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.