Where's My List???

I'm sitting here watching my little boys play cars together.  I feel very blessed, especially at this time of year, to have them both in my life.  They were so wanted and we waited a very long time for them.  I was also thinking of the "hidden" benefits to raising a special needs child.  Like the need to be organized.  I've had the self-given title of "Hyper-Organized" for many years now (trust me, not always a good thing).  This is not a joke; I've actually had friends give me sticky notes and note pads for gifts because they know how much I love my "lists."  Yes, I've always been organized, but I've learned to take it to a new extreme.  We have a lot of "therapy" toys, and we bring them out one at a time as not to overwhelm our son.  And even though some of these toys have a lot of pieces (blocks, play food, Hot Wheels collection), it is generally an easy clean-up at the end of the day.  My youngest son keeps his other toys in his room, which gives him special play time with his older siblings during the day.  Our schedule is also very routine.  While, I must admit, a lot of  days I feel a little bored, it keeps me on track and things get done.  I know that this is the season for raising my son, here at home, where he can feel comfortable and thrive.  Where he can feel love and acceptance.  And where we, as a family, can learn patience and understanding...not only for him, but for all others who might struggle with something of their own.  After all, what is "normal?"  Got to go, need to make a list to organize my lists.  :)      

Married Mom of Special Needs Child Looking for Long Walks in the Park (with children), Drinks (hot cocoa with the kids), and Dinner (Chuck E. Cheese anyone?)

This is my selfish post.  You see, I was venting to my husband the other day about friends who don't come over, or who just stand at the door and talk when they do.  About not being invited anywhere any more with the kids.  About never being invited to anyone's house.  (Please don't read this and have pity on me and feel like you need to invite me over, just venting.)  Anyway, my honey asked if I have posted about this on my blog.  And I started thinking that it might be a good idea.  After all, I can't be the only mom of an autistic child who feels this way.  In fact, I bet it's pretty common.  We start feeling very alone, very isolated, and even very judged.  I guess I may be in an unusual situation also in that I live far from immediate family and haven't been here long enough to figure out which people will be lifelong friends.  Don't get me wrong, there are a couple of wonderful friends who have been into my house more than once and are not scared away.  It's just that the friends who truly understand (those in similar situations) live a very, very long way away.  I liked when my house was the party house and the place to hold homeschool meetings.  Another thing affecting my feelings about this may be the fact that there are just not homeschool support groups in this area like in other places that we've lived.  It's hard to meet people.  And there are absolutely no support groups or play groups for special needs children and their families.  Okay, time to stop having a pity party and do something about it.  I think it's time to start a group for women like me and their families.  If I could just find the time.....

Flapping is Fun!

It was Thanksgiving today and my son was very excited, although I don't think he fully grasped everything that was going on.  He just knew that we were a little bit out of our routine, there was a parade with big balloons on TV, and a lot of food that he couldn't touch because of his allergies.  (I made him up a separate plate with "safe" food just for him.)  At one point, he started flapping his hands really fast.  After a couple of minutes, his 16-year-old sister joined in and flapped as fast as she could.  He thought this was great!  He looked at her and said, "Like it?"  She said, "Yes!"  He smiled real big.  And then I joined in.  Again, turning to me this time, he said, "Like it?"  And I said, "Yes!  I like it!"  Then the 10-year-old sister and baby brother started flapping, and here we were, all 5 of us looking like we were trying to fly away.  But the look on my son's face was priceless.  He was sharing something with us.  "Like it?  Like it?"  And you know what?  I like it!  It is fun to flap!

Key Key!

My son was in his high chair this morning, just finishing breakfast, when he started saying, "I play key key!"  I was trying my hardest to figure out what toy sounded like "key key," and even thought that he might try to be saying his sister's name.  He was getting more and more frustrated as I struggled to understand him.  I finally noticed that he was pointing to his belly while saying this to me, and then I got it!  "You want to play nakey?"  "Yes!  I play key key!"  So he's been running around the rest of the morning with just his pants, no shirt, while he plays.  

I Need a Nap! Please!

So, it seems as if my son has given up his nap time.  I am really not thrilled about this idea.  Don't get me wrong, I love him, but he needs full, constant supervision and stimulation.  I longed for that break in the middle of the day to catch up on housework, help my older kids with school projects, or run errands.  I'm not sure how this new schedule will fit into my plans.  Selfish, I know.  This is the first day that I haven't laid him down.  We've noticed that he's been "talking" through his nap time the last few days, and then the "destructive mode" kicked in.  Yes, he continues to tear apart his crib tent.  As mentioned in an earlier post, his current crib tent has already been Frankensteined back together several times.  It is our second one, yes, he destroyed the first one also, and our new one has been on back order.  Although we heard from the company today and it should be here next week.  (Happy Dance Time!)  Anyway, he finally figured out that if he ripped the entire side out, or pulled apart the zipper, that he could escape and then proceed to "draw" on the walls by scratching them with a metal door stop he removed from his wall.  Well, here we go into our new daytime life...wish me luck!

Coffee, Tea, or COCOA?

My son wanted to hold his "baby" brother the other day, which is funny in itself since they are about the same size now, but I humored him and told him to go sit down on the couch.  He said, "No, cocoa table."  I soon realized that he wanted to sit on the COFFEE table!  Haha...so cute, I think we will call it the COCOA table from here on out.

Snack Time!

After snack time today, which consisted of cashews, a fruit cookie, and corn tortilla chips, my son said (very dramatically), "Mmm Mmm, that was so good!"

Finding the Right Mix

We added Taurine and fish oil to our son's supplement routine last week, and our son flipped out.  Tantrums, screaming, frustration, and irritability, worse than we have seen in the last month.  A call to the doctor confirmed that we should pull him off of both of these new things for a couple of days to let him calm down, and then introduce them one at a time.  In the meantime, a few days later, we started the B-12 shots.  While we haven't seen a marked improvement from them yet, they are much easier to give than expected (thank goodness!)  In fact, our son hardly knows we're giving it, and just says, "Pinch."  We then slowly started the Taurine again 3 days ago, and, once again, he has gone ballistic.  So we are pulling him off of that for now, and we will start the fish oil soon.  Hopefully there won't be any problems with that.  

And the Winner of the Geography Bee is...

I went upstairs to put away laundry the other day while my oldest son played with his brother.  When I came down, just about 5 minutes later, the two boys were looking at a globe of the world.  My older son was very excited and said, "Mom, you've got to see this!"  He then proceeded to ask his younger brother to find different places in the world.  "Russia, Canada, Brazil," he started as his little brother would spin the globe and quickly point to the named place.  "China, Australia," he continued, with the same results.  And even added, "The North Pole and Home."  So then I added to the list, "Here is Australia.  This is Greenland.  This place is called Afghanistan.  And here is Mexico."  And then we "tested" this new knowledge.  Every time it was the same, he would spin the globe (usually very fast), stop it with his hands, and point to the proper location.  Very rarely was he off, and it was usually because there were two places fairly close to each other with the same coloring on the globe.  It was so much fun, and very cool!  We quickly went and got daddy from his office to come in and "play" with us.  Even he was stunned!  

What's Wrong With YOU?

My son likes to ask me, "What's wrong, mom?"  Then I reply, "Nothing.  What's wrong with you?"  And then he says, "What's wrong with YOU?"  It goes on and on, as he starts laughing.  Today, though, when I asked, "What's wrong with you?" he replied, "I shared a cup."  Me:  "You shared a cup?"  Son:  "Yes."  Me:  "Who did you share a cup with?"  Son:  "Big Brother"  Me:  "You shared a cup with your big brother?"  Son:  "Yes."  Me:  "And that's what's wrong with you?"  Son:  "Yes."  TOO FUNNY!

Our Son in Wonderland

I had such a weird dream last night, but the more I think about it, the more it makes sense.  My son was in a movie, Alice in Wonderland to be exact, and his little body was so confused and mixed up the whole time. Picture Alice in the scene where she takes something and grows very tall, and then uses another something to shrink again.  It was my job to go into the movie and find a way to get him out.  We finally found the right combination of concoctions so that he could fit through the door and I could bring him home to his daddy, who was excitedly waiting for us.  Daddy almost couldn't believe that this was really our son.  We were so happy to have him back.  And our son was so happy to be back.  

Another Doctor's Visit

Okay, here's another boring post.  Unless you are going through this with a child of your own, you probably won't find this very interesting.  But, again, it's for my sake so that I can remember everything.  We took our son back in for another doctor's appointment today.  It was just a normal follow-up with his naturopathic DAN! (Defeat Autism Now) doctor.  We have seen more progress this month than during any other period with him before.  It has been awesome.  He is speaking better, putting together sentences, playing with toys in the proper way, and even interacting with others.  We went over the rest of his blood test results.  We learned that his immune system is working super hard and, therefore, his active white blood cells are high.  This isn't necessarily a bad thing, because it means that his body can actually fight stuff.  He also has low blood sugar, so we just need to make sure that he is eating often and getting plenty of protein.  The doctor is tweaking some of his supplements.  We are adding Taurine and fish oil right now.  I hope this fish oil does well because he's had a bad reaction (diaper rash) to another fish oil in the past.  We are also adding B-12 shots.  Ughh...that means that we have to learn to administer the shots here at home.  Poor kid, this is when I'm happy though that he doesn't feel pain.  We will eventually be changing some of his other supplements too as we run out of our current stock.  He actually did quite well during the visit today.  He was very social with the doctor and played with the wooden train set and blocks in the office most of the time.  We are fighting this, and WINNING!!!    

Pure Joy

During our camping trip this weekend, we took a small hike down to the beach.  It was chilly and the waves were really coming in.  My husband walked down the beach with our son and showed him how to throw rocks into the water.  The only word that I can describe what I saw next is JOY.  My son threw rock after rock after rock into the crashing waves.  He was so happy and having so much fun.  It was pure joy, both for him and me.

Yes, it is a good night.

We went camping during the long Labor Day weekend.  We have set up our RV to be very comfortable for our son.  He has a high chair, plenty of toys, crafts, his favorite snacks...you get the point.  My son loves to camp, until it comes to bedtime.  We just know that every time we camp, we are going to have to deal with tantrums when it comes time for him to get some sleep.  But he pleasantly surprised us this time (something that he tends to be doing a lot lately.)  Every night, while finishing dinner (dinners are usually later while camping), he asked to go to bed.  And every night, I thought that after I brushed his teeth and got him ready for bed that he would throw a fit about getting into bed.  But every night he gave us hugs and kisses and climbed right into bed.  Life gets a little easier all the time.  

Cows, Sheep, and SHARKS

My son has never quite understood how toy sets go together.  Well, the other morning when we were playing in his room right after he woke up, he got his farm set out of the closet.  He brought the fence pieces over to me so that I could help him snap them together.  He then proceeded to very carefully set up the fence in a semi-circle, put two cows near the fence, a sheep, and a farmer.  He said, "Moo" for the cows, "Baa Baa" for the sheep, and told me that the farmer was holding an apple and corn.  Then came the amazing part.  He ran back to his closet and pulled out a small toy shark.  He put the shark in the farm, and then ran away saying, "Scared!  Scared!"  He then started laughing!  Next he went and got an small toy eagle.  He put it in the farm, looked up at me, and asked, "Scared?"  I told him that maybe the eagle wanted to sit on the fence.  He then made the eagle balance on the fence.  He continued to play like this most of the morning.  Running around yelling "Scared!" after placing the shark, and making sure the eagle always had a place to sit on the fence.  Love that kid!

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!!!

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.

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.

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.

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!  

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.

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.