Good News!

Okay, it's been a long time since I last updated, and there's so much to catch up on!

First off, Nicholas did heal from the mysterious sickness that pretty much sent his immune system down a long spiral. Until about 2 weeks ago, he was still suffering from daily bouts of diarrhea that would burn his bottom (obvious food allergy) and make his tummy hurt. I eliminated the loads of sugar he was getting through juices from his diet and it eventually subsided. He has since regained about 3 lbs. and is eating regularly and doing great.

However, after his sickness subsided, his diet changed from GF/CF to eating anything within healthy perimeters. Since then, we have noticed some of the OCD traits return and some hyperactivity. But, the wonderful news is that we have found a DAN! doctor in Savannah! Yay!! If you don't know what a DAN! doctor is, you can find out more at www.talkaboutcuringaustism.org. They are doctors, mostly pediatricians (as in our case), that have undergone extensive training in biomedical approaches to healing autism and have implemented these changes into their practice. Our first appt. was this past Thursday and I got to sit and talk with one of the mother's that volunteers to inform parents of the procedures and processes that will be taken in an effort to reverse the effects of Autism in our child's body. We will be doing tests to find out what foods Nicholas is allergic to, what parasites he has, how much yeast is in his body, what bacterias are present, and any viral issues that may be going on. They also test for heavy metal toxicity and amino acids. This is done through urine, hair, and blood samples. We are SO ready for this!!! No more eliminating foods and hoping to find the one that makes him snap. We'll know for sure what his body is, and is not, processing correctly. I could NOT be more excited about this!! They gave me a little kit to have Nicholas urinate in, and we have to send it off for our first round of tests. I will be posting those results soon!

Other happening news:

Nicholas has started swimming lessons and is loving it! The first day was interesting. He was deathly afraid of the water and kept giving me sad faces the whole time. However, as you can see in the pictures, by the next lesson, he was ready to go! His instructor is AMAZING and I explained Nicholas' difficulties to her ahead of time and she really understood. I can tell he trusts her now to put him in the water, which is a bid deal. For Nicholas, being in water is like being in space with no concept of where your body is. It feels to him like his arms and legs have suddenly disappeared and he can't figure out where they went. However, this is a great exercise for him to learn how to strengthen those concepts and gain better motor skills over all. He's having a blast! We have one lesson to go and he's doing great!

We have also set up a therapeutic play-room for Nicholas. This room is entirely designed to strengthen different areas that Nicholas is lacking in; such as motor skills, imaginary play, and sensory specific areas. It is such a peaceful time to be in there with him and it's amazing to see his progress when we come out. Yesterday, as he was swinging, he started to point out all the alphabet on the wall where I had put them up. He's never identified letters before and I started asking him where "A" was, and where "D" was, and he knew! His therapist told me that when he's doing something that gives him the sensory input his body is craving, his brain will start making more connections. It's remarkable to watch!

Thanks to everyone for prayers and I will update more often; especially with tests results and procedures we'll be undergoing to kick Autism out of our lives!! :0)

Life is SO unpredictable!

As some of you may have heard, our little Nicholas is very ill. We aren't sure exactly why, but it all started on Tuesday evening around 7 pm. We were just relaxing as Nicholas played in the floor, he then stood up, grabbed his tummy, and vomited everywhere. That was the first of approximately 20 times he would vomit that night. Around midnight, we took him to the ER where they gave him something for nausea that pretty much sent him into a deep sleep. After an hour of him sleeping soundly in the hospital bed, they sent us home saying to offer him liquids when he awoke.

Nicholas continued to vomit throughout the night until he was simply heaving without anything actually coming out (dry heaves). He wasn't even able to keep down a teaspoon of water and at 9 am on Wednesday, after about 20 hours of vomiting every 10 minutes, we took him back to the ER. This time, he was severely dehydrated. His eyes were very sunken in and his mouth was coated with a white substance. He could not stand up or hold his head up and was completely lethargic. Fortunately, they hooked him up to an IV right away and pumped necessary fluids back into his little body. Four hours later, and the color had finally returned in his cheeks and he was begging to drink water. The doctor only allowed him ice chips, but he ate them like they were the best things he'd ever tasted. We were sent home and told to let this run its course.

Nicholas has not vomited since the hospital stay (thank God!) but has since developed a fever of about 103 and constant diarrhea. He is still very lethargic and his appetite hasn't really returned.
Please keep him in your prayers as it is so hard to see your little one sick (as any mommy knows) and even harder when they can't really communicate to you what they're feeling. I am assuming this is either food poisoning or some sort of stomach flu, but we don't know for sure. Just please pray it passes quickly.

I intended to write about Nicholas first swimming lessons that were lined up for this week as well as the strides he is making with therapy. That, for now, will have to wait until he's feeling well enough to resume those activities.

Thanks for reading and for your prayers.


xoxo,
tacamama

Very Interesting...

So...I guess I managed to let a whole month slip by without posting and there's lots of catching up to do. Thanks for all those who visit this blog. Please don't give up on me...I'll write more often...I promise!

When I last wrote, Nicholas had just begun therapy and we were super excited about the progress he was already making. He has now been in O/T (Occupational Therapy) for a little over 2 months now and S/T (Speech Therapy) for about 3 weeks. The results have been nothing short of stunning. For starters, my son, the pickiest eater I have ever known...who had never in his life chewed and swallowed a piece of fruit, picked up an apple this morning and casually began to eat it; just as though he'd been eating them all along. He took big crunchy bites and between mouthfuls, rubbed his tummy and said "hmmmm...apples are great!". Now, for most, seeing your child eat an apple is no bigger deal than seeing them pick their noses. But for me, my heart almost burst with pride. He's been working on fruits and veggies with his dear OT therapist, Ms. N, and apparently, it's paying off.

As for his obsessive compulsive behavior, which had become so extreme, we had to wait for him to let us know exactly what to do for fear that we'd make the wrong move. For instance...if I walked in a room with him and casually flipped the light switch, he'd lose it. I would stand there in bewilderment trying to figure out what I did wrong and he'd be screaming like crazy. Finally, we figured out that he was the only one allowed to turn lights on when he walked into a room with us. This and many other OCD behaviors plagued our days. Now, though some traces of that remain, we can do things without worrying about a tantrum following or without him needing to control the environment to such an extreme degree.

Other improvements? Well...the kid that hated toothbrushes now brushes his own teeth...with an electric toothbrush! Something he always feared just from the simple noise it made...forget the sensation of how it felt in his mouth. Now he bears those pearly whites and brushes away. Hair brushing is no big deal...he's wearing flip flops now (used to despise them), dresses himself for the most part (with minimal help), and as I stated before, is eating all sorts of new foods.

As for his speech...well, his therapist came to me just about 3 days ago and said, "we're going to have to change Nicholas' goals we set for him. He's already reached them all". This is only after 3 weeks! I was so elated. I could tell he was talking better (and more!), but to hear someone validate the progress you see in your child is an amazing feeling. He's putting 5, 6, and 7 word sentences together with no problem. He's participating in spontaneous speech and answers "yes" and "no" questions appropriately about 75% of the time. Today he opened up his snack drawer in the kitchen, came over to me and said, "hmmm...that's interesting...". Without trying to smile too big, I said "what's interesting?". He said, "I can't find the fruit snacks". I had to laugh out loud and of course, now he thinks saying "I can't find the fruit snacks" is the best punchline to the funniest joke ever and has said it about 20 more times! I don't care...so long as he's talking, he can repeat it as many times as he likes!

So all is going well with Nicholas; very well indeed. We are so blessed for the improvements Nicholas has made so far. We can say for certain that God smiles down on Nicholas. My sister, Latrelle, has this thing she always says when God works things out for her in ways only He can. She says "God sure does love me!" That's how I feel when I see Nicholas' progress..."God sure does love him!".

As I read back over the improvements I've noted, I can't help but wonder if what I notice is a little bias. By that, I mean, if someone else were to write the things they've seen Nicholas improve in, would they focus on hygiene and eating properly? Perhaps these are those things Mommies feel so responsible for instilling in our children. If they grow up healthy and clean...then we've done a good job. Perhaps that's somewhat true, but we all know the importance of fitting into society in the best possible way we can. If I can help him accomplish those things that give him a greater edge or a better advantage in his life, then I'm all there. I'll be his coach and his cheerleader in this game of life while he is with me. Because one day...I'll have to send him out into the world alone, and so long as I know he's equipped to win...I will worry a little less.

The Sweet Taste of Success

Thursday was Nicholas' official meeting to discuss his treatment plan since his evaluation a couple of weeks ago with his occupational therapist. I sat nervously with the most genuine smile I could muster plastered to my face as I listened to her explain that Nicholas, developmentally, functions on the same level as a 13 month old baby. Aside from his speech therapy, Nicholas will attend OT 3 times a week for the next year. There is a waiting list for speech therapy so we will not be able to start until the end of April.

Not that this was the best news I'd received lately, but there is something so rewarding that comes with knowing you are throwing your heart and soul into helping your child...and it's paying off. What was also remarkably refreshing was the therapist's reaction to the differences in Nicholas' speech and behavior since evaluating him just 2 weeks prior. As she handed him crayons and paper to occupy himself during the meeting, he politely replied "wow, thank you so much!". He sat patiently and colored his paper as we talked and interrupted only to ask "mommy, can I have a snack?". As the meeting was coming to an end, Ms. N (the therapist) says she notices that Nicholas is talking better and behaving more calmly. I simply explain to her that he's been on a gluten free casein free diet for the past month. She smiles and says...well he's doing great.

So...our journey continues and my appreciation for the knowledge that improves the quality of life for autistic children deepens. As I throw myself deeper into the GFCF world, I realize how incredible the results can be. This morning, as I was getting out of bed, Nicholas says "hey mommy, what about pancakes?" I smiled and said, okay, let's go. As we walked downstairs he looked down and exclaimed, "mommy, where's your shoes?" I give myself a mental high five!

Tonight I made GFCF pizza with mozerella cheese and a crispy crust. For dessert? Soft, warm, chewy, chocolate chip cookies with sprinkles (completely GFCF). Nicholas was in heaven.

Continue to pray for us as we continue our journey. We are so appreciative of all those who have offered support.

God bless.

xoxo

My son...an addict?

Sometimes we learn our most important life lessons in our most difficult times. Today offered up such an opportunity. As I mentioned previously, we have only just begun our journey towards healing for Nicholas and though the road ahead will not be easy, I am committed to seeing him through. However, knowing something will not be easy, and experiencing the difficulties that present themselves are completely different things.

One week ago Nicholas began a diet that has shown miraculous results for children with Autism Spectrum Disorders. A diet free of gluten and casein offers promising results for these children and many parents report marked improvement in just a matter of days. We, too, thought we had such a testimony to give. We have been slowly eliminating the gluten and casein from Nicholas' diet and for the first five days, things seemed to improve greatly. He was behaving in a more calm manner and having less tantrums.

However, the hand of God was already at work. Just yesterday I found myself in Barnes and Noble looking for a cook book that would open the doors of this diet a little wider for me so that I could continue to ease Nicholas into this GFCF (gluten free, casein free) world. I picked out a book titled, The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet: What it is, Why it works, How to do it (long title, huh?). Already feeling a surge of confidence from the improvements Nicholas already displayed, I felt I already had a good handle on this whole GFCF thing; all I needed was a recipe or two and we'd be set! Right? Wrong!

Within the first few pages, I read why these precious children have to begin such a diet in the first place. Though Nicholas had already started, this was only due to the results I'd read from other parents. I must admit my ignorance in saying that I didn't know exactly why they needed it in the first place. As I read the words, my heart broke into a million pieces. I learned that my little boy, my precious son, is as addicted to the types of foods he eats as someone who abuses opiate type drugs such as morphine. I also learned that casein and gluten are the most common foods to have this opiate effect. These foods act like a morphine to the autistic child's brain, dulling pain receptors (no wonder he doesn't cry when he gets hurt), causing social withdrawal, and damaging the speech and auditory processing units of the brain.

The saddest part is that when taken off such foods, these children will go through withdrawal symptoms (ranging from irritability to rage) eerily similar to those experienced by morphine abusers. Such symptoms are runny nose, diarrhea, headache, nausea, kicking movements, muscle spasms, and chills.

My first thought was, "thank God Nicholas isn't going through that". Yet, God was preparing me. Today, Nicholas exhibited almost every symptom of withdrawal experienced by morphine abusers. All I could do was pray for my little boy as I watched him cry for no apparent reason. In that moment, I could not understand what he was going through and my patience was wearing thin. However, the ache in my heart grew stronger as I realized what was happening. It is the saddest thing you can imagine.

Nicholas insisted on going to bed early tonight and after just a few minutes, I went upstairs to give him more kisses and tell him how much mommy loves him. Yet...he was already sleeping. I can only imagine that his little body is trying to recover and regain strength to continue this journey. I now know that getting Nicholas gluten and casein free is vital. I only pray that his pain goes away quickly so that we can get to the other side of this leg of the journey.

Please pray for us.

God Bless.

xoxo

Why Kiss Hugs?

My son Nicholas...my sweet little baby boy (well, I say baby, but he's actually 3 years old) was diagnosed with Austism Spectrum Disorder/Sensory Processing Disorder very recently. I knew about Autism. I'd read the books, done the research, and felt fully prepared to debunk any notion of him having anything remotely related to Autism. Yes, my motherly instinct told me something wasn't quite right...but Autism? I didn't consider myself a mother in denial until I heard that official diagnosis.

Nicholas always makes eye contact, gives more hugs than I can count in a day, tells me he loves me, and has never been shy. I never imagined that the way he liked to line or stack his toys, the way he'd only observe other children playing rather than joining in, or the clear inability for others to understand his language was related to Autism. The frequent tantrums, the inability to understand logic, and his complete lack of interest in every single toy he owns were all signs I missed somehow.

However, here we are on this journey. I, like many mothers, believe Autism is treatable and can be reversed. We have only begun our journey towards healing, but already I see changes in my beautiful son. Just today, we had a whole conversation about his dog, Davidson. He told me how Davidson likes to chew on his toys and I told him I would "spank Davidson's little tail" if he didn't stop. His big smile and silly laughs let me know that he knew I was just joking. This is a small, but substantial milestone.

This blog is being created to keep family and friends updated on Nicholas' progress as we continue this journey towards healing. The name...Kiss Hugs, is very fitting. Every night when I tuck Nicholas in for bed, I can walk about two steps before I hear "Mommy...kiss hug!" A kiss hug is when I kiss Nicholas all over his little face and give him a big squeeze that always makes him laugh so hard...sometimes he gets hiccups. It's become my most treasured part of the day and I soak it in with all my might. Just as I soak in those precious moments, I am soaking in every bit of information I can that will improve the quality of Nicholas' life. I am so grateful for those in my life (and you all know who you are) that have supported, and continue to support, all my efforts on this journey.

Please check back for updates on Nicholas. I will post very soon.

God bless.

xoxo