Beautiful Poem

I saw this poem on another person's Facebook wall this morning. It's beautiful and so true.

"I am the child that looks healthy and fine. I was born with ten fingers and toes. But something is different, somewhere in my mind, And what it is, nobody knows. I am the child ......that struggles in school, Though they say that I'm perfectly smart. They tell me I'm lazy -- can learn if I try -- But I don't seem to know where to start. I am the child that won't wear the clothes Which hurt me or bother my feet. I dread sudden noises, can't handle most smells, And tastes -- there are few foods I'll eat. I am the child that can't catch the ball And runs with an awkward gait. I am the one chosen last on the team And I cringe as I stand there and wait. I am the child with whom no one will play -- The one that gets bullied and teased I try to fit in and I want to be liked, But nothing I do seems to please. I am the child that tantrums and freaks Over things that seem petty and trite. You'll never know how I panic inside, When I'm lost in my anger and fright. I am the child that fidgets and squirms Though I'm told to sit still and be good. Do you think that I choose to be out of control? Don't you know that I would if I could? I am the child with the broken heart Though I act like I don't really care. Perhaps there's a reason I'm made this way -- Some message I'm sent to share. For I am the child that needs to be loved And accepted and valued too. I am the child that is misunderstood. I am different - but look just like you." -Unknown

Whew, enough said!

"It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside...Never judge what you don't understand."

I'm not sure who said the above quote, but I think it's fitting. This post may be a big jumbled mess, there's a lot on my mind, but I want to get it all out.

We went to a wonderful Autism Carnival a couple of weekends ago. It was a fabulous event put on by a great organization that supports causes like autism, cancer, etc... It was very "autism-friendly" with lots of sensory activities for the kids. My son spent most of his time in the bounce houses, especially the ones with big slides at the end. But as happy as the day was, it proved to be a giant eye-opener also. There was booth after booth with items for sale such as sensory toys and autism awareness bumper stickers, and others with information on therapy, safety, and support groups. I've been to many fairs before where there were booths (I secretly love them), but this time was different. I wasn't looking at candles, jewelry, housewares, or the "normal" things you might find at an outdoor event like this one, but things to help my autistic son, and us, deal with, well, living with autism! It hit both my husband and I that we have entered a new world, and this is now the kind of stuff that we look at and learn about. There is a whole new vocabulary to learn with words like...stimming, biomedical treatment, ABA therapy, sensory processing, Floortime, autistic rages........the list goes on and on and on. But we are dedicated to helping our son in any way possible. When we could tell our son was going to start melting down, we quickly headed for the car. But the excitement of the day was already too much and we listened to him scream the entire ride home. It was the first time that I have felt that heaviness for awhile, and I am preparing myself for another event coming up soon...

We decided to have our son tested by a pediatric psychologist for a full diagnosis. So far, his "labels" have been given to us by pediatricians and occupational therapists. He has gone through all three testing days (the first - just watching him play while interviewing us, the second - an IQ test where he had to put together puzzles, finish patterns, and match shapes, etc..., and the third where the psychologist got on the floor and played with him to see where his social and imaginative skills are. Actually, I guess this last test measures over 70 different areas), and my husband and I have filled out yet another mountain of paperwork. Well, we go back for all of the results next week. The doctor said to plan on at least an hour and a half...that's a lot of results to go over! We know that this will be the entire report about our son...which can include other things, not just his autism. It's one thing living it day after day, and another hearing it.

You know what, I think I will end this post here and start a new post, or 2, for my other "subjects." I promise I've got some good stuff to report also! But this feels like quite enough for now. By the way, my beautiful son is sitting next to me as I type playing games on the iPad (love that thing!) which he has started playing upside down (the iPad that is, not him.) :) Maybe I need to get his eyes checked too?!?!

My Special Boy Living In This "Typical" World

It's been a long time since my last post. But maybe that's a good thing. See, I haven't had the need to "vent" as much lately. My son's behavior has made a huge turn around. Of course we still have our "moods" and the occasional "off day," but for the most part he is doing phenomenal. What caused the change? Well, I'm not really sure, but I know at least some of the things that are different in his life right now. The biggest thing was a move that our family made to be near extended family. It's been amazing to see the love and support that my little guy is getting! In our new house, we have been able to give him more freedom. It is a rambler-style home and he can run to his heart's content around the main floor. We have also taken him off of all supplements (except for Melatonin, which is our life saver!) In addition to all of this, I have learned that I do not need to be running around and "entertaining" him at all times. I'm not trying to "get him used to" the mall, the aquarium, the gym, the park...etc, etc, etc... That's not to say that we don't get out of the house at all, we do, but now our outings are better suited to making him comfortable. We have a large yard where he can run (and run and run), and family just down the street who accept and encourage him at their house to play. He also enjoys the nursery at church (don't ask me why this doesn't overwhelm him, but so far he loves it!) Did I mention his speech has improved? I would say he is still 1-2 years behind his age in different aspects of communication, but he is trying so hard! I love this little boy so much and the bravery it takes for him to live in this "typical" world every day!

What Did You Say?!?!

Help!  My son is using some really mean phrases!  He is not very verbal in the first place, but now when he does talk it is either demands (Chips!  Blocks!  Water!) and hardly ever with a "Please" unless I prompt him, or he is going around saying things like, "I pinch you," "I kick you," "I hate you," and his newest "I kill you!"  I have no idea how to handle this.  It's not like we are saying these things around the house!  The only things he watches, besides his special videos (like Teach 2 Talk and Your Baby Can Read) and some "educational" shows occasionally (like Clifford and Barney), are a couple of Disney movies.  I think the latter (the Disney shows) might be where he is getting these phrases from (Monsters, Inc, Toy Story 3, etc...).  I guess I am going to have to take the movies away (which I haven't done yet because I've felt it was unfair to his little brother), and hope that he will be able to forget these phrases, quickly!  I am getting worried because he is becoming more aggressive as he is growing older also.  I'm not sure what I will do when he is stronger than me.  I hope that he can learn to be in control of his emotions by then.    

We Can't Forget the Siblings

Today's post is a little different because it doesn't have much to do with my autistic son.  He was in bed at the time.  Nope, it is about his little brother.  We CANNOT forget these beautiful siblings of special needs children.

Last night, I had a few of my childhood friends over to catch up.  I thought the evening was going to be just what I needed, and it was, but what I realized throughout the evening is that it was what my little one needed also.  We don't have a lot of playdates because my son with autism just can't handle the extra noise and commotion of extra bodies in the house.  Don't get me wrong, we do have certain friends who still drop in (one in particular that I can think of) that understand my son as best they can and their kids play around my son.  Not always "with" my son, since he lacks in social skills because of his autism, but he loves to watch them play.

Anyway, during my evening last night, I started watching "baby brother" and his interactions with my friends' kids.  First he was being chased by the little girls and was screaming and laughing in delight, then they were down on all fours roaring and pretending to be all sorts of animals, and then my son and one of his new friends (my friend's little boy who is just about the same age) climbed onto the kitchen chairs and ate bowls of ice cream together.  It was a beautiful sight, all of it.

I need to make sure that I am nurturing his friendships as he grows older and schedule plenty of playdates, even if his older brother just watches.  Maybe, eventually, he will learn to join in and be chased by the girls too!  ;) 

Will I Never Learn?

Really?  Why do I always think that it will be different this time?  That I can live my life anywhere close to what I did before my son came along?  We are still on vacation, and I thought it would be a lot of fun to get out of the condo and take the entire crew (that would be me and 5 kiddos) to the mall.  It's not like the mall was crowded today...it was a school day, and we arrived before lunchtime.  And we weren't really "shopping," just window browsing and stopping off for a treat.  By the time we left the mall with whatever dignity I had left a short time later, the entire mall was cheering with our departure.  Okay, so that may be exaggerating, but just a little bit.  It's days like today that I fantasize about downsizing and finding enough extra money each month to hire a full time nanny, (for trips such as today), and a house keeper.  :)

Final Note:  Please don't think that I don't love my son like crazy!  I do!  Just keep in mind that this is my safe place to vent, and the best therapy that I can afford.  ;)

Here We Go Again!

I have decided to start the newest protocol recommended by my son's DAN! (Defeat Autism Now!) doctor.  I will start very slowly.  I have been hesitant to start anything new because my son is very sensitive to everything, and he's been pretty level lately.  BUT, the past two days have been rough.  Let me start by saying that we are on vacation and, although I've tried to keep his routine close to the same, I'm sure he is feeling the change.  I decided to do something fun for him yesterday and I took him to the aquarium.  He usually LOVES the calming effects of the water and fish, but I forgot to take into account that it is spring break where we are right now and the aquarium was packed with noisy kids.  I should have just turned around to leave, but I was meeting a friend and her kids there, so I thought we would get through.  Uugh...it may have been the worst meltdown yet.  Actually, it was a continuous series of meltdowns.  All of us (my older kids and I) were exhausted by the time we left.  Therefore, it has prompted me to start on the special blend of homeopathics that his doctor sent with us on vacation.  There are other things that we are supposed to add also, but, again, I am going to go s-l-o-w.  Wish us luck!