Answering "The Question"

It's an interesting question when someone asks me, "I don't know much about autism, what is it?" I usually rattle off my normal response, something like, "It's a disorder where the brain doesn't speak in a 'normal' way to the body." Sometimes I'll make it more personal to my son, "Imagine a 3-year-old in a 6-year-old's body." But lately I was asked this same question again, and I realized that there is no "right" answer. Every autism parent you ask is going to have a different response, because autism does not present itself the same way in different children.

So right here, right now, I am going to give you a glimpse into my son's life. His brain, his body, his strengths and weaknesses, his likes and dislikes...

Immediately after his diagnosis, I went into "protective" mode. I shared information only on a need-to-know basis. But I quickly moved out of this phase and started sharing "general" information with the people around me and my son. Now, I give you my son...

The Brain (The Learning Center):
*He has an incredible memory. He remembers everything he hears about animals, especially African and Ocean Animals. He remembers details from trips, parties, toys, etc...from years earlier.
*His comprehensive language is awesome. He understands most everything that we say. He is great with his vocabulary words that come home from school.
*His verbal language struggles a bit, but he is verbal. He gets frustrated sometimes when he can't think of a word or how to ask for something that he wants. Wouldn't we all? He is also in speech therapy at school to help with the sounds of his letters.
*He struggles with reading, but just recently made a break-through! He is finally starting to sound out small (2-3 letter) words! This gives me a lot of hope, because you can see how hard he's trying and how much he wants to be able to read.
*He sometimes "loses" the numbers in his brain. He is getting much better at retaining his skills, but it used to be that he could count to 15 one day, and the next barely make it to 5.
* Not sure if this is the right category for this, but my son also has anxiety. He takes a natural medicine called Rescue Remedy when he is anxious, and it helps him enough to get through a new or scary experience, or any time when he is just nervous about trying something.

The Body:
*He is in occupational therapy at school for his fine motor skills. He has a hard time writing small letters and numbers, and his hand gets tired quickly.
*He may appear a little clumsy, but it is because his leg and core muscles are a little weak. We do a lot for this, especially in the summer, like horse-back riding and swimming. He is also in adaptive P.E. in school.
*He is allergic to dairy (makes his tummy so sick!) and highly sensitive to gluten (affects his behavior). He also gets hyper when he eats anything artificial (especially those nasty colors), so I try to avoid those things.

The Senses:
*He has sensory processing disorder that goes along with his autism.
*Certain lights, those that buzz or are too bright, bother his eyes. He does not like trips to our local public library because of this.
*Loud sounds can make him upset, but he is learning to leave the room or cover his ears.
*He likes to chew on things. Recently he lost his first two baby teeth, and that week he chewed holes in many sweaters and shirts. It was my teenage daughter who finally realized that he was "teething" just like an infant would -- smart girl!
*He likes to spin, jump, flap his hands and arms, and sometimes make loud noises with his voice. There are wonderful books about sensory processing with all of the technical terms for all of this (I recommend one called The Out of Sync Child).

The "Sometimes I Get a Little Stuck" Issue:
*I'm not sure where to list some of the following issues, so I came up with my own title...
*He reacts to things with a lot of Ta-Da!!! If he is happy, he will sometimes laugh uncontrollably (the cutest laugh ever!), and scream in excitement. But sometimes when he is very upset, he will have a tantrum (just like a toddler). And once in a while, it will turn into a meltdown (luckily these have decreased in frequency as he has gotten older.)
*He is curious, and may take things apart, especially toys. I have to make sure that toys are safe (no sharp parts) and can be chewed on. He is still learning how to play with toys appropriately...playsets don't always make sense to him and many times he'd prefer to line the objects up or group them with other "like" items.
*He is still working on potty training. We were told by his psychologist that the average age for a child with autism to be potty trained is 7. He is making good progress in this area.
* Even though he understands what he is being told or asked, he can take a few seconds to process it and give an answer or response (maybe this should be under "The Brain?")
*He doesn't understand the concept of time. Today he was talking about our trip to the beach, which happened months ago, but he was referencing it as happening yesterday. He will sometimes fall asleep for the night way too early (a couple of hours before bedtime...but, trust me, you don't want to try to wake him up!) and he wakes up early. I try to get him to sleep until 6:00 a.m., but he doesn't understand if you tell him at 4 in the morning that it is still nighttime. Sometimes another spray of Melatonin (natural sleep aid) will settle him down for a couple of hours, but, if not, the iPad is a miracle so mommy can get some more rest!
*He doesn't understand safety issues, although it's getting better. I have locks on the front door up high, and a gate on his bedroom door at night so that he can't "escape" and get hurt. He never plays outside alone. And I put him on the bus in the morning and meet him at the curb in the afternoon. He took swimming lessons last summer, but never really "caught on," but he thinks he can swim now...scary!

His Likes:
*Playing with siblings, cousins, and friends.
*Rough-housing, as long as he is in the mood to play.
*Eating (I am blessed in this area since most children with autism are a lot more picky than he is).
*Watching his favorite movies, over and over and over (currently Monsters University and Cloudy With A Chance Of Meatballs 1 & 2)
*Playing on his iPad.
*Going to the Zoo!
*Going to the Aquarium.
*Playing outside, especially water play!
*People who stay calm with him, especially when he is having a rough time.
*Riding the school bus!
*Any toy animal, big or small
*Paper Airplanes
*Toy Cars, especially remote controlled ones.
*Train sets
*Building Toys

Therapies:
*We've tried all kinds! Including the following...(I will not mention the ones he currently receives in school, most which have already been mentioned in this post...)
*Floortime
*Occupational Therapy
*Equine Therapy (Horse)
*Bio-Medical (DAN! Doctor)
*Psychologist
*Psychiatrist
*Currently we only see his psychiatrist (outside of school), and was just cut down to every 3 months since he is making such great progress! Yay!

The Future:
*I'm not sure if he will ever be able to drive a car.
*I'm not sure if he will ever be able to live completely alone.
*I'm not sure if he will go to college, or hold a full-time job.
*I AM sure that he has made incredible progress. He works so hard to accomplish the things that most of us take for granted.
*He will always love his family, because of his sweet innocence. And we will always love him.

I'm sure there is so much more to share, but this seems just right for now. My son loves welcoming people into his world, and showing them life through his eyes.

Links To Cute Cartoons Explaining Autism and Sensory Processing Disorder (SPD):

http://livingwithfasd.files.wordpress.com/2012/07/376426_10150992284126575_1452717755_n1.jpg

http://rockinmomsworld.files.wordpress.com/2013/06/spd.png

http://sunflowercyn.files.wordpress.com/2013/03/20130328-002722.jpg?w=547

http://www.kathiesworld.com/wp-content/uploads/2012/08/new-chart.jpg

New Journey

I had a surreal experience the other day. Let me back up and tell you that my son is in public school for the first time ever this year. We finally decided on trying out an autism classroom with him and, so far, it is turning out to be a positive experience. But, back to my original thought, the other day was back-to-school night. I showed up at the school just like all of the other parents. I passed the PTA table, and the spirit wear table where they were selling t-shirts and other items, all in the school colors. I sat in the large auditorium and looked around at the many parents, students, and teachers who were there. My son was at home with his big brother. I sat and listened to the principal give her speech about curriculum, grading, spirit week, etc... I listened to the PTA president talk about new programs that they are supporting in the classrooms this year. I watched and clapped as they introduced each teacher and what grade they would be teaching. My son's classroom had 3 women introduced, 1 teacher and 2 aides. There are only 7 children in his class. I was there, I participated, but, unlike most of the other parents, I went to the special needs classroom at the end of our group time in the auditorium. As I walked through the bustling, loud hallways, I felt like I was in a bit of a daze. My son is so little, so vulnerable, so dependent on others still. And then I walked into the quiet of his classroom and I was greeted by 3 wonderful women with warm smiles at the door who all knew my first name. And, unlike what I pictured was happening in the other classrooms that evening, it was like life slowed down in that instant. As other parents, and some of the children who are my son's classmates, joined us, our conversation turned toward making friends, eating habits, IEP's, and even poop. Yep, that is what you will hear in an autism classroom. Talk about diapers, potty time, and schedules. Talk about food allergies. Talk about routine. Talk about therapies. And in that moment I realized that this is where I was comfortable. This is what I knew. This is what so many years of parenting this special little boy has taught me. That I was meant to be his mommy. And he was meant to be my son. And we will go on this journey together this year.

Do I run? No, not me. I pick up toys...

My son insisted that every toy be removed from his room tonight before he would go to sleep. I could see it was actually going to build into an anxiety attack before I agreed to move everything into his brother's room. Well, at least I get my exercise!

Mmm...Breakfast Anyone?

My son's breakfast of choice this morning: apricot (pronounced "paper cut") soy yogurt, kalamata olives, and tortilla chips. An interesting combination, but I guess it could be worse. :P

Why Lighting It Up Blue Is Important To Me

April 2nd is World Autism Awareness Day, which kicks off Autism Awareness Month through April. Autism Speaks encourages people each year to "Light It Up Blue" by replacing your regular lightbulb on your porch with a blue one for one day (April 2nd). You might be asking yourself, how can lighting up my house with a blue lightbulb help in the fight against autism? To me, it's more about awareness and understanding of this mysterious disorder. What would happen if everyone took a day to become more aware of autism? There might be fewer people staring and making rude comments to parents fighting to keep their autistic child calm at the grocery store and other public places, there might be more bills passed to assure that insurance will cover treatments for these beautiful children, there might be more parents who would recognize the warning signs in their own children and get early intervention treatment so that their child might live the best, fullest life possible. What is my hope? That each of my friends and family would take a moment to learn more about autism. There are many websites that offer wonderful insight...a couple of my favorites are autismspeaks.org and reallookautism.com. And then head to Home Depot this week and buy a blue lightbulb to light up your porch on April 2nd. Tell your neighbors why you are doing this and encourage them to learn more about autism. You will not be alone; many prominent buildings and landmarks will also be lighting it up blue, including the Empire State Building, Niagara Falls, the Sydney Opera House, the CN Tower, the Cairo Tower, and Rockefeller Center. Will you pledge with me to open your eyes to this epidemic that now affects an estimated 1 in 110 children, including 1 in 70 boys? (And many believe that these are very conservative estimates.) Thank you, from me, my son, and my entire family!

Welcome To My New Reality (Or, Still Open For Business During Construction)

I know, I know...us autism mommies are supposed to have super powers, able to handle it all with a smile. I have to admit, my patience has grown by leaps and bounds in the last 3 years, even though sometimes it may not show (probably especially to my older kids), but I can feel it. There are days when I can read other autism blogs and feel proud to be in the company of such awesome people. Others who are proud because their child is potty trained, finally at age 10. Some are sharing the fact that their child slept through the night, or tried a new food, or didn't spit on anyone that day...and, trust me, they have a right to shout it from the rooftops! Those are big deals! All of them! And I blog about those things too. It's what keeps us from going insane and lets us remember the huge progress that our children have made from the time of diagnosis. But then there are the days when, yep, reality sets in. It's not invited, it just kind of creeps in and plops down on the couch by you. And then the train of thoughts starts running through your mind. The realization that you have a child that will be dependent on you, forever. Forever is a long time. Days are changed, routines are changed, friends are changed, vacations are changed, "downtime" is changed, reality, as we knew it, is changed. And it is not necessarily always a bad thing, but change can be scary. And when you have a stubborn personality like I do, well, change can be a hard thing to swallow. But I work on my flexibility every day, my spontaneity, and my "super powers." All because I love my son and he loves me. How do I know he loves me? Well, today I had allowed my eyes to close while he was playing near me on his iPad, and soon I felt a warm kiss on my forehead. Yep, it's all worth it. Even if my idea of reality is changing.

Thank You...For All Those Who Don't Run Away

I have never announced my blog publicly. I've been writing about our life with autism since 2010, and something still keeps me from "putting it out there." This post may change things...(we'll see how brave I am...)... We had friends over to our house last night that we have not seen in 8 years! 8 YEARS! With moving from here to there, we just haven't lived close enough to easily catch up before now. Okay, why am I telling you this? Because it was their first chance to meet our little boys. One "typical", the other autistic...both perfect in their own way. After they left, I found myself feeling very grateful and wanted to tell them Thank You, very loudly! You see, they didn't get scared off when my son (who will be 5 in the summer) suddenly needed a diaper change in the middle of our conversation. They didn't look at me in a judgmental way when he started screaming because of the new noise in the house. They didn't even shun him when he started spinning and didn't want to stop. And best of all...they asked questions! Yes, they wanted insight into our life with autism. They asked beautiful, thoughtful questions about why he doesn't feel pain, how he learned to be affectionate, what his language skills are, and how the siblings are involved. So thank you to this wonderful family (they know who they are), and all people like them who open their hearts a little more (and don't run away!)

Can You Say INTENSE?

Wednesday was my son's "extra stimming" day, today was his "extremely intense" day! Everything he did today had added intensity...If he was spinning, he spun so hard that he would throw himself against a piece of furniture or against the corner of the stairs (yes, I think on purpose)...If he wanted to watch a certain show, he repeated his request very quickly and loudly while flapping his hands constantly...If he didn't like a certain food that he put into his mouth, he spit it out vigorously and threw the rest of it on the floor...You get the idea? I'm actually surprised (and very grateful) on these kind of days that he will settle down at bedtime, after his Melatonin of course. He's either going to keep me young, or make me old very fast. ;)

Stim Away, Baby!

My son was super stimmy today. I mean totally extra stimmy! But very, very happy! In fact, I think I've linked stimming days to happy days. If you haven't been exposed to the word stim (self-stimulating) yet, think of hand-flapping, jumping, spinning, head banging, spitting, licking, bouts of screaming...well, you get the idea. This momma is tired and glad it's bedtime, because it is exhausting to watch and keep up with all of that stimming! :)

Therapy Notes

I realized during a therapy appointment this week that I should probably be taking better notes afterwards. I think I tend to take some of the advice in and use it, but I think so much of it just slips my mind until it's mentioned again. This was the first week in a long time that my husband couldn't be there with us, so I really am trying to remember everything that was said so that I can share it with him. The therapist suggested picking up a book for potty training since our son is showing some interest now that little brother is (almost) out of diapers. You can find the book here: http://www.amazon.com/Toilet-Training-Individuals-Autism-Developmental/dp/1932565493/ref=sr_1_1?ie=UTF8&qid=1327546385&sr=8-1 . She also told us that we should be looking into occupational therapy again for him sometime in the next 6 months or so. Mainly to help with fine motor skills, such as writing and drawing. Speech therapy has also been mentioned in the past, but she doesn't think he'd benefit from that until he can learn to get a handle on his anxiety better and start trusting more people. Other than that, we talked some about the changes in diagnosing autism spectrum disorders, and the bill that is on the agenda in our state to get insurance coverage for autism. Neither one of these issues should effect our family too much (although I think everyone should fight for insurance rights) because my son was diagnosed with classic autism very high on the charts (from what I understand, the changes will mainly effect those diagnosed with aspergers or pdd-nos), and my husband's company that he works for is out of state, therefore our insurance is out of state. Wow, what a boring post. Are you still reading? That's all my rambling for now...until the next appointment.

Oh No, It's Happening! (Or, What Happens When the Melatonin Stops Working)

Oh no, it may be happening. We have been warned, we have been told to enjoy it while it lasts, we have been told that things will change, but, maybe secretly, we denied it. Our son has been on Melatonin for a year and a half now to help him with sleep issues. It has made a huge difference and we have enjoyed, on average, our son sleeping for 12 hours a night! He never stops during the day, so half of each 24 hour day sleeping seemed about right. But we've also been told that Melatonin can stop working. Oh, I've read many blogs where mommies and daddies are frustrated with the sleep issues that go along with autism. I've been there, I thought...it used to take my son 2-3 hours to calm down enough to fall asleep, and then he'd be up early in the morning (6 a.m., way too early for this mama!) But then came this miracle, Melatonin, which allowed my son to drift off in about 10 minutes and sleep longer in the morning. The dreaded change all started 4 nights ago. It was the middle of the night, 3 a.m. to be exact, when I heard noises in my son's room. I walked into the hall and noticed that his light was on. When I opened his door, he was wide awake standing at his door with his stuffed monkeys waiting for me to come get him. He looked at me with a huge smile and said, "HI!" I turned off his light and in a very quiet voice told him it was still night time and he needed to go back to sleep. I put him back into his bed and, after a drink of water, he got quiet again. The next night he slept until morning and I was cheering inside thinking the night before had just been a fluke. But no such luck. The next night he was up again, wide eyed and ready to play, and again last night. Luckily, after turning off the lights and quietly accompanying him back to bed and giving him a drink, he is still drifting off again. But I am worried for the night where he decides not to settle, and that becomes the new norm. I am worried about the extra lack of sleep that this new issue will create. And I am worried that I may never sleep another full night again, ever.

Update On Our GFCF/Egg-Free Diet

Just a little back story...we were seeing a DAN (Defeat Autism Now) doctor before we made a move to another state this summer. We were trying all kinds of biomedical treatment, including different diets. I have written a lot about this in previous posts, but wanted to give a quick update. A gluten-free, casein-free diet is very popular in the world of autism. It is believed to help with lots of things, including speech and digestive issues. We first pulled our son off of gluten around age 3. We immediately noticed a change in his communication; he seemed to have more speech. Our son was in a little bit of a different boat because he tested positive for allergies to dairy and eggs. So not only did we cut out dairy (casein) next, but also eggs. Our son has pretty much consisted on meat, nuts, vegetables, fruits, and rice products for a year and a half. Before we moved, it was suggested by the DAN doctor that we could slowly introduce some of the off-limit foods back into our son's diet, even those that tested positive for allergies, to see how he did with them. When we got settled and started seeing a therapist in our new area, she suggested the same thing. We first reintroduced eggs and, guess what? He did great! He LOVED this new food that he hadn't had in so long! Behavior stayed steady, and no words were lost. After a few days, we decided to move onto dairy. Whew! That was not the same story as eggs! His behavior went out of control and he became very rigid (stiff!) and aggressive. We gave it a few days, just to make sure he wasn't just having an "off" day, and then stopped all dairy again. We saw one more really bad day after that, and then it was back to "normal." We were into the holidays by this point and decided that we really didn't have the time to deal with extra bad behavior while balancing so many other things, so we waited. On New Year's Eve, we started giving him gluten (a component of grains and cereals.) Let me preface this by saying how expensive gluten-free food is, so we were really hoping this would work! And, guess what? We have not seen any negative reaction! Yay, two out of three's not so bad! I will try dairy again in a little bit to make sure it wasn't something else that was getting to him. But I am so happy at this point that he can eat a little more normal! And he loves it too!

The Good and the...Not So Good

I keep being told that things will get easier as my son gets older. So I wanted to reflect back and list some of the things that truly have gotten easier, and maybe some of the things that have gotten harder, over the last few months. The good list: 1. My son has actually started using his imagination! It took a long time, but at 4 1/2, I can say that he is finally playing with his little brother. It is usually the same story or game...spiderman, "cooking", hide-and-seek...but, nevertheless, it is play. 2. He seems to be easier to reason with. Or maybe bribe? If you don't stop "x", then you can't have "y". He does not remember consequences for the most part, and sometimes (or most of the time?) rules go in one ear and out the other, but we can get through to him with a little less chaos. Which brings me to my next point... 3. Tantrums and meltdowns are shorter. Oh, yes, we still have them...loud, kicking, screaming, hitting, crazy meltdowns...but they are, for the most part, getting shorter. Maybe it's because of the bribing??? (See number 2) :) 4. He is able to communicate better. No, a stranger could probably still not understand most of what he says. But he has learned to use the words or signs that we understand to ask for what he wants. I know that we are extremely lucky in the fact that he is not totally non-verbal. And his baby brother understands him completely! Seriously, I think they just have that connection! 5. He is easier to take out of the house into public, as long as we remember that the trip has to stay short and simple. And, even then, it's sometimes not predictable what will happen. We've learned that it's okay to make a quick get-away. Along with the good comes...the not so good: 1. His screams have gotten more ear-piercing, if that is even possible. The older he gets, the louder his voice can go. And he really loves to scream. It's his way of saying, "Hey, I am frustrated!!!" 2. He is strong. Not that being strong has to be a bad thing, but when he gets mad...well, it's hard for me at times to control him so that he doesn't hurt himself without getting hurt myself. Again, the older he gets, the stronger he gets. That's just reality. 3. He is licking everything! I knew that this was a very common trait of children with autism, but we had not seen a lot of it up to this point. He mouthed things in the past (still does), but the licking is fairly new. Anything and everything gets licked, including us...yuck! There's my list for now. I should probably revisit it every few months, just to see the progress (and maybe some of the regression) that we have made. Let's hope the progress wins out!

Perfect Enough for Me!

Okay, let me start by saying that I have gone waaaayyyy too long between posts. That being said, maybe we can play a little catch up? I pretty much have the entire holiday season to cover (but I'll try not to bore you!) Let's see what happens... HALLOWEEN: My youngest ("typically developing") son had been talking about this day for weeks. He had chosen both his and his brother's costumes. He would be Woody, his brother Buzz (from Toy Story). Let me also say that my autistic son had no idea what was about to happen. We had talked about it and read tons of kid's books about Halloween. We had talked about costumes and candy and trick-or-treating. But he never talked about it. I was happy for his excitement when we went to pick out pumpkins to decorate. He actually chose one that was grayish in color; I'm not even sure it was a pumpkin to tell you the truth. Maybe some kind of a gourd? And he loved decorating it with "Mr. Potato Head"-like decorations...ones that you just stick into the "pumpkin." And then the "actual day" rolled around. He let me put him in his costume, and was even excited about it! (We were very careful when we picked his costume to choose a very smooth material that was intended for pajamas.) My husband and I had planned the evening very carefully. We would take the two little boys out together. We would take our son just around to the houses in the circle, one of us would come back home with him, and the other one would take little brother out until he was ready to come in. First house...our son was very excited! He ran to the door, watched little brother knock and say trick-or-treat, copied him, and collected his candy. And so it went from house to house in our circle. When we were through with the houses on our street, we asked our son if he was ready to go home. He said no. So we made a quick decision to let him keep walking around with us and little brother a little bit longer. He made it the entire time with little brother! Yay for the first holiday of the season!!! THANKSGIVING: The big dinner was at our house this year. We knew that this could be a very overwhelming day for our son! LOTS of people. LOTS of noise. LOTS of food! Our son loved the appetizers that we laid aside especially for him before everyone arrived. He even moved a chair into the hallway and used the table in our entrance to snack on. He actually did quite well until dinner was served. He and his little brother had high chairs set up next to the grown-up table. Well, maybe he had eaten to many of those appetizers, because he did not want his dinner. After a little bit of a fuss, he settled into his high chair with the iPad. I think I've mentioned before how much I love this device!!! As in, it is Heaven-sent! It turned out to be a very nice day. Yay for the second holiday of the season! Can this luck continue? CHRISTMAS: The big one! Here we go! We decided to put up not one, but two trees this year. We were nervous, because it was the first year that our son would actually have access to the trees at all time. In our new house, we don't have a formal living room that we can gate off. So one tree went in the living room, and one in our sitting room. Both rooms are big hang-out spaces for our boys. With fingers crossed, the trees went up and the ornaments went on. Anything breakable was placed up high so that nothing could be broken easily and no one could be hurt. After the initial curiosity, the trees, for the most part, were left alone, the entire season! Wow! I really did not see that happening for many years. Our next big hurdle? Christmas morning. We knew from years past that our son did not enjoy the excitement at all. He does not have a great understanding of what or why things are happening. But, again, he very pleasantly surprised us. He ran to his stocking and started going through it. (If you want something to compare it to, check out my post from January 5, 2011.) And when it came time to open presents from family, he patiently and excitedly waited for his turn to open each present! We also had a lot of family over on Christmas and did a big gift exchange with all of the cousins. Our son ran around, a lot! But he did it with a smile on his face. Yay for the third, and final, holiday of the season!!! (We are not going to include New Year's Eve because, let's face it, my husband and I would have to be declared clinically insane if we tried to get our son to stay up until midnight to celebrate with us!) This season gave me a very important gift: the hope to look forward and feel encouraged that things are going to keep getting better and easier. The hope that everything we are doing for our son is making some kind of a difference. The hope that he will someday (maybe next year?) understand why we are celebrating and be able to anticipate (maybe even with excitement?) what will happen next. Now, don't get me wrong. Not everything went nice and smooth during this season of celebrations. Not every surprise was met by a smile. Not every visitor was greeted with a hug, or even an acknowledgement. No, it wasn't perfect, but it was perfect enough for me!

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