Monday, August 30, 2010

Changes and Progress

This post may be boring to most, and honestly it's probably more for me.  A way for me to keep track of the changes we've made and, most important, the progress my son has made in the last few weeks.

My son was first put on a gluten-free, casein-free diet, but later pulled off of eggs also due to a food allergy.  We stay completely natural with him, and as organic as possible.  His sugar is also limited.

He is now on numerous supplements thanks to our wonderful DAN! (Defeat Autism Now) doctor that we have found.  Each day he takes:  Nystatin (to clear the bacteria out of his gut), Multi-Vitamins, Minerals, Vitamin C, CoQ10, Acidophilus, Fiber, Amino Acids, Vitamin B Complex, and a Neuro-Disruptor.  Although we don't get the last two items to stay down every day and are working with a compounding pharmacy at this point to put them into a suppository form.  He also gets Melatonin before bedtime because his body doesn't make it naturally, and it is what helps you fall asleep.  Whew, that's quite the list for a 3-year old, but I'm very grateful that we have decided to go the natural route with him instead of using chemical drugs.

So, for the changes we have seen.  He is adding more words to his vocabulary all of the time, and putting words together into small sentences!  He is interacting with us and wanting us to join in on his play.  He is walking on flat feet a lot of the time instead of on his tiptoes (the only way we have ever seen him walk.)  He is answering questions!  And he is starting to use his reasoning skills, which is amazing.  We are finally starting to see fewer tantrums and less anger, although his activity level is still very "hyper."  He is falling asleep faster at night time and waking up happier and more alert.  We are thrilled with all of this positive progress.  The doctor would like to add Vitamin B shots and Glutathione next.  We will have to learn to give the shots at home, and I believe the other is given through IV form, but whatever will help him and make him feel better...that is our goal.  We will continue to fight this and be his voice as long as necessary.         

The Dog Ate It?

Me: (walking into my son's room after his nap to find his crib tent ripped again) Uh-Oh.
My Son:  Pillow did it.
Me:  Your pillow ripped your crib tent?
My Son:  Yes.
Me:  No, your pillow didn't rip your crib tent.
My Son:  Blankie did it.
Me:  Your blanket ripped your crib tent?
My Son:  Yes.
Me:  No, your blanket didn't rip your crib tent.

My son then went on to blame his big brother, and the conversation continued in the same pattern.

A couple of days pass and my son now blames his big sister for breaking the wheel off of his crib leg.  I know that this isn't true because he rocks in his crib so hard, it was just a matter of time before something broke.  We had to remove the remaining 3 wheels.

Etc, etc, etc...

My point is, the siblings (and other objects) are being blamed for a lot of things these days!  And, although I need to remind my son that they didn't do the said crime, I am secretly thrilled.  You see, he's never had the ability to think things out like this before.  He is using his reasoning skills and trying to blame someone else for the things that he does, the things that he knows he shouldn't have done.  Yay!!!

Wednesday, August 18, 2010

Crib Tents: A Love/Hate Relationship

So I pulled out my sewing kit once again to fix my son's crib tent for the umpteenth time last night.  The tent has saved me and my husband many sleepless nights not needing to worry about our son wandering around the house, or worse, outside of the house.  But I wish they were constructed a little sturdier for children with special needs.  Not only does this one look like the Frankenstein of crib tents, it is also our second one for him so far.  And they are not cheap, hence the reason I keep repairing it.  I really do love it though, and would recommend it to anyone with a toddler or special needs child.

Thursday, August 12, 2010

Two Cookies

I was trying to get my son to eat his dinner tonight, and told him that he couldn't have a cookie (gluten-free, dairy-free, and egg-free of course) until he ate 3 more bites of his rice and beans.  He smiled, took my hand, pulled up two of my fingers, and said, "Two cookies."  Yay!  He's actually understanding us, answering, and reasoning.  Holy cow, he's made some big leaps this past month.

Tuesday, August 10, 2010

Siblings, Wonderful Siblings

As any mother of a special needs child knows, life is a balancing act.  And if that life includes more children, it gets even more complicated.  I struggle to make sure that my other children are getting enough attention and one-on-one time.  I don't want them to have to give up their dreams, but I also know that they are learning so much by having this special soul as their brother: patience, love, understanding, care-giving, etc... My older children came to me last night with something they had been working on, and said that I could share it on my blog.

Things We've Learned by Sibs of an Autistic Kid

1.  It's more frustrating and difficult than people think.

2.  It's different from the outside looking in.

3.  You have to be patient.

4.  You have to treat them like everybody else.

5.  You have to learn about them and how they communicate.

6.  You can't expect them to adapt to the way you live; you have to try to understand what they're going through.

7.  When you have an autistic sibling, you have many obligations that weren't there before.  You have to learn to put family first in a whole new way.

8.  It makes it easier when you educate yourself about ASD (Autism Spectrum Disorder).

9.  Talk with your family members about what you're going through.  You're in this together and they can be support.

10.  Remember to trust God.  He's looking at a bigger picture that would blow your mind.

11.  It can be hard to adjust to having an autistic sibling; denial is often present, but trying to accept it helps a lot.

12.  Remember to make the most of these learning experiences.

13.  LOVE, UNCONDITIONAL LOVE, can fill in the gaps of frustration and confusion.

Monday, August 9, 2010

Riding the Roller Coaster

Yesterday was a great day for my son!  He was so happy and interacting with us so well.  He even initiated games, such as ball and tag, and said his first 5-word sentence!  "I want a purple chewy."  We got very excited to hear that many words put together!  By the way, a chewy is what he calls his water-filled toys that get stored in the freezer.

And then he had a melt down today.  Not part of the day, all of the day.  I feel so bad watching him on these days because I know his body just feels out of control.  He runs, screams, throws things, hits, kicks, flips light switches on and off, slams drawers and cabinet doors, spits, flaps his arms, and hits himself on the head.  It is really hard to see him like this.  We did a lot of calming, organized play today like building blocks and smooshing and rolling Play-Doh.  I hope he wakes up feeling much better tomorrow!  

Friday, August 6, 2010

Major Milestone!

My son, for the first time in his short life, can answer (unprompted) the questions, "What is your name?" and, "How old are you?"  Could a stranger understand his answers?  Probably not.  But I know what he is saying.  And then, at bedtime, he finished the last word of 2 sentences in his bedtime book!  My eyes started to tear up.  Really, I thought that I was going to lose it and start crying right there!  I told him that mommy was SO happy, and then we went through his nightly routine of pairing different blankets until we found just the right combination so that he could sleep.  OCD?  Maybe.  Wonderfully adorable?  YES!  Very smart?  Definitely.

Thursday, August 5, 2010

No More Eggs!

So we found out today that our son is also severely allergic to eggs.  That means he is now on a gluten (wheat)-free (and, as my husband will tell you, gluten is what makes food taste good), casein (dairy)-free, and egg-free diet.  Really?  This poor 3-year-old, not able to eat anything "normal".  Off to do more research on "yummy" recipes that he can eat!

My Thoughts (Collected Over Time)

Please don’t try to “fix” my special needs child or my parenting skills.  Please know that the way my child “acts” when you come to visit is probably not the way he acts normally.  It disrupts his routine and his body doesn’t know how to process this.

My house used to be ready for company all the time, with the latest Martha Stewart creations on display.  I prided myself on my amateur interior decorating skills.  Now my style is, what I consider, “Organized Chaos.”  “Please excuse the noise and mess, my kids are making happy memories ~Unknown”

I may not make it anywhere on time anymore.  It sometimes takes my child 2 hours to get dressed and eat breakfast if he is having an “off” day.  He is teaching me humility, patience, and the fact that the world will not end if I can’t make it somewhere or I have to say “no” to other people. 

My child may not be able to say his name or his age, but he can speak to you in sign language, build an enormously high tower out of blocks, and will observe animals for what seems like an eternity. 

Spit!  What is up with all of the spit!?!?!  And why does he have to spit on everything?  Here a spit, there a spit, everywhere a spit spit.  Eeeww!  It is so gross.

My son figured out how to escape from his crib tent today, and did it twice during naptime.  Not such a bad thing for a 33-month old you say?  My child does not have the reasoning skills of a child his age, and sees nothing wrong with climbing on the furniture, taking his diapers off to smear poop all over, or even eating socks.  And if he opens the door and gets out to the stairs, he will probably fall down most, if not all of them. 

Sometimes I wonder why God thought that I could handle this.  I still don’t know all of the reasons, but I trust in Him.  I know that there is a reason for everything.  And when my son is happy, I am happy and at peace.

It is an interesting thing to watch my son and his baby brother getting closer and closer in the abilities that they master.  I know that, one day (and maybe soon), baby brother may pass him up in skills, but maybe this will be a good challenge for my son. 

My child likes to have other children around.  He may not interact with them as another child his same age might, but he enjoys that they are here. 

Wow, my child is loud…very, very loud.

My child has a very hard time with transitions.  Please don’t look at me like “that” when my child throws a tantrum.  I’m sure that your child is not perfect all of the time.  I won’t judge you if you don’t judge me. 

It’s okay if all the colors of Play-Doh get mixed together.  I just hope he doesn’t want them separated tomorrow.