Update for 12/30

Hope ya'll had a Merry and Happy Christmas, we made it, some highs and lows...

Here's a picture of me and my girls, I am happy because at least 2 out of 3 are smiling!!!

For an update, Kaylee has been on Lexapro for a over a week and a half now, and Singulair for 2 and a half weeks, and I have some mixed reviews.

Singulair has taken care of her allergies now. No more night coughing and runny nose. That's good.

Now for the Lexapro, Kaylee is talking more, singing less (her singing was either stimming or boredom?) She is doing better about paying attention, answering questions, she is talking more and now she is less echolalic and actually learning from the Teach2Talk DVDs I bought her that teach her about her pronouns. I practice throughout the day "you" and "me", "his" and "hers" and more, and she is catching on but not all of the time. She is appropriately using "she" and "you" and "my" right now.

The cutest thing she has started doing is addressing people "Come on Momma, let's go..." and now she has decided to boss her little brother around at times like a any big sister should saying "Joey, no!".

It's difficult for me not to get discouraged, because her habits of speaking in the wrong way are ingrained. Kaylee seems to be used to thinking in a way that takes longer to learn. It is as if she speaks language visually and then converts it to an auditory language. Like Temple Grandin calls it: "thinking in pictures".

Something else has emerged in Kaylee, too. I am not sure if she is pretending or scripting, Kaylee is playing with her toys, but she repeats how she is taught to play with things. An example: "Hey, let's go for a ride" with her Little People in cars, but she's missing the creativity we see in most children.

It is overwhelming to think about how many things Kaylee has to learn, when I see Joey learning so easily, just by being exposed to things. How can I possibly teach her everything she needs to know, on top of what else she needs to learn?

On the bad side, Kaylee has been misbehaving like never before. She acts like a girl who needs a nap, but she can't take one. When we sit down to eat she can't sit still, she never used to be that way, all squirmy and wiggly. Yet she lays on the ground tired and sucking her fingers like she's tired.

During Kaylee's bad times, she leaves her momma in tears! She breaks down and gets very upset. She is uncooperative and defiant, and I get scared because I don't know how to handle it sometimes. I just try to stay calm and not back down. She's eatin' those green beans, darn it!

I had finally had it, so I called Dr. Russell's office this morning and to my chagrin, he answered the phone! He told me to stop the Lexapro for a week and rule out the Singulair as the problem.

Sigh, I was looking forward to the Lexapro since before we went to NY, because I knew that was the golden ticket, what really helps the kids. Guess it's more waiting for now...

The Good Shepherd

Since Kaylee's diagnosis in August of 2007, my life has been an emotional roller coaster. For a year after that I had been going through all of our options for treatment for her from diets to supplements and many more interventions. For so long I just didn't know what to do, there were so many promises everywhere I turned and nothing worked.

Especially today, I walk the line between elation and despair. Every few weeks a new medication comes along with die-offs and reactions and a little growth in some area. And each time I wait on pins and needles, watching for something, some confirmation that says I can can relax now, Kaylee is going to be OK from here on...I am waiting to get to really know her.

And when we have setbacks and die-offs, I fear. I grieve all over again as if it were the day I left the doctor's office with the word autism ringing in my ears.

I am so tired of this roller coaster. How does one hope with all of their heart so badly and not get disappointed? Is that possible? Or because I truly hope, is that just the heartbreaking risk I take?

That is one of the hardest parts of Kaylee's diagnosis I have had to deal with is not being able to just accept autism and move on. Because there is a question of recovery in these children a parent always wonders and hopes their child is that one child that can be helped...therefore delaying the "acceptance" stage.

My wondering has left me stuck in a wilderness of waiting. I always dreamed that Kaylee and I would have a close bond where we could talk about anything for hours, the way my mother and I did. Now I live in an up and down cycle of grief and hope: grief of the loss of a dream for my little girl, and hope that the dream is not gone.

I am so tired, a deep tired that reaches down to my soul. I haven't had peace in a long time. I have been waiting on the edge of my seat, wondering what the next act of this life will be: a road to recovery or time to start accepting. It's so tiring to wonder like that. I have just been surviving, missing many moments with all of my children because of my lack of joy.

Sometimes I wish I could just let go, stop fighting so hard with all that I have, but I am afraid...if I stop fighting for Kaylee, who will fight for her?

As I ask myself this, I close my eyes and I can see my Lord Jesus, He holds out his arms to me and asks "do you trust me?" Isn't that what this is all about? It always comes back to this point: Do I trust Him? He who stopped at nothing to save me from my sins? How could I not trust Him?

I see myself across from Him, holding Kaylee so close, clutching her so hard, afraid to let go. I am afraid if I do I will not get my dream. I am afraid if I let go, I won't get what I want: I want Kaylee to get better. I want to sing and laugh and share with her.

Kaylee is His child, I forget that sometimes. I pray as if I am pleading with God to help my child when He loves her so much. I don't love her anymore than He does. Jesus laid His life down for her, too. I need to trust Him and what He wants to do with His child.

I don't want to fight her Father's will her, I want to trust Him, no matter what. Every morning, I am going to give Kaylee, and my other children to Jesus. I am going to trust Him.




I am the good shepherd:
the good shepherd giveth
his life for the sheep. John 10:11

Terrible twos or autism?

Recently, I posted that Kaylee was having trouble with tantrums and transitioning, and I attributed it to her having autism. She says "no" when she means "yes" and goes back and forth and can't make a decision. She cries and protests when she can't have her way. She fights for her rights when someone takes her toys.

For many months, Kaylee was in her own world, unable to move forward in her social and cognitive development. Although she was growing physically (even that is arguable, before we adjusted her diet she was very thin and underweight, but today she is in the normal range for her weight) Kaylee was not growing socially, emotionally, and cognitively. Most days all she did was "stim" by chewing on her toys, spin in circles, eat her books, or line up her toys. If someone walked in the room, she never noticed. She really tried to avoid people, especially children.

Now I am going to digress a bit and give you some background, if you are interested. I have a friend in my area who has a son was diagnosed with autism and is the same age and close to the same level of development as Kaylee. She is the one who told me about NIDS and her son has been doing the NIDS Protocol a bit longer than Kaylee and he is responding well. But my friend was discouraged because of all of the behavioral problems she was experiencing with her son, all problems similar to mine with Kaylee.

She spoke with Dr. Russell this week about these issues and he told her to read up on typical 2 year old behavior. He explained that even though our kids are clearer, they missed time while they were stuck in their own world, and they still need to go through those developmental stages. He suggested that many of the problems we were experiencing were behavioral in nature and not greatly related to autism. One clue was that the tantrums weren't the typical autistic "meltdowns" that last a loooong time.

We officially lost Kaylee around 13 months of age, but I suspect she has been slowly getting better for a while now, especially when we changed her diet. Now that she is coming out of her own world, it is as if she is starting where she left off. Kaylee is 3 and a half years old, but she seems like she is just above my son developmentally, who is 21 months old. When I looked up "typical 2 year old behavior" on the Internet, it was like I was reading about Kaylee's struggles. Not being able to make decisions, short tantrums when she doesn't get her way, etc.

Kaylee still struggles with auditory processing, like understanding what people are saying, and echoing things she doesn't understand sometimes. But when she was evaluated we were told that she had the processing of a 2 year old. This seems to support the theory because she has the processing of a 2 year old, she is acting like a child who is 2 years old. It makes sense to me now! Looks like we may be going through the dreaded terrible twos a bit late.

This didn't occur to be a possibility to me before, because Kaylee is my first born and I am not really experienced in child development. And there's nothing like living with it, no education can replace real time experience. I had no idea what was to be expected.

All of this time I have been expecting Kaylee to be exactly where her peers were and sinking into a depression when I compared her to other typical children her age.

The truth is, Kaylee is stimming 95% less than she used to and she wants to play with other children, that's groundbreaking in my eyes! I am very encouraged and now I realize I was mistaken in thinking that Kaylee was going to be totally typical after biomedical intervention. I have had unrealistic expectations... This is going to take time for Kaylee to get better and learn how to act and communicate.

Soon I hope to have good updates concerning Kaylee since we will be giving her the Lexapro this week.

Take care and stay warm!
Jennie

The Next Phase

This morning I called Dr. Russell's office in Texas, and they told me I didn't have an appointment! I was ready to cry I was so disappointed, every morning this week I was waking up asking myself "is it Friday yet?"

Thankfully, they still worked me in for the appointment this morning (woo hoo!) and I spoke to Dr. Russell and he said he is very pleased with how Kaylee is doing. Kaylee's eosinophilic (a type of white blood cell that is involved with allergies) percentage is still a bit elevated and he said that he wants to address that with Singulair for her allergy symptoms, because the Zyrtec worked, but it makes her irritable.

A side note here: I did do a little "Zyrtec Experiment" this week, reintroducing it to Kaylee every other day, and I saw a difference in her behavior immediately. The next day, no more panic attack when putting on her shirt over her head. Yay! I am not sure why it makes such a bid difference, but it does.

Next week I will be starting Kaylee on Lexapro (a very very small dose, 1 mg a day) and I am really looking forward to that. Dr. Goldberg and Dr. Russell have said this is the major medication that makes a big difference in our children diagnosed with autism because it gets blood flow restored to the parts of the brain that are deprived.

Dr. Russell said he was encouraged and that we seem to be right on track with Kaylee's treatment. Kaylee is doing much better not only physically but cognitively, too. When I told the doctor that I was concerned about her reemerging anxiety, he told me that he sees that very often in our kiddos because they aren't always sure how to handle all of the new input into their world. Consequently, they react with fear at times. Dr. Russell reassured me that he believed the Lexapro would help with that, too.

It's true because Kaylee really is coming out and noticing the world around her. She addresses me "Great job, Mom!" and she wants to see what I am doing. She asks to help me cook dinner (tonight she shredded cheese and helped cook beef) and she tries to help me take care of Joey and Abbie!

I have a funny thing to share, actually...I was feeding Abbie her dinner and walked away to get a napkin to wipe her off and I came back and Kaylee took it upon herself to feed Abbie! I hurried up and tried to get it on camera:

This Story Has Stolen My Heart...

I just wanted to share this newspaper article I read about a lady who lives near Milwaukee, Wisconsin. She is looking for a family who will take in her grown son with autism and love him.

Aging mom seeks family to love her autistic son

May God bless you richly...
Jennie

Update for 12/3/08

Recently, I have been espousing how well Kaylee has been responding to the introduction of the NIDS Protocol, and it is true, but we have had some setbacks lately, which have been very discouraging, but I am determined to tell the whole truth and nothing but the truth on this blog!

While it is true that we have seen gains both cognitively and medically, lately Kaylee has been getting difficult again, with many crying spells and difficulty transitioning again. Also, Kaylee has been up at night coughing again with a runny nose for just over a week.

So while the other night I was beside myself with grief thinking we would never figure things out, I was ready to throw in the towel and accept defeat. However, once the clouds cleared up I realized these allergies may be the reason for the behavioral backslide.

Here is my theory: I believe that Kaylee's allergies are starting to surface because of the treatment. In September when we traveled to NY to see Dr. Russell, her bloodwork showed that she had definite environmental allergies but we never saw any signs of them. We were told it was because her immune system was so overtaxed that it couldn't respond with any allergic reactions. It could be that her immune system has had help with her viral infection that now it can attend to the allergies...and I have noticed that Kaylee did start these allergies again when we stopped giving her Zyrtec.

Next week I will be speaking again with Dr. Russell, in the meantime I will be doing a bit of an "experiment" to see if Kaylee's behavior and allergies get better on the Zyrtec. Also, it is possible that we will be entering another phase of the protocol, which is starting Kaylee on a low-dose SSRI (Selective Serotonin Reuptake Inhibitor...say that 3 times fast!) to restore bloodflow and activity to specific areas to her brain. I explained that earlier in my blog with in this post The NIDS Protocol.

I will be explaining more about NIDS in weeks to come because I haven't really heard a thing about it anywhere! It deserves a harder look from people because it has worked for many children. We need to do everything we can to help our kids, and fast. Whatever it takes, we can't just ignore the ever growing need to address the ever growing population of children with "Autism".

God be with you until next time!