Reaching For My Oxygen Mask

The world looks much brighter today (even though it's actually cloudy where I live!) You've heard the announcement in the airplane, "Put on your own mask first before assisting children." I need to take care of myself so that I can take care of my children. I know that my body functions much better when I get a good night's sleep. Last night, I got 7 1/2 hours! Okay, it's still not the 8 that I crave, but I feel so much better today. I should make a note that we have been very blessed that our son will sleep through the night as long as he gets his Melatonin before bedtime. It is very common for autistic children to have sleep issues. I have also been warned that his body may get used to the Melatonin to the point where it stops working and, eventually, we may have to take him in for a sleep study. But, for now, I need to try harder to take advantage of the fact that our house is quiet at night.

The "Official" Diagnosis

Well, here we go, just as promised...the "labels," as given to us by the pediatric psychologist.

I will put this in fairly simple wording, as the actual meeting lasted about one and a half hours; every test and medical term gone through with a fine-tooth comb. But it all boils down to this:

*High-Functioning (partly due to his average IQ) Classic Autism (we had been told at age 3 that he had autism, but we were not sure where on the spectrum he actually sat.)
*Sensory Processing Disorder (already known...this was his first diagnosis at age 2)
*Anxiety Disorder
*ADHD

That's a lot to fit into a little 4 year old, right?!

Will the diagnosis and all of these fancy words change him? In a way, no...he is still my same beautiful boy with the gorgeous dark eyes that he was before the meeting. He still loves his gluten free vegan waffles with peanut butter, watching his favorite cartoons over and over, and playing with Play-Doh. But, in another way, yes, it just might change him. Now we can make some decisions knowing fully what we are dealing with and what we could possibly be facing in the future.

So now it is therapy time...again...
We decided to start him, this time, with something called Floortime. It is very family centered and focuses on a lot of reciprocal playtime. It is so hard to know what the right "thing" to try next should be, but this feels like a good fit. I'm crossing my fingers!

But my main concern is the exhaustion and overwhelming stress that I have been feeling lately. I think I feel so much responsibility for his progress, along with trying to balance 4 other children (2 of whom I am currently homeschooling), a wonderful husband, and the rest of the stuff that goes into everyday life. I am seriously considering a school setting for my darling son. I think it might do him good to let him get out with other faces a few hours a day and receive a better variety of therapy throughout the day. It might also take some of the worry off of me wondering if I am doing everything that I possibly can for him. Okay, so I may always feel that worry, but I'm working on taking some of the pressure off of myself!

Stay tuned...only time will tell...

Our Newest Therapy Toy

 

Yep, that's my son in there. He loves it! He can swing or just "hang around."

Here Comes the Sun!

Now, how about a happy post?

We are so excited and hopeful because our son has begun expressing his feelings lately! I don't just mean smiling when he is happy, or screaming when he is upset, but telling us in his own words when he can't control his feelings. He will sometimes tell us now in the middle of a meltdown, "I'm freaking out! I'm freaking out!" Or when we tell him that it's okay and to calm down or stop crying, he'll say, "I can't! I can't!" So you may be thinking, 'But it's still happening through a tantrum!' That's okay...he's beginning to recognize that he can't always be in control of how he feels, his brain doesn't work that way, and he's letting us know that! He's actually telling us! Communicating!!! We know that this is just the first step in him being able to also recognize what he can do to calm himself down when he knows that he is starting to get "out of control," even if that means removing himself from the situation.

Another positive note, he is starting to express loving feelings more often. He will hardly ever head off to bed anymore without finding his little brother first and giving him a hug and kiss. Not even prompted! And he loves to run (fast!) into my arms or my husband's arms, sometimes at more of a tackle speed and strength, to give us a hug. :) How phenomenal is that!?!? And, just a few precious times, he has said "I love you," also unprompted.

Fighting Hard Because There Is No "Magic Pill"

I thought we would try a day out to the library. I packed my son's stroller, his chewy necklace, and the thought that he would look happily at the children's books while I chose some to bring home. Two of my older children also went with us. The minute we walked in to the library, he stiffened up. His arms and hands got tense, and his legs and body went rigid. We made our way back to the children's section, of course at the very far corner of the large building, and then all h*** broke loose. It was the largest public tantrum that he has had in many months. Not only did the screaming begin (and I am talking blood-curdling, top of his lungs, high-pitched wailing!), but he planted his feet between each front stroller-wheel and the frame to try to avoid me from being able to push him. So this is how we made our way out of the library, as quickly as I could possibly maneuver the now-hindered stroller, through every section until we made our way, finally, to the doors. Thinking about it, I wonder what it is about that quiet place. The lights? The humming of all of those computers? The people? Whatever it is, the library has joined the list of places my son can't stand.

This event helped spark a venting session to my sweet husband, who is so wonderful about listening to my ranting. I have a secret frustration with so many of the autism sites and blogs that I follow. So much of the time, I read the sentiment that parents would not change their child's diagnosis even if they could because it makes them who they are. And to that I just have to say, REALLY?!?! I adore my son as he is...but, right now, there is no cure for autism. Nothing that I, or anyone else, can do will change the fact that he has autism. And I have come to accept that. BUT, if some genius came to me tomorrow with a pill that would take away the autism...well, you can bet everything that I would give it to him. Why would I say that I wouldn't take away my child's pain...his digestive issues, his sleep problems, his frustration, his lack of interest in toys and friends, his uncomfortableness because of his sensory processing disorder in wonderful places like the library and the aquarium, his anger when he can't communicate even the simplest of things, his violent rages...the list goes on...IF I could take it away and he could be happy for even one full day...well, I would do it. And I really can't imagine that faced with this option, many parents with an autistic child would say no.

Now, knowing that there is not a "magic pill," I love my son all the same. Even more! I just needed to let that out. I will fight with all the love in my heart to give him a happy life. After all, he deserves it.

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!  

While You Were Sleeping

While on vacation last week, I found myself staring at my son while he was sleeping.  And thinking to myself, as I looked at his long eyelashes, his perfect lips, and his tall body, that nobody would know anything was "different" with him if they saw him like this.  It is so easy for a stranger to see him in public and wonder (or sometimes even comment out loud) why he is misbehaving, screaming, or flapping his arms.  He doesn't look different physically than other children his age.  And the truth is, he is a beautiful child of God and has the right to have friends, attention, and people love him because of who he is, not because of what he has.    

Just a Reminder! :)

I returned home from the store yesterday and my son was "helping" me empty the bags.  He found some shirts that I had bought for his big brother and was so excited!  He carried them around for about 20 minutes saying, "Oh, I love them!  I love them!"  Just another reminder to enjoy the simple things.  :)

The What is Where?

My son kept sneezing this morning, over and over, and I thought that he must be getting the cold that I am just getting over.  He finally looked at me and said, "Bean!  Bean!"  He had stuck a dry bean up his left nostril.  Luckily I could see it and got it out easily by running my finger down the outside of his nose.  I just hope it was the only one up there!

Where's the Money Tree?

Since my son's doctor recommended taking him off of all of his medications and supplements and doing more testing, we have pulled him off of everything except for his vitamins.  But they are very strong, and we are down to 1/2 dose per day.  We just haven't decided what testing to do now.  I read an article this morning called, "8 Facts About Autism the Media Is Not Covering" by Holly Robinson Peete.  Number one on her list:  "Autism Is Unaffordable."  It is very hard as the parent of an autistic child to decide just where to spend the money.  Therapy, bio-medical appointments and supplements, equipment???  Nothing, and I mean nothing associated with autism is inexpensive.

I am researching a new therapy called Floortime.  It promises great results, and it is mainly between parent (or sibling, babysitter, etc...) and child.  The question is, do I keep on with more testing and meds, or more occupational therapy, AND add in Floortime?  I was reading a report last night that stated autistic children who get 25 hours of therapy a week see the best results.  25 hours!  A one-hour occupational therapist visit costs $125.00.  We are one of the lucky ones that get some of that cost covered by our insurance after we meet the yearly deductible, but it still adds up fast.  Just a few days ago, I was researching a different therapy called ABA (Applied Behavior Analysis.)  I have even considered buying a DVD training program to learn how to implement this at home.  But everyone claims that their therapy, program, treatment...is the best!  A "can't do-without-solution!"  I understand that there is no cure for autism.  I know that my son will always have his quirks and possibly have very little verbal skills throughout his life.  But I want to give him every chance that I can to lead a wonderful life, no matter what that will mean in his world.  I never want to tell him at age 18 that I gave up on him at age 3.  I will continue to fight.  

It's the Little Things...

A couple of nights ago, my son was so happy because he got to eat oatmeal for dinner and then had new pajamas to wear to bed!  The simple things.  He actually took his pajamas and rubbed them on his cheek while laughing.  Adorable!  It warms my heart as his mommy.  I saw a teenager in Costco recently with his mom.  Now, I'm not sure that this boy was autistic, but it was just an educated guess.  He asked his mom what they were having for dinner that night.  When she replied, "Chicken," he got so excited, telling her that it was his favorite!  It made me smile.  Hopefully my son will always find joy in the little things.

Never Take It For Granted

Things that my son is doing that might be easy to take for granted, but I never want to:

1.  Using his language more, even if we still can't understand him!

2.  Using his sign language when we can't understand his "words."

3.  Remembering sequence of events.
     -eat dinner
     -brush teeth
     -pajamas
     -go to bed (he usually asks for his big brother to put him to bed)

4.  Following multi-step directions in order.
     -go to the kitchen
     -get daddy's water bottle
     -bring it to daddy

5.  Playing with and "taking care of" his little brother.  This is huge for us, especially since he would have never initiated these things just a few months, or even weeks, ago.


Okay, so maybe he's not perfect with these things all of the time, but he is trying.  He still struggles with his reasoning skills, but we are hopeful after watching the other things that he has shown us that he can learn to be safe, even though he doesn't have this natural instinct.



    

If You're Happy and You Know It...

I was hesitant to write this post too early in case it was a fluke, but I think we are seeing some improvement!  I had a phone consultation with the doctor a couple of weeks ago and she suggested that we take our son off of EVERYTHING, do some more testing, and start from square one.  I was, to say the least, scared to death to try this.  At first, I took him off of all except for his multi-vitamin and digestive enzyme.  Boy, did he have a tough few days!  But then one day we noticed a difference.  He was smiling and laughing again!  I eventually stopped the enzyme too (and ironically, trying not to be too graphic, his diapers have been nicer to change.)  His mood has leveled off too, even though he does have the occasional short tantrum still.  Mommy and daddy are smiling more; it had gotten to the point where we were very exhausted by the time our son would go to bed at night.  Now we are all having fun again.  My son will always have his quirks.  It's part of him, and most times those things are very cute.  But if he can be happy, we are all happy.  :)  Oh, about the testing and starting over.  For right now, we are going to hold off and give this a couple of more weeks to see what happens.  It makes us wonder if his body was just overwhelmed with the amount of supplements that it was being supplied.  Or perhaps it was just one single thing that was sending him over the edge.  We love our doctor, and she is doing her best to figure out this puzzle with us.  For now, we will stick with the smiles.  

My Son, the Broken Record

My son has a new stim, and we call it "the broken record."  He will pick a word and repeat it over and over again for, sometimes, hours.  He's always done this to some extent, but we've been able to, in the past, repeat the word to him and he will then change thoughts.  But lately we can't break the pattern as easily.  Usually it's not too big of a deal.  He'll start repeating, for example, "Car, car, car, car, car," and we can get him his car and he'll stop or come up with another word.  The times that we are running into a problem is when he starts repeating a word, say, "Cashew, cashew, cashew, cashew" (actually pronounced "Hashew") and we do not have that particular thing in the house, like when he finished all of the cashews yesterday!  And if I say, "I hear that you want cashews, but we don't have any.  Would you like some peanuts?" it throws him into a major tantrum.  But when the tantrum is over, he picks right back up with, "Cashew, cashew, cashew, cashew."  Maybe mommy needs a "nap, nap, nap" and some "chocolate, chocolate, chocolate."  :)    

I Love You, Too

I'm thankful for hugs.  Once in a while my son will run up behind me and give me a quick hug.  I know that most parents take this for granted.  I used to.  But now it is those little moments that make me smile.  With his sensory issues he usually won't allow me to hug back, at least for very long.  But when I can steal a hug or a kiss, I always do.  :)  We've learned that when he comes up and touches our arm, or lays his head down on our lap, even for the quickest second, that is his way of saying, "I love you."

Thank You Lord, You Knew What I Needed To Hear

We are still going through a very difficult phase with our son.  We are going on 3 months of this phase, even though it got better for a short time at one point.  And I'm only talking about perhaps a week of better.  He has hit a plateau with his speech, his behavior has regressed back many months, and his reasoning skills are still next to nothing.  But last night, we witnessed a small miracle.  We had just returned home from a trip to the mall, which is unusual for us to do these days with all of the kids.  But my husband and I had been talking about just living our life this year as close to the same way as we used to and learning how to include our son as best as we can.  He gets over-stimulated very easily, so we usually try to avoid crowds and loud noises.  This has been stressful on the rest of the family who needs some time outside of the house.  Anyway, we returned home late, already past our son's normal dinner time.  I sat him down in his high chair for dinner and started feeding him.  A couple of minutes later, he said, "Ouch!" and grabbed his tummy.  I asked if his tummy hurt and he said yes.  This really isn't surprising in light that he has always had digestion problems.  Another couple of minutes go by and he says, "All better."  That was it, "All better," and then the "miracle."  For the next probably 20-30 minutes, my son was speaking!  Non-stop speaking!  We were all shocked, and just sat around him listening and asking him questions.  He talked about the dog, and all the different sounds the dog would make if she were different kinds of animals.  He talked about colors.  He was trying to make jokes, and telling us to laugh.  My husband looked and me and said, "What did he eat today?"  I wish it were that easy, but really he didn't eat anything different.  Did the mall have magical powers?  I doubt it.  But I think God knew what I needed to hear.  I need to remember in times of stress that this beautiful little boy is listening, even if he can't speak, and he is absorbing everything like a sponge.  I will keep speaking to him and loving him unconditionally.  And maybe one day he'll be able to explain things to me.    

Christmas Stimming

Christmas morning.  A time of happiness, joy, ... and tears???  My son was not even remotely interested in looking what little gifts he received in his stocking.  No, the excitement made him break down, in tears.  We quickly remedied this by bringing his high chair into the living room.  He climbed in and enjoyed the rest of a wonderful Christmas morning.  We couldn't help but smile at his gift opening style.  He would hold each present for about 20 minutes, flapping his hands and smiling, until he would finally rip it open.  He would then throw the new toy on the floor and ask for more.  This continued until all of the gifts were gone from underneath the tree.  I think we all might learn a lesson from him; slow down and smell the roses (or at least enjoy the wrapping paper!)  :)