Melissa's MOMents

I’ve been thinking a lot today about the saying “choose your battles,” especially when it comes to raising my children. Raising a child with Autism, and all that entails, brings new meaning for me, to that saying.

Unfortunately my husband and I have often choosen to ‘take turns’ going out to public places such as stores and our other children’s school and sports activities, if only to save ourselves from the exhaustion that inevitably comes with managing Aidan’s meltdowns during such activities. Sometimes though we get brave and go out as a family or even venture to take our little guy with us to the store.

Last week while my husband and daughter were away for a few days, I guess I was feeling brave, and decided to go out to a nearby bargain outlet store with Miccah and Aidan. Yes, this was the day that I lost the battle. Now as many parents of children with Autism can attest to, transitioning to new places and activities can be very hard on our little sweeties (and on us). I had maybe 5 small items in my cart by the time that the battle erupted. Trying to stay calm (which admittedly I’m not always very good at), I decided that we needed to check out and leave the store before the meltdown got worse. Well, I decided a bit too late. We got to the check-out line, which was backed up into the store and by this time my own physical pain was screaming out at me even louder than Aidan’s screaming, because I was desperately trying to hold onto my 33 pound 2yr old while he was hitting me repeatedly and trying to throw himself from my arms. Putting him down was asking for trouble too, because I knew all too well that he would either throw himself limp when I tried to walk with him, or he would bolt…so…I left the cart with my items still in it, right there in the check-out line. Ugh, DEFEAT! AND it didn’t end there-I still had to make it back to our car with Aidan still in meltdown mode and my 6yr old almost in tears.

I lost the battle that day, but I refused to lose the war. I went back to that same store a few days later, just me and my two boys again, but this time I had my “weapon-of-choice” the WAGON. God bless my mother and father for getting that wagon for Aidan for his birthday a few weeks ago! I’m happy to say that I made it all the way through the store, the check-out line (which was much shorter that time), and 3 more stores right after the first! VICTORY!!!

I guess winning the war against Autism and the many many small battles it often presents, just takes Patience, Perseverance, Prayer, and Lots and Lots and Lots of LOVE!

I really cannot believe that it has been over a month since my last post. WOW, time flies when you’re having fun! So much has happened over the past four weeks, but I’ll save some of that for later posts.

We finally figured out a way to get Aidan to take his B(lessing) vitamins (“Spectrum Awakening” supplement) on a more or less daily basis, and the results have been astonishing! We have heard so many new words and seen a dramatic increase in sign language from our little guy just over the last few weeks. Here is some of what we’ve heard and seen: “Oh Wow! Clues (for Blues Clues-his favorite show), Color, Juice, Kitty Cat, Us (for “up”), and STICKERS!” signs for “Eat, More, Again, Bird, Dog, Cat, Mom, Water, Milk, Airplane, Car, Sign, and Please.”

Aidan has also developed a passion for drawing and coloring, and it has the added benefit of calming him when he is overstimulated and/or upset. Somehow we also discovered that Aidan also LOVES stickers. The wonderful thing about the stickers is that we have been able to use them as a teaching tool also! Multiple times each day, we draw/color with our little guy and also offer stickers to him by giving him a choice between “this one, or this one (while making a point of POINTING).” In order to get a sticker, he needs to make a choice and point to it. He has worked his way up from multiple finger “pointing,” to first finger only pointing, AND sometimes we even here a quiet “this” from him while he points! Any of you who struggle to help your child on the spectrum, learn in a fun and positive way, know what a HUGE accomplishment pointing is!!!

I want to also send out a big THANK YOU to all of my faithful and patient blog followers Come back in a few days to see if I’ve got some new, fun posts!

Weighing heavily on my heart lately is the lack of advocacy provided by health care professionals for their patients. I think it is rather disgusting that health care has become more of a business than a service. As a registered nurse myself, I would have to say that I take more pride in the spiritual/relational affect that I’ve had on my patients, than the number of IV’s I got on my first try or even the number of lives I have saved. What is so very infuriating to me is the fact that our population in general is so mis-informed or uneducated on subjects related to their own, or their family’s health. Do I blame them for this? Absolutely not! Do I think that their voices can and should be heard? ABSOLUTELY!

We need to learn to be more assertive, educate ourselves, be our own (and our family’s) advocate, and be more involved in our care! But why? Aren’t physicians (and other health care professionals) trained to do these things for us? Not necessarily. Unfortunately, individuals, and especially parents are far surpassing their physician’s knowledge on the most current research and treatment options available. So what is the problem then if these individuals have gained all of this invaluable knowledge? They’re not asking for it, or they’re too afraid to present ideas to their health care provider, because the door has been slammed in their face one too many times in the past.

My own experience, just as a mother and patient myself, has been an extremely enlightening one, and I’m sure it will continue to be…My daughter (age 7 at the time) suffered for months because her health care team refused to believe that she didn’t just have “constipation,” and refused her a simple CT scan. Knocking on death’s door, low and behold, a CT scan found that she had a very rare abdominal tumor. I suffered for 2 years with tremendous pain, being told that I needed to see a psychologist because it was “all in my head.” AND low and behold, after begging for a simple blood test, I was diagnosed with a very painful Autoimmune Arthritic condition called Ankylosing Spondylitis. My otherwise generally healthy toddler completely lost his speech at 15/16 months of age, and after hearing “boys talk later, and he seems fine to me” one too many times, low and behold, he has Autism.

You know yourself and your children/family better than any practitioner who maybe spends 10 to 15 minutes at a time with you! Educate yourself, be confident, ask questions, and know your rights! Are you one of those people who throws out (without even looking at them) those annoying privacy/HIPPA and patient rights papers that you’re handed when you have to visit the doctor’s office, or God forbid, the ER? I am too-guilty as charged. But do you know your rights? I am no activist by any means, but I believe that we have a right to know, a right to be educated, and a right to be involved in our own care. Educate yourself! Be involved as much as possible! AND know that YOU are your own (and your family’s) MOST VALUABLE advocate!

The American Hospital Association developed the Patient Bill of Rights in 1973. Click on this link to review your 12 Rights: http://www.patienttalk.info/AHA-Patient_Bill_of_Rights.htm

Our son who is now 23 months old, stopped speaking about 6 months ago. This was actually the first thing that happened that made me suspicious of an Autism diagnosis (which he did recieve in February 2010). My heart just aches for my beautiful boy when I see the frustration in his eyes that is undoubtably related to his inability to communicate in the way he would like to. Recently though, our hope for finding a way to help Aidan communicate, was renewed. I revisited the possibility of teaching him American Sign Language.

As a child myself, I learned a fair amount of the language because of a family friend whose son is deaf. I have ALWAYS been so very intrigued by learning languages, and ASL is no exception. I had briefly tried to initiate some sign language skills with Aidan when he first lost his speech, but was disappointed in his frustration with that form of communication also. Aidan began receiving speech therapy through a local agency around this same time, but showed the same communication frustrations when his therapist tried to “push him” to learn the PECS system (Picture Exchange Communication System). I had given up too easily with teaching Aidan ASL, as was made very obvious to me when I made another attempt with it around the time that he received his diagnosis (of Autism).

Our family friend recommended the Signing Time series. Right away I picked up some of the DVD’s from our library, and anxiously popped one in the player. On the “My First Signs” DVD, the very first sign that they teach the viewer is “Eat.” Aidan immediately copied that very first sign, the very first time! Oh, what a glimpse of hope can do for a mother who is parenting a child with Autism! We have learned to take GREAT JOY in even the smallest of accomplishments. Well, Aidan went on to copy a few of the other signs from that first DVD…and Mommy went on to the Signing Time website, bought that DVD, and requested about 5 others from the library.

As I said, we started teaching Aidan ASL in February, and I am happy to report that he has a large handful of signs that he uses on a regular basis! Those signs include: more, please, bird, cat, dog, mommy, daddy, eat/food, milk, all done, water, ball, again, and THE CUTEST attempts ever made, to fingerspell!

Not only has Aidan found a way to communicate, but it is INCREASING his verbal skills also! He loves to watch the other children on the Signing Time DVDs, and can often be seen mouthing letter or word sounds. Very recently, he has occasionally suprised us with a verbal word or 2! I highly recommend the Signing Time series of DVDs. They also have wonderful board books and flash cards. I am EXTREMELY enthusiastic about the possibility of becoming an instructor with the Signing Time Academy. Hopefully once we can get some things straightened out, I will be able to offer classes and workshops as a certified instructor, to local families of all walks, and ABILITIES! HAPPY SIGNING!

Many people, health care professionals and parents alike question the affects of diet on Autism. My thought on this is: they question it because they have not seen the results first hand. This diet is not only beneficial for children dealing with ADS’s, but also for others who may be dealing with, for example, a chronic autoimmune condition. I questioned it too at first, but we have stuck with it for the last 3 to 4 months and I for one and not turning back now.

Here are my 10 tips for starting the diet:

1. Inform your child’s pediatrician and/or your family doctor, that you plan on starting the diet. Notice I did not say “ask them if you should start the diet.” Unless you have a DAN! doc for your child, or a really open-minded family physician, they are probably not going to be supportive. DO NOT let them scare you off. Your child (or you) will NOT starve or be malnourished on this diet if you educate yourself, and ensure that they or you are getting all that you need to maintain good health.

2. Consult with a Certified Nutritionist or Holistic Provider. This can be costly, but it is well worth it in order to ensure that you are implementing the diet properly and that you and/or your child stay healthy.

3. Get a good GFCF cookbook…or 2! I have some links here to some really good ones. My favorites are Special Diets for Special Kids by Lisa Lewis, and The Everything Guide to Cooking for Children with Autism by Megan Hart and Kim Lutz.

4. READ LABELS!!! Just because it says “Gluten Free” on the box, does not necessarily mean that it is. Some things to avoid are:

Artificial colors
Malt, barley malt
Sauce mixes
Spelt
Aluminum compounds
Aspartame
BHA, BHT
MSG
Nitrates, Nitrites
Potassium Bromate
Quinine
Sulfites
Dextrin
*There are some other things to avoid of course, but these are some of the most common ones that you’ll see on labels

5. Do not Fear-your child, even if an extremely picky eater (as is very common with ASD’s) will not starve. There are plenty of kid-friendly options/substitutes out there. It may take a little bit of time and trial and error to find these things but there are options!

6. Stick to it! Don’t give up after one week on the diet just because it’s too hard or you haven’t seen results yet. Allow your or your childs body at least a few months to rid itself of the buildup of “bad stuff” in your system.

7. DO NOT CHEAT! Of course you’re probably going to mess something up here or there at first, but sticking to the diet exactly is the only way to see results.

8. Find what works for you and/or your child and stick to those things. We really don’t NEED huge variety in our diets, as long as we are getting what we need. My son basically eats the same handful of things, and he DOES eat and he DOES get what he needs. Our pediatrician warned us that he would become malnourished…he has gained 3 pounds since starting the diet and his blood work (showing his nutritional status) is perfect!

9. Know that there are still some REALLY tasty treats that you can find (and make) and eat all you want (well still moderation is always best) on this diet! I eat chocolate donuts (Kinnikinick brand) and chocolate ice cream (coconut milk- So Delicious Dairy Free) AND I’ve lost 12 pounds already!

10. Don’t lose hope, and don’t compare yourself or your child too strictly to others who have had DRAMATIC and IMMEDIATE results on the diet. Remember that we are individuals and therefore our bodies react differently to things. I am in no way, shape, or form claiming that everyone that tries this will see major results, but at least give it enough time to prove or disprove itself.

*********PLEASE NOTE that these tips are in no way meant to be taken as medical advice, and should never be a substitute or replacement for advice and treatment from your physician. I only want to share our family’s experience with others, and offer myself/my experiences as a resource for others.********************

Please feel free to share your tips and experiences with the GFCF diet too. I am still learning also, and very much welcome your thoughts and advice!

What do you do when your expectations and dreams for your beautiful child are suddenly turned upside down? What do you do when your child suddenly stops achieving or even exceeding those typical milestones that every parent seems to worry so much about? I know what I did-I found new hope, took (and continue to take) great joy in even the simplest achievements, and I love him all the more!

I am SO VERY proud of all 3 of my children, but today I got to thinking more about how my perspective has changed so drastically over the last six months. I really can’t believe that it has been six months since Aidan lost all of his verbal communication/speech. We find such joy in his simplest accomplishments, even if they only happen one time and then we don’t see or hear it again for weeks or even months!

Aidan said “Oh Wow!” today when I gave him his snack. He then brought me a book and said “P L E A S E.” That is so HUGE for him! Now, we probably won’t hear either of those things again for awhile, but OH WOW-I was so excited! I startled him because I was clapping, and screaming, and laughing! Made my day!

Recipe for Nut Butter Balls (or as I like to call them “Peanut Butter Stickies”)

In a mixing bowl combine:

1 cup of nut butter (we use the Wegman’s brand organic peanut butter)
1/2 cup of honey (we use organic clover honey)
1/2 to 3/4 cup of DariFree powder (this can be found at most natural or specialty food stores & runs about $10 for a lg canister)

Combine with hands until you have a soft dough. You can add more DariFree powder if the dough is too oily or sticky (I usually do have to add more). Roll into 1 inch balls and/or flatten into a cookie shape. I usually sprinkle almond pieces on top or you can sprinkle them with coconut, as Karyn suggests. Anything that suits you or just leave them without a topping. I put them on a thin metal cookie sheet and flash freeze them and then keep them refrigerated to maintain their formed consistency.

*** other substitutes can be made for the peanut butter such as: sunflower nut butter, “pea” nut butter, cashew nut butter, almond nut butter, etc.

***you can also substitute agave nectar (which I LOVE in my tea) for honey if you are supposed to be watching/eliminating sugar intake. Agave nectar is a natural, low glycemic index sweetener which can be found at most natural or specialty food stores. I buy mine from Wegmans and it runs about $10 for a lg plastic bottle.

These “Peanut Butter Stickies” are SO yummy! All three of my children, and I myself love them! They’re difficult to keep stocked in our house

Back in August/September of 2009, we watched our beautiful little boy (about 15 months at that time) change in ways no parent ever expects or dreams of for their child. Our son’s speech didn’t just regress, it completely disappeared within at most, a week or two. I say that it was like he woke up one morning and it (his speech) was all gone. That’s how I remember it, or at least that’s what it felt like. Along with our darling boys loss of speech, came incredible frustrations from both sides. His behaviors began to change because he no longer had 30+ words, and even some short phrases in his vocabulary, that he could use to communicate his needs and wants. We could see the pain and frustration in his eyes and his actions, and so our frustrations came as a result of feeling at a loss for how to explain what was happening, and not knowing how to help him.

Of course being the nurse that I am, I immediately began searching for answers. I pieced together my own experiences working as a nurse, researching information on trusted internet sites, and listening to experiences from family and friends. What I came up with in a very short time, due to my desperate desire to help our baby boy, was one of those “four letter words,” AUTISM (okay, that’s six letters but just as scary and “bad” all the same). With our little one being only about 16 months by the time I had more or less decided that this was what was going on with him, my ideas and opinions were often met with others’ expressions of doubt and disbelief. Keeping this diagnosis in the back of my mind for what seemed like forever, we kept on researching and accessing all the help and therapies that were made available to him at that time.

I think the confirmation came for me in December of 2009 when my husband brought home a book for me to read, that a colleague of his thought might be of interest to me. The book is called Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi. I kind of guessed what it might be about, without even opening it, and therefore was very skeptical. I had heard about/seen stories of parents trying to treat their child’s condition(s) naturally and/or claiming that vaccinations caused their child’s condition, and at that time I had very little interest in finding out more about these things. Within a few days of recieving the borrowed book, I had opened it, started it, and could not put it down. I know many of you are probably thinking “Sure I experience that with any good romance novel, etc.” BUT no-even reading the introductory pages of Karyn’s book, for me was like looking in a mirror. I could not believe the similarities between the author’s experience with her son Miles, and our experience with our son. Much of the book is based on solving the Autism mystery or puzzle (as the Autism cause ribbon portrays) through biomedical interventions and treatments.

One of the main things that Karyn Seroussi discusses in her book is the link between diet/food allergies and Autism, or the “Brain-Gut Link.” How could I have missed this with our youngest son? Not that I would have known at the time to link it to a possible ASD, but we definitely knew that our little guy had trouble with foods in the past. When he was a baby baby a friend suggested to me that maybe his ‘colic’ wasn’t really colic at all, but a dairy sensitivity. I ended up cutting out all dairy from MY diet for about 8 months (while breastfeeding) and the changes we saw in him were dramatic and reinforced my friends’ suggestion. Now, we were told by many people (including our pediatrician) that kids often out-grow dairy sensitivities (as we thought was the case too with our older son). So, after our baby boy turned 1, we began reintroducing dairy back into his diet in the form of cheese, butter, yogurt, etc…and within a few short months, we had met our enemy face-to-face–Autism.

Parenting a child with Autism is challenging in itself, but add to the mix implementing strict dietary changes for an already (abnormally) picky toddler, and you’ve got a whole new ball game really. By way of Karyn’s inspirational examples and advice outlined in her book, we decided to cut out dairy from our son’s diet (again) in December. In January 2010 we then removed gluten too. The results have varied (no doubt in large part b/c of our own trial and error and slip-ups from time to time), but overall the positive changes we have seen in him are remarkable! Remarkable enough that I decided to join him on the “diet journey” in hopes that it would help my autoimmune condition-Ankylosing Spondylitis. I already knew that the food allergies that both my boys were dealing with had come from my lovely genetics that I passed on to them. I will talk more about diet and autoimmune conditions in upcoming posts, but for now I’ll focus on how it relates to parenting a child with Autism.

Karyn’s book is not only an inspirational story, but also a wonderful guide, tool, and resource too. She advises on how to get started with dietary intervention, what changes to look for, how to grocery shop, and she even shares a few great GFCF recipes too, as well as other invaluable information. She also references some amazing internet-accesible resources, books and cookbooks, and various Autism related organizations, in the appendices at the back of her book. Some of those resources I have provided links to here on my blog. I would definitely recommend getting your own copy of her book, especially if this is something that is personally affecting you or your family’s life. I’m glad that her’s was the first book I read, and even more glad that I decided to read it in the first place.

Our sweet boy has made huge progress and improvements over the last few months. He was given an official diagnosis of moderate to severe Autism on February 18th, 2010 but that has not slowed him or us down one bit, if anything it encourages us all the more in our fight to help our beautiful child have the best life that he can. What a true joy he is too, all head slamming/banging, tantrums, and (still) lack of verbal communication aside, he has a smile and laugh that could warm anyone’s heart; and his sweet kisses and deep, purposeful stares (yes, EYE CONTACT achieved!) are one of the highlights of my days-EVERY DAY! We are also excited to share that we have stumbled across an amazing communication tool that he has been extremely receptive to: American Sign Language. I am so eager to share this tool with other families who are affected by ASD’s! Aidan may not be speaking again (yet) but he LOVES the Signing Time products (especially the DVD’s) and uses sign language on a consistent basis…and is learning more each day! He has and/or does sign “more, again, please, dog, bird, water, milk, all done, and food!”

There is HOPE for these children. We can make a difference! April is Autism Awareness Month. So little is still known or educationally provided by healthcare professionals, to affected families, on the subject of treatments and tools for Autistic children/persons. Please help raise awareness and if you are able, help raise money too, for one of the lowest funded research areas-yet one of the fastest growing childhood epidemics in the world today!  1 in 100 children are diagnosed with Autism, and 1 in 5 or 6 children are affected by some type/form of ASD, including diagnoses like ADD, PDD, and Asperger’s. Educate yourselves, educate others, educate healthcare professionals, and reach out to families and children affected by these conditions!

Well, I was hoping to kind of do an “Our Story” page before posting another blog entry, but it’s taking me a bit longer than I thought…I guess maybe sometimes I have too much to say. I’ll keep working on that. Speaking of having too much to say-I’m not exactly sure where I should start, though I fear that once I do start the ball rolling, I may never shut up! LOL! I suppose for today, I’ll just write more of a journal entry.

I’ve been enduring another bad flare-up with my AS over the past few days, though today it seems much improved…till next week I’m sure. *SIGH* Seems like the past 2 years have really just been one BIG, LONG flare-up. To make matters worse, the “maintenance dose” of Prednisone (steroid) that I’m on AGAIN does WONDERFUL things for my blood pressure (not really) and makes me jittery often. The Methotrexate (antimetabolite and antifolate/low-dose chemotherapy drug) continues to make my hair fall out in phases. Unfortunately along with my recent  flare-up came a “hair falling out phase.”

What My Lovies Are Up To:

Ken has an interview for a 1 year position, on April 6th! Please, if you remember, keep us in thought and prayer for this. My hubby also just finished another chapter for his dissertation. YAY-one chapter closer to being finished! He is working so hard, and we are so proud of him! He is working on updating his blog/website too. Check it out at www.anduril.ca

My daughter is in 4th grade (can’t believe it!) and has always had a love for reading. She recently got 4 short chapter books from the school’s book fair, and had ALL of them finished that same day She just started playing the flute this year at school, which is really neat b/c I played the flute also in school. Sometimes we play little duets together! I’m thinking that soon enough she will surpass me in skill She also participated in her school’s Reading Competition Group, and they had their competition this past Saturday and did very well! Great job “Peace Readers!”

My oldest son is in kindergarten and is doing very well! He is learning to read and seems to be somewhat of a math “whiz” like his mommy used to be. His class recently performed the entire national anthem in SIGN LANGUAGE at one of their school assemblies! WOW! They also get to go on a few field trips including going to a performance of “Frog and Toad” last week, and I believe they get to go to Red Lobster in the coming weeks to learn about how things work in the kitchen.

Our youngest, who is 22months and was recently diagnosed with Autism, is such a joy- even on bad days. He is very cuddly with Mommy and Daddy, and was making Mommy giggle over the weekend with wanting to give me a kiss every few minutes:-) I tell you, his smile could brighten anyone’s day. He’s Mommy’s little angel! Recently his therapies have been increased and expanded. He now gets speech therapy (as he lost all of his speech about 6months ago), occupational therapy, and has a behavioral/developmental teacher. He’s also on a waiting list for a TSS (also known as ”wrap around services”). He just recently started back to his preschool one half day per week, and we get to start a fun program at the library this Wednesday. We have been teaching him American Sign Language over the last little while, and he has really taken to it. He LOVES the Signing Time DVDs, and the rest of us are having fun learning too! I am now an affiliate for the Signing Time products (I think they are excellent), and will have links up to their main store soon. For now, I do have some links to amazon.com for a few of their products. I hope to actually become an instructor soon. Will post on that as things progress.

Well, I’ve now stayed up much too late, so I’ll close. Thank you to all of you who are following my new blog. I have lots of plans for great things to share, especially about parenting a child with Autism, and living with Ankylosing Spondylitis. Good Night!

My Beautiful Family

I am new to the blogging world, and I am so excited that I have an opportunity to share my family’s story with others, in hopes that at the end of the day I will have helped somebody out there. Each day I ask our Father for strength, patience, hope, and peace. Although some days I stumble, he has never denied me these things. He has blessed me so richly, with an amazing family to call my own. My husband is my true love, my rock, my strength and reassurance, my best friend…and I could go on and on and on…We have 3 beautiful and wonderful children ages 9, 6, and 22 months. They are my loves, my inspiration, my ALL!

A little bit about me and my loves: I have been a Registered Nurse for almost 4 years, and next to being a mother and wife I feel that it is my true calling. My family has endured far too many trying times but we are sustained by the grace, love, and mercy of our Lord! I struggle daily with a physically debilitating arthritic condition called Ankylosing Spondylitis-it’s not exactly how I had envisioned that I would be (physically) in my mid 20’s. My youngest child was just recently diagnosed with moderate to severe Autism. While these things have brought me down many times, my hope and strength are renewed with each day when I look into the loving eyes of my husband and children. My hope in blogging about Mel’s MOMents, is that I can share my experiences and acquired knowledge with others; reaching out to the many families affected by these conditions.

I always welcome your thoughts, referrals to other useful resources, stories, advice, encouragement, and prayers. Thank you!