Melissa's MOMents

SOMETIMES IT’S SHEER WILLPOWER. SOME DAYS THAT’S NOT EVEN ENOUGH…PRAY WITHOUT CEASING.

All too often we get so busy shuffling around between school and swim lessons, helping the kids with chores and homework, running them to their music classes, scheduling and running to appointments with doctors and therapists…and the list goes on…it sometimes becomes so busy and difficult to manage all of these things, that I have “set aside” my own pain and sometimes Miccah’s too. It’s not that I don’t know it’s there still, or the impact that it has everyday, it’s just that one must go on with life and push through the pain, and try to enjoy things in spite of it. Many people aren’t able to understand that, I know that Miccah does understand though…and that very fact breaks my heart. Last night my heart broke a little more for him, as my eyes were opened a bit more to the faith of my 8 year old little boy.

As Miccah, Delaney and I were watching “our show” on Sunday night (Extreme Makeover Home Edition), Miccah let me know that he was having some pretty bad pain in his right knee. I got him an ice pack and some Tylenol and we kept watching our favorite show. I noticed that he really wasn’t able to focus on the show because of his pain and so I kissed his head, gave him a hug and asked if he was okay. Now, anyone who knows what it’s like to have chronic pain knows this is a silly question, but as a mom I often feel so lost for how to help my sweet boy, that the silly question is all I’m left with. Consistent with his typical response to that question he says “I’m fine mom, just hurting a lot tonight.” A few more minutes go by and he says “Mom, I know what I’m going to say when I pray tonight.” I respond with “Okay honey, what’s that?” He says “It’s something I haven’t said before, but I want to save it until later when we say our prayers.” While this was a bit puzzling to me, I was of course proud that he thinks about talking with God more often than just when we pray before meals and before bedtime.

After the show is over (amazing and inspiring show, as usual!), Ken, Delaney, Miccah and I sit together to pray before the kids go off to bed. What Miccah says in his very short prayer seems so simple and yet so profound…and my eyes well up as my heart aches for him. Miccah: “Dear Jesus, thank you for today. Thank you for always being there for me when I am hurting, and thank you for always helping me when I am hurting. In Jesus’ name, Amen.”

It is incredible how alone one can feel when dealing with a condition like Enthesitis Related Arthritis (a juvenile autoimmune arthritis), or Ankylosing Spondylitis, or many other chronic conditions. This feeling of being alone is often still there, no matter how supportive, loving, kind, and helpful your mom, dad, husband, wife, sister, brother, or friend is. I found it extremely moving that my sweet little boy knows that his God is always there for him, even when he feels consumed by his pain. I couldn’t hold back anymore…I gave Miccah an extra long hug, a big kiss, an extra “I love you,” as he went off to bed…and then the tears flowed.

Our Sweet Miccah

For those who may think that being a quitter and loser is for lazy people well, let me tell YOU…it is hard work! Over a year ago (January 2010 to be exact) I sat down with my physician and said “I want to get off this stuff” as I waved my empty bottle of Oxycontin in front of him. Fortunately I had an AMAZING doc at Penn State, who thought of me as more of a daughter, than a patient (in his own words). He had seen me cry, writhing in pain. He had listened to my family’s story of despair over the crazy amount of stress and trials that we continued to face…from receiving the news of my positive HLA-B27 test (that would later help confirm my diagnosis of Ankylosing Spondylitis), to our fight to help our young son who was diagnosed with severe Autism. Dr. S, as I’ll refer to him here, he hugged me as I fought back tears over my husband’s struggle to support our family of 5 on $1000 per month while trying to finish his PhD; and later hugged me again as he asked about and I shared my agony over my son Miccah’s diagnosis of Enthesitis Related Arthritis. “You want to try to come off of your pain medication…NOW?” was his first response. “You know that most people have to go through detox or have to be hospitalized in order to come off this kind of stuff” “Yes, I know, but I can do it on my own.” was my reply. “If anyone can, you can,” was the last thing said on that matter. I remember this conversation like it was yesterday, because the physical and psychological suffering that I endured immediately afterwards, is something I’ll not forget anytime soon. That was the first time that I REALLY knew what it felt like to be a quitter! I’ve been quitting ever since then!

Most recently, my husband and I quit smoking. Anyone who has ever had to conquer a nicotine addiction, knows how difficult it is. It has been 4 months, and believe me I’ve had many, many days where I’ve wanted to go back to it. I realized though that I had been smoking for the greater part of more than a decade. Yuck! Seriously! So again, as anyone who has embarked on the quitting smoking journey knows, most people gain a considerable amount of weight. I have gained 20 pounds since February. That’s almost equivalent to the amount that I lost last Spring/Summer when I stuck to the Gluten and Dairy free diet with Aidan.

So…as I said, I have been a major QUITTER and now it’s time to be a BIG TIME LOSER! According to my BMI I am 50 pounds over weight. I think I will set a more realistic goal for now, of loosing 25 pounds by the end of summer. Today marks the first day that I’m giving up nighttime snacks again! My joints need this, as well as my digestive system, and so does my self-esteem! Wish me luck!

Last weekend my wonderful mother-in-law came over to watch the kids while Ken and I went to run some errands. Our last stop was the Safeway closest to our house. When you’re pinching pennies, grocery shopping trips are pretty quick. We were leaving the store with our 1 bag of food and I just happened to notice a little boy, who looked to be about 4 years old, playing near the doors that lead in and out of the store. I mostly noticed him because I thought it was cute that he must LOVE spiderman, kind of like how my Aidan loves trains! My attention shifted from his cute spiderman shirt and spiderman rubber boots, to the fact that he was galluping out the door towards the parking lot.

Now, I’ve seen this quite a lot actually and I always scan the area and usually end up seeing the parent who yells to the child to come back or runs over to take his hand. That didn’t happen this time…my husband and I kept walking behind him and I said to Ken “I don’t see that kid’s Mom or Dad.” Ken looked around too at that point, but didn’t look as worried as I’m sure I looked. So…the Mom in me shoves our one bag of groceries at Ken, saying “take this, I need to make sure he’s okay.” I followed this little guy around the parking lot, initially trying to talk to him, before realizing that he seemed to not even know that I was there. I immediately had flashes of Aidan in my mind (and every other Autistic child). Maybe it was wrong of me to assume a “diagnosis”, but it didn’t matter to me anyway, this child was in danger. I followed him closely, always trying in vain to talk to him “Where is your Mommy hunny?” or “Where is your Daddy spiderman?” I got absolutely no response as he continued to run through the parking lot, jumping on and off the curb and pretending to “fly” like spiderman. Ken tried to talk to him a few times too as he ran by. I did not want to try to take his hand (for fear that he might freak out), so I continued to run right behind him through the parking lot for a good 5-10minutes, trying to protect him from cars that might come around the corner. A Safeway employee came out after a few minutes, to collect shopping carts from the lot and realized what was happening. He asked me if I could still stay with him while he went back into the store to try and get help or find his parents. In a quick minute a man came walking out of the store, grabbed the boy’s hand and walked back into the store. My heart stopped pounding in my ears, as Ken and I walked to our truck and the Safeway employee thanked me for helping. I was near tears when we got in the truck as I pictured my Aidan as that little boy…

This scene keeps playing in my head over and over, especially with news of so many young autistic people running off, or going missing over the past few weeks. My heart breaks for the family in Quebec whose 3 year old boy (with a mild form of Autism) went missing last Sunday. He has still not been found. A young man who was Autistic and diabetic went missing a few weeks ago and his family suffers and grieves his loss after his body was found in a river in Boston. Another young Autistic man went missing last week from his home in Huntington, NY but is now, thankfully, back home. How do we keep these young ones safer? I suppose mostly just continue to pray that God be with them each day…

My family has recently found an amazing church family that we’d like to be a part of. I was just speaking with the children’s minister yesterday, over the phone, about putting some more safety features in the nursery. The mom in me always worries, but that worry is amplified when caring for a child with Autism. I’m always searching for more ways to keep him safer!

I learned of one such way about a year ago, and have longed to provide the amazing gift to Aidan ever since. An organization called “Animals for Autism” located in Illinois is training Siberian Huskies to be Autism service dogs! One of the many things that these amazing, highly trained animals can do is ease the worry of parents who fear that their child with Autism might run from them in public, etc. There are many organizations who are now training Autism service dogs, but this incredible organization in particular is doing something extraordinary. In honor of April being Autism Awareness Month, they are giving a service animal to one deserving family, free of charge! My family will be one of many, I’m sure who would love to welcome “James” into their family, as a service dog. Even if we are not chosen to be James’ family, I hope that we can be blessed with the amazing gift of a service animal, from this organization, for our sweet Aidan!

Check out “Animals for Autism’s” website: http://www.siberiansnowbabies.com/animals_for_autism

Blessings to you all!

April is Autism Awareness month, and today is World Autism Awareness Day! People all over the world are joining the organization “Autism Speaks” in “lighting it up blue.” Facebook profiles are proudly displaying “light it up blue for Autism” pics, and some people even petitioned the White House to light it up blue.

Amidst all of the excitement today, I am reflecting on the past year and a half that my family has been affected by Autism Spectrum Disorder. In so many ways it has been a struggle, yet in so many more ways it has been a blessing. Autism has tested the strength of my marriage, and strength of my family’s bond…and my marriage and my family ARE stronger, we are so much closer than at the start. Each of us has learned to have more patience, compassion, and understanding for each other and those that we share this world with.

I am so proud of my family and especially proud of my Aidan. He works so hard to overcome his difficulties…and he does it with the most gorgeous smile on his face! My family has learned how and why to eat healthier and we’ve sought out more natural interventions for the other things that afflict us, that we may not have otherwise sought out.

Many who don’t live Autism, can’t realize the daily sacrifices that are made not only by parents, but also siblings and these beautifully special kids themselves. Parents sacrifice time and money; siblings learn to understand that it is necessary for their brother or sister to get more attention; and these beautiful kids push onward and outward, hoping to be understood.

Ultimately I think that most people can describe trials that they have to, or have had to face. Each has a different outlook. Each family’s Autism story is a little bit different. My family has hope for Aidan. We feel blessed by the changes that we have made because of Autism. And we will continue to fight alongside him, to help him feel understood, to help him feel healthy, and to help him feel satisfied and fulfilled in his life. Afterall, isn’t that what all loving parents want for each of their children?!

We LOVE you Aidan, and we look forward to many more happy times learning and growing with you! Here’s to World Autism Awareness Day, and to hope and healing

This is the face of HEALING Autism!

A quick, easy, and delicious GFCF meal!

Here is a quick, easy, and delicious GFCF meal. I first made this a few weeks ago when my husband jokingly said “the meal in the picture on the sausage looks good-can you make that?” Well, it actually ended up looking just like the picture and tasting amazing!

Ingredients Needed:

Freybe Chorizo Sausage (I picked some up on a Costco shopping trip with my MIL)

Rice, prepared (I first used 6 servings of long grain brown rice for a family of 5, second time used 2 packages of Uncle Ben’s Bistro Express Basmati-both turned out yummy!)

Broccoli Florets (fresh or frozen-I used frozen) or vegetable(s) of choice (I used green beans and sweet corn the second time)

*Optional* Maggi or Soy Sauce to taste (the Maggi we used was not labeled as GF)

Slice sausage into medium/thin rounds. Mix all ingredients in large, deep frying pan. Fry for about 15-20 minutes, or until veggies are cooked and sausage is warm. Stir occasionally so that the prepared rice does not stick or burn. What’s great about using the Chorizo sausage is that some of the spices in the sausage seep out into the rice which gives it a nice color and flavor! ENJOY!

Can’t believe it has been so long! So many things have changed yet again. My family and I are now living in Edmonton, AB, Canada!!! I still can’t believe it myself. I have had such and urge to write lately, but feel like my thoughts are too scattered. Well, here goes anyway…

Always have to talk about the kids: Aidan was doing SO well before the move. He just started talking away, back in August/September 2010-it was amazing! He has completely dropped all signs (which kind of makes me sad in a way), and his speech and some behaviors have been affected with the BIG transition/move to Canada. It was incredible though, he knew all colors, numbers up to 10, the entire alphabet minus maybe 3 letters, all the Thomas the Tank Engine train names. He’s working his way back up to these things He has already gained some of the lost speech back, for example he now will say “Ank you Mommy/Daddy” when we do something for him or give him something. His big love is still trains, trains, trains. He reminds me so much of Miccah with this. He knows all the names, and plays trains ALL day long. He’s just so adorable, and we are looking forward to more of his amazing progress. We were delighted to find that there are many more options and services for him, and Autistic children in general, up here! It’s in the works!

Miccah was diagnosed with Enthesitis Related Arthritis in October/November. ERA is in the same family as Ankylosing Spondylitis and is painful and progressive too. I’ve spent many nights crying for my boys, who have been cursed with my genetics…and yet they are both amazing and find ways to laugh and smile and brighten our lives just the same. Miccah has had, I think, the hardest time with the move. He really misses his best friend Rees in Bellefonte, but has been able to Skype with him a few times and really enjoys that! He does like his new school, and has made some new friends, but I think it will still take awhile.

Delaney misses her Bellefonte friends too, but has loved being able to see her biological mother and other siblings on a more regular basis. She of course, made new friends very easily at her new school! It seems as though her hair pulling has dwindled off for now. We’ll pray that it stays that way. Ken and I are really fearing the teenage years that are creeping up on us fast…LOL

I myself miss my PA friends dearly and have felt somewhat lost without them. It has been wonderful having family nearby, buy I do miss my friends! I’m hoping that warm weather in the future and the new job will bring new friendships. I’m excited to share with everyone that I did get my certification as a Signing Time Academy instructor last fall and can’t wait to get the word out here in Edmonton. I just hope that I can get some classes started soon! This past week has sparked our hope, with some good job prospects for me. One more interview tomorrow, and then I really need to be able to take something on in the next week! I’m still dealing with my AS as best I can. I’ve had some new symptoms recently and lots of changes to my medication regimen, including now Remicade. I think things need to remain the way they are as far as medications, and I just need to do better with other things, if there will be any discussion of future ambitions. I’m scared that my RN career will be short-lived too. Prayers are welcome

Ken continues to make efforts with his dissertation, but has had to try and get back in the groove of things so to speak, after the move and all! He’s still as handsome as ever my rock, and the strong-hold for our family. Hopefully he will finish writing over the next few months and will move on to other things-he’s ready to be done with this diss!!!

I hope that I can post more regularly, especially once our schedule is more layed out with my work and all! Happy Blogging

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