVER been so welcome. Now how am I going to conveience them to stay? LOL

Rainy Day at Home

This morning I met with Sam's E.I. and Service Coordinator. Both are wonderful women that I feel lucky to have on Sam's "team." We talked about her progress and are preparing to write her IEP here in the next few months. I have heard such horror stories about IEPs and the many violations of them. I will admit I am a bit nervous about the process but am currently arming myself with plenty of knowledge and a few folks to help me along the path. I'm sure as time gets closer I will have more focus on this issue in particular.

It rained here all day so Sam was couped up indoors except for a short trip to the office. We did coloring, play doh, one major tantrum that resulted in us cleaning her room real well, and then a good long nap. Tonight we are spending time at home celebrating Daddy's birthday. He called to say he was on his way and Samantha did really well talking on the phone with him. She still won't hold it to her ear, but on speaker she told him "Love you," and "Bye bye, Daddy!" I love how she will carry around a play phone all day yakking into it like an auctioneer, but as soon as there is someone on the other end....silence.

Tomorrow will be an early morning then an afternoon at home preparing for Grandma and Grandpa's visit. We have been talking with Sam a lot about them and Grandma talks to her on the phone at least every other night. I hope she is grasping a concept of them and their impending arrival.

I received 2 new books in the mail today (Thanks to my wonderful aunt's generousity and support) and will be adding them to my list at the bottom of the blog. Check them out.

Sunday was "Fun"day!

What do the following have in common?

Dan Marino - NFL Quarterback
Jenny McCarthy - Actress
Toni Braxton - Singer
Holly Robinson-Peete - Actress
William Christopher - Actor (Father Mulchay from M*A*S*H)
Doug Flutie - NFL Player
Didi Conn - Actress (Frenchie from Grease)

They are all parents of children with Autism and are fighting to raise awareness about the epidemic that is sweeping our nation. Please take a moment and check out one of the links at the bottom of my blog. Spend just 5-10 minutes learning something new about Autism and the children who have it.

Sam had a really good today. The weather was amazing here and she was finally able to get outside and play. She ran all over the yard smiling the whole time. I was so happy to toss her in the tub and see her muddly little hands and face wash clean. Anytime the tub water is dirty after bath time...it's been a good day! Tomorrow we have to be up and at the lab before 9am for her initial bloodwork. I hate the thought of her getting poked and in pain, but I know it is necessary for us to figure out what is going on.

I am waiting on the arrival of several books from my wonderful aunt who is an amazing resource and support for me. I also have ordered a few myself and tonight got one for Sam about emotions and feelings. I am back on the path, soaking up any information I can. My motivation is back and I am ready to take another step forward. I need to ride this out as long as it lasts, as with Sam's rough days....my motivation seems to fall short and I find myself in a funk too.

Hope everyone has a great week!

A.U.T.I.S.M

The Sacrifices We Make

As women we understand that there are many sacrifices to be made by becoming mothers. Sometimes our careers take a back seat, or our education is placed on hold, or our social circles change and friendships grow apart. It is expected and understandable that life is going to change by adding a child to the mix.

However, when a child with special need comes along, not only do your own dreams and aspirations take the back burner, somtimes they are abandonded all together. No longer can you return to work after maternity leave and drop your child in a reliable daycare facility. Your employeer is less than likely to undersand the 3 times a week you will need to leave early in order to get your kid to speech, or ABA, or any other therapy. Forget going to college right now, as every spare minute you have to read or study is no longer available for Latin, American History, or Political Science. All of that time is now dedicated to researching new things regarding your child's disability and in my case, how to just communitcate with her better.

Even your social circle changes as you have to cut lunch dates with the girls short or you find that friends with typically developing kids move away from your circle and onto the moms with kids in dance, soccer, or simular activities that your child may never be able to be involved in.

You begin to feel isolated. There are the few that stick by your side, sympathetic to your situation even if never fully feeling your struggle. Those people are the ones to value. They are the ones to hold onto and lean on. You have to realize that they love not only you but your child too. Even still, there are the days where you feel you have given up everything you hoped for and dreamed of for this child. You feel duped in the promise of motherhood and all that it had to offer. You asked for the job just not necessarily with this particular benefit package.

"Red Flag" Photos

Samantha at 1 year 8 months

Lunch time at 2 years old.

Tower of blocks at 2 1/2 years old

Lining Up in size order at 2 1/2 years old.

Lining up again all facing one direction.

Blocks are always stacked colored side to colored side, ALWAYS!

Good Day, Gone Bad

I am learning how quickly things can go from good to a complete and total nightmare. Since Samantha cannot process her emotions or verbally express, "Mommy, I'm mad!" or "I don't like the taste of this." it usually results in a blood chilling scream and sometimes the ever embarrassing out of control tantrum. It may be set off by her no longer wishing to ride in the cart, being told she cannot have any cheese for snack (because it increases her constipation), or even her going to put her toys away and the normal place for something already has a toy there. Usually these fits can be settled down in a matter of a minute or two, but sometimes they rage on for 15, even 30, minutes.

Samantha was scheduled for her EEG today and they requested she arrive drowsy. Hum....a two year old whose tired...that's going to be a bad combination any way you slice it. Anyway, I made the appointment for 3pm and hoped to keep Sam up past her nap time in order to comply with the request. No such luck. By 1/2 past 1 she was in the midst of a total meltdown. On one hand I will not tolerate her out of control fits, but that the same time I know it was my decision to skip nap that brought her to this point.

There's the fine line. I understand that Sam cannot control certain behaviors, however in order to function in society, she also cannot be allowed to just get away with them either. I don't even believe this is an ASD issue, but a general lesson in life every kid has to learn. I've had all sorts of unsolicited advice on this issue from those who believe, "Unacceptable behavior is just a phase and kids will just outgrow it on their own. (said as their 6 year old climbs over the dinner table in a restaurant to take the fruit out of an alcoholic drink and eat it)" to those who say, "That kid needs her a** beat!" To those people I want to say..."You think I haven't thought of that?!?!"

Regardless of how anyone else thinks these things should be handled, or the appreciation I have for others advice (as ridiculous as it sometimes is), I know that Sam is a unique kid with unique issues and only my way is going to be what's best for her. I'm confident enough as a parent to not let what someone else thinks of my child effect how I think of myself as a parent. I may not be the expert in anything else, but I know I am the expert on Sam and how she is taught.

So back to my original observation. Routines are proving much more important than I had thought. Some things we can waiver on a bit, and other things are just written in stone. Nap time? That one's in stone.

Why me? We all ask it.

I think the question of "why me?" is one that we all ask in our lives over and over again. It's human nature to wonder if our circumstances are effects of previous actions or if there is a greater power causing things to come about in our lives for His own amusement. If we are able to answer "why me?" then we will be able to see the clear purpose of our life.

Not to be excluded from the inquiring minds who want to know, I ask this question myself. Even my best guess would probably be a far fetch from the real reason but I'll give it a shot. Some have told me that having a child of special need is a complement from God. That maybe He knows I am more compassionate, patient, pro-active, and understanding than other moms might be, and he knew that Sam would be better taken care of with me. While I appreciate the flattery, I am not really buying into this version. I don't know much but I do know that patience, understanding, and compassion are NOT (nor have ever been) my strong points. I almost feel just the opposite might be the reason. Maybe God saw that I needed a good lesson in those things and what better way to give me a dose of them than by giving me a child of special need? Of course, I have always been a fan of the sink or swim method and theory in general.

There are some who believe that Samantha chose me, rather than the notion that I created her. If this is true, I can only imagine the let down her little spirit feels getting the mom that can't yet process all that is in front of her and is constantly stumbling over herself trying to make things happen for Sam. It's like Ed McMahon showing up with the check at your door only to find out he's got the wrong address. Damn!

I really can't say "why me?" because the bottom line is it doesn't matter why. It still is me and I still have to just accept it and move forward. I do ask though, "Why Sam?" That one I do know the answer to....because she is destined for wondrous things and carries a light inside her that burns brighter than any understanding I will ever have. The spirit of those who love her that have passed is inside her and it shows in everything she does. I believe this world needs that little girl way more than she needs us. I can only imagine the lessons she will teach us all.

Diagnosis Day

Samantha had a follow up appt with her Developmental Ped Dr. on Monday and he has now seen enough evaluations and time pass for a more definite diagnosis. Samantha has moved from a PDD-NOS diagnosis to an ASD diagnosis. He had hoped that between her last evaluation from him and this one that she would move into the "normal" range for speech, language, social interaction, and emotional processing. She sadly has not.

Our 1st line of work will be to have a full set of tests run on Samantha to determine areas of focus. She is having a EEG on Friday to make sure her eye twitch (That she's had since birth) and constantly interrupted sleep is not a form of seizure that is not outwardly noticeable. She will also see a pediatric GI Dr for her chronic constipation issue (which goes hand in hand with Autism) and she will have blood work done to make she she does not have any vitamin or mineral deficiencies as well as a notation of her iron, mercury, and lead levels. Genetic testing will rule out Rhett's Syndrome and other chromosomal issues.

It seems like a lot to put her through but most if it is just done with a blood work-up. If her EEG comes back with something more to look at then we will consider an MRI. He wanted to hold off on that test as it requires her to be sedated and he didn't want to put her anything unnecessary.

I showed him the "red flag" pictures and not only was he amazed by them but he asked to use them in a paper he is publishing through Vanderbilt Medical Center on ASD. I asked if her "pattern obsessions" could just be signs of a high IQ as some have suggested. He said yes, in a child that does not also have the social, speech and language delays Sam has. In her case they are tell tale signs and should not be ignored or dismissed.

In the same time frame as all of this decision making, we have lost another daycare provider and after 6 interviews we are still unable to find anyone reliable or willing to take on Samantha at this time. So after a lot of prayer and soul searching, I gave notice at my job today and will be going back to the roll of full time mommy. I am heart broken that I am no longer in a position to bring an income into our home, but also know that with referrals to many different specialists, and the added services Sam will be getting now...I am needed here for her. She begins Early Intervention Therapy next Monday and Wednesday from 9am-11:30am still with Ms Tara who is amazing! We will have speech resume as soon as possible and that will require 1-2x/week trips to Vanderbilt. Sam will also see an occupational therapist on occasion temporarily until no longer needed.

I am again, as usual, overwhelmed and mentally drained from all of this new information. I really admire Samantha for being able to just get up each morning and take on whatever the day brings with no worries about tomorrow, next week, or next year. This week has been one of the hardest for me and I struggle very hard to be accepting and understanding of all of this.

I ask for continued support and prayers. You all have been so amazing and we are so blessed. I will send you information and articles I find from time to time. If you don't wish to read them that's OK, just hit delete. I just know some of you have said you wished you knew more or could do more, and this is a good place to start.

Hope you are all well and we love you lots!