Wednesday, September 29, 2010

Break on Through....to the Other Side

Faith went to Speech Therapy this past Monday (yea!  She didn't sleep through it) and Occupational Therapy.  She had a "break through" the therapist said.  She let the principal hold her and take her around to check out the school (the principal is super nice, but that's not real common for her to let others do that), then upon their session being up she was ready to go and had herself a little temper tantrum stomping her little feet and looking at the door and very plainly said "OUT!" 2x.  Very exciting stuff (I wasn't there so this was relayed to me by my Mom and Dad who were both there).

Last week we got a letter from Angelus' school in which they have recommended him for the Gifted and Talented program because he Excels in Reading.  He is one incredibly bright boy.  I came into the house from work and he looked at me and goes "I got a letter from school and I don't wanna have a long talk about it."  I read the letter (apparently his Daddy had talked to him in depth about it) and I just asked if he wanted to do it. He said he did, so I said "Okay, we're done talking about it then".

We've switched out Faith's milk to Rice Milk and I think she does better with it and it wasn't anything like trying to switch her off of a bottle onto a sippy cup.  She drinks the rice milk just like she did regular cows milk, but I'm now having to figure out how to cook with it too as its consistency is different than the cows milk.  We'll get there, though.  I also found a few gluten free snacks.  Angelus likes all but the cereal bars just fine too and I have what I need to bake some bread I just haven't been able to quite yet.  I'll probably try to "give it a shot" this weekend.

Like I say almost all the time....I am one lucky lady.  I tell the kids ALL the time and it's true, Angelus is EXACTLY the little boy I wanted and Faith is EXACTLY the little girl I wanted.  It doesn't get any better than that now does it?!?

Friday, September 17, 2010

An end or a Beginning

Went in for our final Social Security appointment this morning.  The lady we had working with us was just a very nice lady, my experience with all the "professionals" has still been incredibly positive.  I'm sure that's a God thing and a prayer thing.  Thanks everyone for that. 

It's weird though, because we were approved for it for Faith and I know that's a good thing because a lot of things can get incredibly expensive and it will also help pay for equipment that I know will benefit her in the long run but it also makes me sad because it makes it all more *real* to me.  I know that's weird because we (my family) are living it and we *know* it's there but for some reason this just "hits it home" even more.  I'm taking it hard which just seems strange to me, but it is what it is. 

Now on to the next phase of it all...getting her appointments and referrals to Neurologists and Geneticists all set up.  I think I've put this one off because I'm just scared of what the neurologist might say.  I know that's silly too, but still...it's there.  One thing at a time, though.  Right?  Since the stuff with Social Security is completed and the therapies are in place (currently) on to the ones I've been putting off the longest.

Gonna get Angelus from school today and hang out with him this evening (just the two of us) for a little while.  He seemed to be looking forward to it.

Tuesday, September 7, 2010

A little about life...what a beautiful thing.

Faith had her 4th week of Speech therapy today.  Mom told Tommy that apparently she was a tad (lot) difficult for the Speech therapist.  It was bound to happen.  She does have tantrums and gets up-set and had difficulty communicating what is making her that way, so it only makes sense it was bound to happen.

I've been currently reading a little more about vaccines and the possible link to Autism.  I can't imagine how heart breaking it would be for a parent to have a normally developing child then all of a sudden they begin regressing.  Faith never did that.  She never got to that point where she was talking, or understanding what you were saying to her.  I believe in my heart of hearts she was born this way.  I also stopped her immunizations when it was time for the MMR because no one was really taking my concerns seriously and I didn't want to take any chances on it "getting worse".  Nor did I take any kind of vaccines when I was pregnant with her.  The "biggest" one they tried to push on me was the H1N1, but I have only had the flu twice in my life time, and wasn't ill during the pregnancy.  So I thought it may do more harm than good.  No way of knowing for sure, but still couldn't (and still can't) find any kind of a benefit from having done that. 

I'm not sure if I will eventually go ahead and have the vaccines done for her or not.  Like I've said all the information is so confusing and difficult to take it all in.  Biomedical treatments, more specifically Chelation therapy scares the crap outta me.  It's terribly expensive, but even if it were affordable in all of my research it's not a "right" option for Faith or my family.  I do understand the changing up of a diet.  Faith has digestive issues, but thank goodness she's not a picky eater so that's a good thing.  I am really thinking and researching even more a gluten free diet and wondering if that would help.  Gluten free, but not casein free because I can't see how taking dairy out of her diet would be a good thing.  So that's what I am currently looking into for her and changing up our diets some and by our I mean mine and hers.

Angelus has made a 102 on his first two spelling tests and a 101 on the last test he took.  He forgot to bring home his spelling words to practice this week, but he said "It'll be ok because they're easy for me".  He was also sent home with a 2nd grade reader that he just "blew" right through.  He said that he had to go into the 2nd grade teachers classroom and take a bunch of tests.  He and one other little girl were sent home with 2nd grade readers.  I pretty well knew even before the school year got started that he was above those "readers" they first sent home with him.  I think he's a little above this one but I'm kinda thinkin' a 3rd grade one would be just right for him at this point, but am convinced he'll be well beyond that before 1st grade is up.  I would love to say "he gets it from me", but he actually gets it from Tommy.  Tommy reads very well, and I read fairly slow when I was a kid so I know he gets it from Tommy.  But he does tend to read to me the most, so maybe just by that he gets it from me.

Tommy is learnin' "the way of the coupon" this evening and grocery shopping with his best friend Kenny who is (in our world) pretty much a master at it.  Coupons are good things, Tommy doing the grocery shopping is as well.  Thought I'd toss in a little about life this wonderful Tuesday and short work week.

Monday, September 6, 2010

What about the boy (Angelus)?

I know I usually post things about Faith and our journey with her diagnosis and how it's going and affecting the family, but I came across this article about Siblings and I just know that Angelus is the best possible brother Faith could have gotten for this journey in life.  It hi-lights all of the wonderful benefits that these Siblings either learn or already have that we, as parents get to see a little more clearly.

9. Five Benefits of Growing Up With an Autistic Sibling
By Dana Fialco, CenturyCityNews.com
Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:
1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.
2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.
3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.
4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.
5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.
Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.
Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the "Starabella" three-book audio series. Visit her online atwww.starabella.com.

Sunday, September 5, 2010

Floatin' Along

We participated in our first ever parade yesterday.  Faith wasn't a fan of sitting on the float until we were going a little faster than parade speed.  She loved hearing the marching band, and riding in the back of a pick up truck.  All of these things she had never been exposed to before.  I am so grateful for the support group we have and those involved with it.  Angelus did alright with it. I think he would've had a better attitude toward it if he had ate something before we left (like I had suggested). 

He's been having a rough time lately.  Not sure why...he's just been way more cranky and disrespectful than usual (really only towards me, so clearly I need to do something different).  We still haven't heard anything from Social Security, but I know that would be awfully soon.  I would like very much for one of us to be able to get Angelus from school and pick him up from school and to go to all of Faith's therapy appointments instead of my parents having to take them to these things, but I know I have to work to take care of the family.  I'm just terribly confused about tons of things at this point.  Maybe clarity will come soon. :) 

Sept.15th I'm going to go see Temple Grandin speak, I'm very excited about this and ready to learn more.  The only bad thing about this learning more is there is so much information to ingest and sometimes it's very contradictory.  I'm sure we'll get what's right for Faith and our family figured out from it all.  At least that's my hope.

Friday, September 3, 2010

Sometimes....it takes a village.

Everyone has trials to go through in life.  Some are hard, some we just take really hard...but if we take a few minutes there's always a few "Unsung Hero's" along our journey.  For me, there's been many throughout my life.

When I told Tommy what I thought might be going on with Faith, he didn't say "she's just 3" or discount my opinion/view.  In fact in the 7 1/2 years we've been married I've never felt once like he thought I was incapable or that he "discounted me" in any way  .Jennie is always good for some laughs, ice cream and an ear to listen to my concerns about everything going in my life.  Dawn and Brandy Rowbotham (sorry if I just totally killed your   last name)....anyway, they have always seemed to have just the right words of encouragement at just the right time. For that I am more grateful than you'll ever know.  Russ and Melissa have helped our family out so much more than most anyone knows in many ways.  I am so glad that they are a part of our life.  The more I think about all of those who have reached out (and continue to reach out) in Tommy and my 7 1/2 years of marriage I keep on adding more and more to this list.  Crystal for her sillyness, it makes me smile when I need it most, Stacey and Ellie for your wonderful support of just life in general....all of the fantastic people who pray for us and our sanity.  Angelus giving me extra hugs when he can tell I really need it and him being just patient with how things are in life.  What a wonderful son he is.   It's just wonderful how many people do reach out when you need it.  My Mom and Dad still don't seem quite on the same line of thinking as what we are, but they are incredibly supportive with watching the kids making sure Angelus gets to school and back home, Faith gets to her therapy appointments when I can't make it.

Sometimes...it really does take a whole village. How lucky of a girl am I to have all of you? Plus so many more who have reached out to help educate/support and encourage us.