Morning Announcements by Nemi

What an amazing Tuesday we have had.

It started with an amazing event.  Nehemiah was selected to read this morning announcements at his school for the entire school.

What an honor! I was so excited for him and practiced the words that he was given. We talked about what to do and what not to do.

"Ok Nemi, you have to speak loud.
"You have to make sure you say ever word.. do not mumble.
"If you get nervous, that is ok. Just read all the words and then tell Ms. Doering you are nervous."

Since I was home with the kids I was not able to be there in person and see him. Kimani recorded this video for me and when I saw it I cried so much - I was so proud of him.

Anyway, after school we all went to the movies to see Rise of the Guardians and celebrate Nemi's big day in school.

Nemi's Lunches

You know how I have my monthly dinner calendar, well I just finished Nemi's lunch calendar for December. This is a first - thankfully it is a short month. We will see if I do it again or not. Wish me luck. :)

Here is the link that helped me get started, but by no means am I gonna do so many different types of lunches.  

I created five lunches one for each day of the week and then repeat them throughout the month. 

Nemi's birthday

Last year Nemi's birthday was quite an ordeal at the school this year.  I made for him cake pops to share with his classmates.  I even created the display box to hold the pops.  Unfortunately, not all the pops fit in the display so I had to improvise and arrange them all around.  We had so many pops even the teachers and the aides got a couple.

Once we arrived at the classroom we had to wit a few minutes for him because he was coming from his group therapy session and was not finished yet. Suddenly, we hear a commotion and it was Nemi with his aide, two other teachers and like an entourage of kids.  His aide told me that he kept inviting his friends to the 'party' as he made his way through the hallways and so they came and so did some of the teachers.  That was so sweet.

The kids in his classroom had been told that it was Nemi's birthday and when they saw us with the cake pops they got really excited and sang him the Birthday song and almost on queue music began to play everyone began to dance.  It was so much fun. At one point I was looking for Kimberlee and she was at the front of the class dancing with Nemi and his other classmates.

The best snack time celebration for Nemi ever. I am so thankful to his teachers and the kids at that school so much who love Nemi and all his ways.

Nemi and his toys

We have put away a few toys from the kids because there are too many and they are just everywhere.  Today, Nemi asked me for his teddy bears, which are a few TY toys he plays with and when I gave them to him he was so excited and this is what he said,,, with is broken speech... too cute

"oh! wow!  

"that's so exciting

"I lost you

"That's ok I apologize!!"  

Awww!!! too cute telling the toys sorry I lost you and apologizing for it. 

Another Nemi Story

Recently while the kids were cleaning up before bed time I had told Nehemiah to take the handle portion of a broken sand castle shovel and put it in the trash.

Instead he put it back in the toy bin. Like all obedient children do.

A few days later we are all having dinner together and Kimani had to step out. As Kimani makes his way out Nehemiah became very interested in looking at the door. When Kimani opened the door to leave the broken shovel handle popped up from out of no where and Nehemiah began to crack up...

I said, "Nemi, did you booby trap the door?" and with the biggest smile he says, "yes!" HA HA HA HA !!! it was so funny we all busted out laughing.

I need to do a better job at keeping track of these stories. My little munchkins are so funny and they have such a good sense of humor all around.

Stealth Nemi

Recently, Kimani and I were talking about the fact that Kimberlee waits until she thinks we are asleep to sneak into our room and jump in our bed with us. Yesterday, she got caught right at the door to our bedroom and Kimani called her over and asked her if she was ok, knowing her intentions, kissed her and sent her back to her bed. Surprisingly, she did not come back.

As he told me the story we began to remember how Nemi would tip toe his way to our room and would walk right up to our faces to see if our eyes were open. He was so quiet I would often be startled to see him in front of my eyes in the middle of the night. Other times he would go next to one of us and if we said go to bed he would go around the bed to the other parent and try to get in the bed that way. That technique worked more often than not.

Nehemiah's update

Well since I published and update on Kimberlee and Daniel, I had to continue the brag night with some 411 about my boy Nemi.

He finished first grade with flying colors. Getting several 100% on spelling tests. He did really well. At the beginning of the school year it was considered that if Nemi had a hard time with the class work then the curriculum would be adjusted to suit Nemi's learning needs. Thankfully, the curriculum was never altered. He did all the lessons along with his first grade class. He was fully transitioned to have lunch with his class in the cafeteria. Previously, he would have lunch with his special needs class in the classroom. However, he progressed so well socially that they began to shift him to the cafeteria. At first it was only of Fridays, then it was Thursdays and Fridays and so on until he was in the cafeteria all week long. that was a big step as lunch with 75 first graders can be overwhelming and noisy in comparison to eating with five others kids in a classroom.

Now he is in summer school gearing up for second grade. We are looking forward to another successful year.

So proud of you Nemi, keep up the good work.

Nemi's 7th birthday

I want to save this video clip of Nemi's class singing him happy birthday.

Izzy's time out

Who is Izzy? He is the cabbage patch we had to buy when the 'original' (Tommy) got tossed out after leaving him behind at someone's house.

The Story:

A few nights ago Kimani was playing his guitar as we were preparing for family prayer. Nehemiah likes to touch the strings on the guitar and 'play' along. This one particular night, Kimani asked Nemi not to touch the guitar. Nehemiah thought it would be great to get his buddy, Izzy to touch the guitar. Kimani then says, "Izzy don't touch!" That is when Nehemiah decided to put Izzy on the time out chair for 'not listening' . We laughed so hard.

It gets better. Nehemiah then says to Izzy, "listen for the timer!" as he went to the microwave in the kitchen and pressed the 1 minute button to get it going. We laughed at that too.

The best part is that one minute was too long for Nemi to wait so he stopped the microwave 32 seconds in just to get Izzy off time out.

He is too smart - he had us rolling with laughter.

Sox vs. Socks

Nehemiah is so eager to read that every time he sees letters he will say them. I have been encouraging him by asking him to spell... everything. If it is time for dinner... how do you spell eat? if it is bed time.... how do you spell pillow? and so on.

Recently he was in his room getting dressed and he was putting on his socks. Kimani was in there helping him. Nehemiah says, "socks. s. o. x." Kimani says, 'no Nemi that is baseball, s. o. c. k. s." and he repeats and I look at Kimani and we both smile... it was so cute!

Let the children come unto me

As Christians, it is important to us to teach our children that reading the Bible and prayer are an essential part of our lives.

Though we are never fully sure how good a job we are doing, God gave me a glimpse of the impact our efforts this morning.

As I am preparing breakfast Nehemiah walked in the kitchen (and his shadow Kimberlee behind him) and here is our dialog:

-Are you hungry?
-yes
-do you want bagel or french toast?
-bagel
-ok sit down I will give it to you
-Jesus... pray... Daddy... work... help me... and food... amen

I mean one totally has to fill in the gaps, but you get the essence of his little heart. He prayed to the Lord as we always do for Daddy at work, for God to help him in school and for his food. I was so blessed by his little prayer.

The Dentist with the gentle touch

Today was the kid's dental appointment. It went pretty smooth, Dr. Mann is awesome with Nehemiah and he just has a way to make him feel at ease. I really give it to him and how he gets work done in his little mouth without a mouth guard.

I was blown away when he told me Nehemiah's permanent molars are coming in... What!? my little boy is getting permanent teeth? Oh! no! he is getting so big. Soon his baby teeth will fall and then the rest of the perm teeth will come in, too big for his little mouth, and then he will be entering puberty. Oh! my goodness. I cannot believe it.

The dentist tells me Nemi will have to get sealants on the next visit to protect his molars from cavities and what not. Boy oh! boy. My baby is so big.

Kimberlee, who got out of the gate fast with her first teeth VERY EARLY (at four months), is now behind schedule on getting the rest of her teeth. Go figure!

I was a very proud Mama to report to the dentist that Kimberlee no longer used her pacifier. He commended me on it and told me that the pacifier is basically a crutch for the parents. Most kids learn to self sooth very early on, but the parents have a hard time with the transition. I said, "Yes, I know my nephew is 5 and still has his pacifier." He said, "yeah! that happens a lot."

******
But I think that it is easy for him to say that we should just remove the pacifier when the child is between 12 and 15 months, but he does not really know the situation in each home to say that. Like my brother had a second baby and it was not easy to remove the pacifier off the first child while the second depended on it. I think each family is different. Even my friend Marisol followed doctor's orders and took the pacifier away at one year old and now that her daughter is about to turn two she told me she would have kept it a bit longer if she could do it again. See, I think as parents we just choose to pick our battles.

As for me, it was a definite mental decision because I got to know my Kimberlee. And I saw that she did not use the pacifier to self soothe. She popped it in her mouth because it was there, not because she needed it. She would have one clipped on to her clothes and she would go find a second and she would swap them in and out like a little game. They were like toys. When I noticed that she was fine all day and even during nap/bed time) she would always spit it out of her mouth) then I knew she could totally live without it.

The Grass is Always Greener

Very seldom is the Pediatrician's office vibrating with kids. Maybe because it was after school, maybe because it is Friday, or maybe because a snow storm is coming, today the waiting room was full of kids. It almost felt crowded.

Since Nemi's doctor specializes in dealing with children with developmental delays and on the autism spectrum many of the children there were going to get the hyperbaric oxygen chamber treatment (http://en.wikipedia.org/wiki/Hyperbaric_medicine). Looking around at all these kids suffering from autism put things in perspective a bit for me.

Living day in and day out with a child with this condition has its challenges, but at the same time, today I saw that it really could be worst for us. Though no doctor would give me a definite response that Nehemiah's case is 'mild' looking at some of the other kids my heart went out to their parents. Those parents have a much harder load to carry, not that mine is a walk in the park. You see, Nehemiah walks on his own, and talks out his needs, and listens (on occasion - :D) and he looks at you and he writes his name and he does a million other things that 'traditional' parents take for granted from their children and we celebrate Nemi and his progress even if it is one inch forward.

The other day we went to visit a friend and she told us how her nephew is 10 years old with autism and he does not speak. He only communicates with sounds. That broke my heart. But their point was to say that Nehemiah is doing so well. Kimani gave them the most perfect answer that I will treasure forever. "What you see in Nehemiah is a miracle! The Lord has answered us and He is the one healing Nemi and bringing him this far!"

Living the Stories

I hate it when I do not write for a while and then all my wonderful stories get all put in the back burner.

Well, I am exhausted from nesting and doing way too much here in the house, but I am sitting here thinking about Nemi and Kimberlee and all their crazy ways. Here are some random stories I do not want to forget:

-On our recent Christmas trip to Florida we took a late flight (9pm departure - and it got delayed [the nerve]). Once we were up in the air Nemi looked out the window and saw the street lights of the city he said, "Wow! it's Christmas, it's beautiful!" right then and there my heart melted "Aww Nemi, It is Christmas!"

-Nehemiah loves for Kimberlee to chase him. Just a few days ago they were running back and forth from the kitchen to the living room, but at one point Kimberlee took a detour and while Nemi was on the sofa waiting for her, she went to the room to say hi to Daddy. When Nemi noticed he said, "Wait a minute - Hold on." I cracked up as he stomped to the room to get Kimberlee to resume the game.

-We are trying hard to get Kimberlee to go to sleep by herself (instead of on my chest) and on her own (instead of me standing by her crib). So we are trying the Ferber method which tells you to allow your child to cry first for only one minute and then increase in increments as you see fit to allow the child to get used to putting themselves to sleep. Well, since Kimberlee and Nemi sleep in the same room he often gets up to give her the pacifier to help her quiet down. One night we found it funny that Nemi took on the Daddy roll and said in a 6-year-old stern voice, "No no no Kimberlee time to sleep." So funny

-Last weekend I had a 'family moment' like one of those times when you feel like you are doing exactly what a family should be doing. I was in the kitchen when Kimani announced he was taking Nemi down to the car with him to fix spark plugs or something. I stayed upstairs with Kimberlee preparing lunch. That moment took me back to the days when my Dad would fix cars with my brother in the garage and I would help my Mom fold laundry or clean the living room. As I peeked out the window to see them in the parking lot 'working so hard' it was nice to be in the past, but in the present at the same time.

- A few days after finding out we are having boy number 2 I said to Nehemiah,
"Hey Buddy! come say hi to your brother Samuel."
He responded, "Daniel?"
I said, "No Samuel."
Then he said, "Daniel!"
And of course I did what any mother who has had a name picked out prior to conception... I said, "Yes, Daniel"
We decided to change his name right then and there. We figured Nehemiah is a member of our family and he totally could contribute to the naming of his siblings. At least he did not say Bubba or Bofa or something like that. We cannot wait to meet Daniel in June.

This is all for now. Hope you enjoyed the stories as much as I loved living them.

Talk talk talk

Nemi has been talking so much, but one of his latest things that crack me up is when he sees something and then says, "Oh! look it's beautiful!" It could be the moon, his own drawings from school or the DVD of Alvin and the Chipmunks starting for the 8th time.

To Gluten or Not to Gluten

Today I was thinking about Nemi's Gluten/Casein Free diet. I had started it back in June, and the entire summer I was very strict on it. Now, in September, I find myself slacking a whole lot. I am not sure if it is because:
(a) we miss 'real' food at times. Not a whole lot of things, but bread we miss a lot, and juice. The list is not long, but after living 30 years of bread and juice it takes a lot more than three months to get used to not having it. Though when we have it we feel sick to our stomachs, which confirms how bad bread is to your system, we still crave it once in a while.

(b) Nemi does not eat as well and at times it is just easier to give in to the junk I know he will eat than to fight or even let him go without one meal.

(c) we think that it does not work in terms that I am not quite certain it was just the food that made a significant difference though it certainly does not hurt.

or (d) maybe because he has improved so much that we think we could just ease back to the old way of eating (I guess this goes with c)

Not sure why I am slacking off, but in either case I feel terrible about it because I want to continue to do the best I can for him. I think I want to give it another 3 months of a 100% conversion to the diet before I decide if it is working for him or not.

STEP 1: TRANSITION TO A HEALTHY DIET

Ok so. Now I am reading book #2, Eating for Autism to help me understand why I have to delete so much out of his diet and what I need to introduce.

It is a great book. It is teaching me to take it one step at a time. It has 10 steps in total. It says that for some kids it is not necessary to go through all 10 steps. One family may only need steps 1 - 3 and that will be sufficient while others have to do all 10 steps. In either case, you cannot skip steps and you have to start with step one.

STEP 1: TRANSITION TO A HEALTHY DIET

Basically it tells you that though the FDA has approved 24 different types of additives to foods called 'generally recognized as safe' (GRAS) there are 4 specific ones that dietitians, scientist and doctors are concerned with regarding how they effect children with disorders. Those four are: artificial colors, artificial flavors, artificial preservatives and artificial sweeteners.

yada yada yada... at the end of the day I have to read all labels and get rid of everything that has the four "bad" additives

Artificial colors: Artificial Color FD & C, US Certified Food Color, FD&C Blue No 1 (brilliant blue), Blue No 2 (indigotine), Green No 3 (fast green), Red No 40 (allura red) Red No 3 (erythrosine), Yellow No 5 (tartrazine), Yellow No 6 (sunset yellow)

Artificial Flavors: Monosodium glutamate (MSG), disodium inosinate, disodium guanylate.

Preservatives: Butylated hydroxyanisole (BHA), Butylated hydroxytoluene (BHT)

Artificial Sweeteners: Saccharin (Sweet'N Low), sucralose (Splenda), aspartame (NutraSweet and Equal)

Refined Sugar: Sugar, corn syrup, high fructose corn syrup (HFCS)

Fat: Trans fat, partially hydrogenated oils

Ok so this is a very heavy step just to start with. Just for fun go into your pantry and put some items that may have one or more of these ingredients and you will get an idea of the things we buy regularly that may have an effect on our Nemi... basically everything except the olive oil.

We have a long road ahead, but we are excited and looking forward to it. We just ran out of bread and today I will buy autism appropriate bread and I am excited... weird... who am I becoming with all this talk about health food. I am the queen of junk food... ok well, we are going down this road and not looking back.

Mommy's Healing from Autism

Last week I went to the library and rented out the book Louder than Words, by Jenny McCarthy. I had heard of the book several times in the past, but this day I felt an urgency to get it.

From the moment I got in my car with the stinking book, I began to choke and tear up. That day I read only the introduction and the preface in the car and cried my eyes out. I told Kimani, "I think this is gonna be a hard book for me to read." So I waited until after mother's day weekend to read the rest of it.

Monday after work, I began to read it and I was completely consumed from page one. By the time I got half way through the book I was sobbing uncontrollably from the depth of my soul. It was about 2 in the morning and I was trying not to wake up Kimani, but I could not hold in the tears and the waterfall was coming strong.

I cried for a long while. Kimani held me tight and prayed for me that I may fall asleep and I had to literally force myself to sleep. As long as I was awake I was crying. I felt all the years of pain rushing out of me. I had been holding back these tears for five years and through this book I felt release.

For so long, I did not allow myself to feel sorry for myself nor for Nemi. I always treated him like a 'typical' boy because I believe one day he would be.

From the moment I realized my boy was a bit delayed I tried to fight off my anger, towards the world; the doctors for their slow diagnosis; myself for giving him the damn vaccines; at him for not snapping out if it and even God for making my perfect boy Nemi go through all this. Everyone was to blame, but I held it all in.

I have always hated that I could not freely visit with friends or family because of how at times he is treated, or how unconsciously they look at him with sad, pitiful eyes. I still hate it, but never dealt with it. He is hyper and he tends to break everything he holds on to, so when I go visit people I think I may have to replace something expensive, I hope he does not break anything.

I hate the way I felt at the end of the day. Putting him to bed at times was the best part of my day and I thought I was being such a horrible Mommy. But dealing with an autistic child all day long wears on you. I was getting more and more tired and more impatient.

I never thought I would be such an 'angry beast' with my kids (or anyone at all for that matter), and be so stinking loud and such a screamer and lashing out with spankings left and right for all kinds of things. I hate that Datnee - I hated myself everytime I did it, but did not know how to stop. After pleading with the Lord to help me stop, I now understand why. I was not dealing with my emotioal health and it was all coming out the gaping whole in my heart.

This book gave me words to express the hurt I have been feeling. It gave me freedom to love Nemi where he is and not look to 'fix' him into a 'typical' child. I love Nemi with all my heart, but I felt like this autism has stolen a freedom in our relationship that now I realize I could still have.

This book allowed me to get rid of the emotional weight I had been carrying for the past 5 years and know that I need to gird up my loins and continue the fight for my boy.

It opened my eyes to know that though Nemi has been improving by leaps and bounds I had the blinders on because of his progress. I was so proud of him, I was slacking off a bit. I thought that with therapy alone he would get to where he needs to be, but I was fooling myself and the Lord had to open my eyes.

The next morning I was ready to stay in bed all day since every time I opened my eyes I would cry. It was about 12:30pm when Kimani came home for lunch and I was still in bed. When I saw him walk in the bedroom I felt like he actually picked me up and peeled me off the bed. It was so great to see him. I was planning to be in bed all day long if it meant that I would not be awake long enough to cry. He came in and gave me the strength I needed to get up and continue my day. Even better he told me he took the rest of the day off because he felt in his heart I was not well and I needed him for more than a half hour... Now that is God at work...

I wanted to just lay in his arms and cry some more, but I held it all in and we went to Barnes & Noble and got a couple of books on the Gluten/Casin free diet and we decided we are all going to switch over to this diet. Our boy needs something more than all the wonderful therapy he is getting and the Lord is waking me up to take the next steps.

For Nemi, I believe deep down that his current diet is not helping him get to the next level just yet. So we are surrendering it all to the Lord and believe He is going to give us the strength, taste buds and resources to switch over to this diet for our Nemi.

Here is the next battle to fight in order to win the war. I feel strong, I feel restored. God has been good and we are ready to keep moving forward. Keep praying for us, we wait for nothing less than a miracle.

Nehemiah James. We love you with all our hearts, and Mommy and Daddy are going to keep doing what ever it takes to help you get better, just like you pray every night. Jesus is hearing your prayers and He is going to answer them.

Nemi's School Project

Nehemiah was given a school project back in March to read four books on sports and fill out a quick form regarding the story and they would get to go to a baseball game for free, with a picnic and a parade.

Easy, right?

The project was due today, April 15th.

Great, I have some time to do it.

Well, Mommy waited until yesterday (the 14th) to do this little project... of course.

I literally ran to the library, 25 minutes before having to be at the school to pick him up mind you; finally got my library card; told the librarian to give me any 4 books on sports and ran off to school for a meeting.

Later on that night, right before putting him to bed mind you, I am literally speed reading through the books and filling out the forms.

Sheesh!! I certainly hope Nehemiah does not pick up on my bad habits of procrastination.

Well, the good thing is that we got the project in on time and we will all get to go out on a family night to a baseball game, attend a picnic and participate in a parade. I hope it was all worth it.

Nemi-isms

Nemi has been announcing everything that goes on regarding his body. If he bumps into something he will say, "I got an ouchie - my elbow (or where ever)".

Lately he also announces his contribution to the environment. When he passes gas he will say, "I farted."
I say, "oh Ok, say excuse me."
he says, "out my butt!"
"ok Nemi, we get it. Say excuse me"
"'cuse me!"

It cracks me up. I just hope he does not go into so much detail when we are out. I do not think other people will find it as cute as we do.