Thursday, February 27, 2014

Highs and Lows

It seems that with an autistic child, the highest highs are often followed with the lowest lows.

Happiness is great, wonderful, and fantastic, but when Caleb gets too excited or too happy, he can't quite control himself.  He will want to do something that he is not supposed to do and at some point, I am going to have to say, "no."  Then Caleb will have a meltdown.  This is why I prefer contentment or peacefulness to happiness.

For example:

Today, Caleb was insisting that he wanted to go into the kitchen (we have a baby gate up separating the dining room from the kitchen).  He was so cute and so persistent, that I eventually caved; I made him hold my hand because I didn't want him running to the dog water and splashing in it like he usually does.  Caleb always wants to run in the kitchen and splash in the dog water.  It is disgusting.  But, this time, Caleb held onto my hand and stayed away from the doggie bowl.

Caleb discovered the fridge and freezer.  Soon his new raison d'etre was to pull every frozen item out of our freezer and put it on the floor.  Strawberries, asparagus, brussels sprouts, all arranged to his liking on our faux wooden floor. 




But then, with the salmon burgers in his hand, he saw the doggie water bowl.  His eyes lit up and he dashed toward it.  I got there and lifted him away from the water before he got soaked and tried to redirect Caleb back to the freezer.  But, alas, Caleb had a new, shinier toy to play with and the freezer was old cow.

Eventually I had to hoist Caleb back over the baby gate and just put the food back in the freezer myself.

Caleb was beside himself.
He cried and screamed and threw toys and hit himself.
He had tears and snot streaming down his face.
I sat down on the floor without making a noise and reached my hand out to him, he was repelled by me, as if I were the most offense being on Earth.
But still, I gently brought Caleb over to my lap where I quietly told him that I understood why he was upset and that I respected his feelings.

I then put on baby crack, a la Giggle Bellies, and after 22 minutes of that, I mostly had my baby boy back.



5 minutes of happiness followed by about 30 minutes of shear meltdown terror.

Yeah, sometimes I don't know if it is worth it....

Sunday, February 23, 2014

Well.... Isn't that special?

In the past post I discussed how I can be suddenly aware of how different my life is versus the lives of other parents with neurotypical children.  And while I love Caleb and would not trade him for anyone, let there not be a doubt in anyone's mind that I would get rid of his autism if I could - in a fricking heartbeat.

My husband, Caleb, and I have settled into our own little routine, and looking at the lives of friends and their kids seems so foreign and strange.  You made cookies with your child?  You had a verbal argument with your daughter?  Your son helped you make dinner?  I'm sorry, I don't understand - are these real children or just super short adults?

The part that I noticed this past week is how strange we seem to other people.  My Great Aunt Ann had her 93 birthday party last night, and a lot of family from all over the country came to celebrate with her.  I had to call and say that we could not make it; Caleb is suddenly very attached to me and being away from both Albert and me for the duration of a party might put Caleb into a meltdown of disastrous proportions.  And, of course, there was no way we could take him to the party.  It seemed natural for us to sadly decline the offer, but my family didn't really understand why.  And how could they?

My birthday was on the 15th of this month.  When my Grandma asked me what I would buy for myself with the check she sent me, I said that it was going toward Caleb's expensive gfcf groceries.  She was surprised and called me sweet.  But really, I am not generous, I am just trying to make sure we stay in the black.

My mom tells me that she is proud of me for finding all of these programs that help Caleb - the Kaufman Center, Early On, and then we have our official evaluation at Henry Ford Hospital.  I also read tons of articles and books on autism, and that is why I decided to try the gluten-free/casein-free diet.  I am not doing anything special; I am just being a mother trying to help her son.

So, to others my actions may seem sweet or mysterious or silly or awesome, but honestly, I am just doing what any mother would do.  When we decide to get pregnant and have a baby, we make a contract with that baby to always put that baby first.  I am just honoring that contract. 

And to my family and friends who have amazing, beautiful neurotypical children, I do not resent the life you have with children, although at times I might envy it.  When Caleb is having his after-nap meltdown which requires a half-hour routine to cure, I envy you who can feed your children wet food, or trust your child not to run off away from you, or even are able to have a broken-English conversation with your child.  Yes, I do envy you.

But, right now, life is good.  I am not sad.  I may be a little stressed out and tired, but I am happy.  I can see the daily improvements in Caleb and my husband and I celebrate those wins. 

And with hope, hard work, and love, maybe one day, I will have no reason to envy anyone at all.

Oh, and for the record, I have no problem with you calling me awesome, special, or sweet.  promise.  :)

Wednesday, February 19, 2014

Caleb and His Kindle (sitting in a tree, k-i-s-s-i-n-g)


Therapy Rockstar

Yesterday I had a horrible migraine, so it was a freebie day for Caleb.  He didn't have to do any therapy that day - he could choose whichever activity he wanted.  He could even watch tv and play on his kindle at the same time.  He was so happy that I actually got about 2 hours of cuddle time, which is basically unheard of with Caleb.  It was wonderful.

Then today, Caleb was a rockstar in therapy.  We brought in some of his favorite foods for him to work with in OT.  He happily munched away on his snacks during food time and then was nonresistant during his therapy routines.  His therapist was blown away.  The plan is to keep working with these snacks and then eventually work in some of the foods he doesn't like because of taste or texture or whatever and get Caleb to eat them.  This how, hopefully, we will get Caleb to expand his palette.

Then, in speech therapy Caleb was calm, happy and focused.  Toward the end of the session, he imitated his therapist by clapping his hands after she did, which of course earned him tons of praise.  He was also good at putting his hands in her hands upon request and following through with directions.  Caleb's limbs with nice and loose instead of being stiff and resistant like he was in the past. 

The piece de resistance came when we were about to leave the Kaufman Center - Caleb was walking while holding my hand.  He was doing so well walking with me, I decided to see for how long Caleb could hold my hand.  Caleb was able to walk nicely next to me while holding my hand all the way to our car.  There was no resistance, no pulling, no sitting down.  It was incredible.  I nearly cried.

I told my husband about this, and he relayed to me a story where he wanted to go to Walgreen's, but he was with Caleb, and the idea of carrying him around the store the entire time seemed unbearable.  However, if Caleb were able to walk like a neurotypical, such a task wouldn't be an issue.

I, too, had a similar thought today.  I was watching Caleb through the one-way mirror, and it suddenly struck me that I was hoping that today my son might hold a toy hammer correctly.  Parents of neurotypical children don't have to worry about whether their child will ever talk.  They don't have to think about therapy and special gfcf diets.  They don't have to try and teach their kid over and over for months how to correctly hold and then swing a toy hammer.

It seems like such a different world, that of neurotypical children. 

I feel like right now, I wouldn't know what to do with a neurotypical child.  I am so used to Caleb's routines and his silence.

It is funny - when Caleb was a baby, all I could think was, "I can't wait to hear his voice and have him tell me what he wants."

Now, I understand Caleb's silence better than other neurotypical children's speech.

Monday, February 17, 2014

My Little Trooper!

The past four days have been full, full, full!

On Friday, Caleb and I went back to Farmington Schools (finally...) to meet with the evaluators who assessed Caleb for the Early On program.  If you recall, I did not have a good experience with them the first time (see blog entry Mr. Silly Pants and the Awesome OT).  Well, this time was completely different.  It was like I was meeting with totally different people.

During the meeting, the evaluators explained to me that while they believe that Caleb is ASD (and that Henry Ford will most assuredly find him so at our evaluation on March 5th), he is too young for them to diagnose as such.  Previously I heard them say that Caleb was not autistic and that annoyed the crap out of me; for them to recognize Caleb's autism but classify it as a developmental delay doesn't bother me.  Mostly I am just excited that Caleb is going to get the help he needs!  The most thrilling part for me is that he will have a group session which is with 3 other kids who are at his age and developmental level.  I think Caleb will get a lot out of that!

On a side note, I truly enjoyed talking with the evaluators.  We actually ran over our allotted time because we were talking so much.   Sometimes I forget how nice it is to talk to adults.

Then, later on that day, Caleb and I were playing on the floor.  He would roll around on me and eventually I would roll him onto his back and tickle him.  While he was looking up at me, I made a fishy face, and to my delight, he made the fishy face back at me!

This is a big deal because we are working on getting Caleb to imitate us both physically and verbally.  This is my first real success.  I thought I would see if it was just a fluke, so I repeated the process of rolling him onto his back, tickling him, and making the fishy face.  Again, my super star little boy made the fishy face back at me.  I decided to push my luck one more time, and yet again, Caleb imitated my fishy face. 

Well, at that point, my heart was soaring and my smile was from ear to ear.  I knew I had to share the news!  I think I called every family member and told them about our fishy face super star!  These little wins are so important.  Caleb works so hard everyday, and I do push him sometimes, I admit it.  But to have these successes just goes to show that Caleb's work isn't all for nothing.

I am really so proud of him.

Today he had an amazing day at OT.  He did so well that he is moving on to working with food on Wednesday.

My little trooper.

He is sincerely amazeballs.

Sunday, February 16, 2014

Bubbles

There is a lot of new stuff to post, but for now it is late and I am tired.

Enjoy Caleb and his bubbles.



Friday, February 14, 2014

What NOT to say

It has almost become cliche in the autism community:  your child doesn't look autistic.

Well, it is cliche for a reason.

I am so sick of hearing this.

What do you expect to see from my son?

Is he supposed to run around with his hands over his ears, screaming constantly?

Is he supposed to be rocking back and forth in some Rain Man rhythm?

And then I hear from other parents:  he looks just like a regular 2 year old.

Well, thanks I guess.  But, he isn't.  I don't know if they are trying to be supportive or if they think that I have the wrong diagnosis, but I don't always understand the motive for saying this.  And it doesn't really sound supportive.  It sounds judge-y.

I can understand how some people may think that saying Caleb doesn't look autistic is a compliment, but in reality, it isn't.  Because autism doesn't look a specific way.  As they say, if you have seen 1 child with autism, you have seen 1 child with autism.

Thursday, February 13, 2014

Going ahead with gfcf

Today I took Caleb to the pediatrician to go over his new gfcf diet and make sure that we are doing everything correctly.  I didn't know if certain supplements would help, and I wanted to check with her before starting anything.  Our pediatrician is awesome; she is direct and to the point.  She doesn't quite get autistic kids, so she is not very understanding of Caleb's diet, but she doesn't push too hard.

As per Caleb's diet, Caleb's pediatrician and I both came the same conclusion: the gfcf diet is working but we have to make sure he doesn't lose weight since he is already skinny; adding extra vitamins, minerals, and supplements can have some scary side effects so it is best to just add some poly-vi-sol to his routine; the gfcf diet is worth it for the GI improvements alone.

Overall, Caleb has been doing a lot better now that he has been on this gfcf diet.  In fact, on Tuesday morning while my husband was getting Caleb ready, Caleb was sitting on his rocking chair, looked up at his daddy, and said, "good."  This is a word that he would use all the time, but has since stopped saying.  It was so great to hear about bits of out old Caleb coming back to us.  I can see how frustrated Caleb gets when he cannot properly express to us what he wants.  I so look forward to the day when Caleb can actually use his words.

That day will be a miracle for all of us.

Monday, February 10, 2014

OshKosh B'monkey

We got some very thoughtful gifts these past couple days!  My husband and I are very touched.

On Sunday, my in-laws came over and they had some awesome Valentine's Day gifts for Caleb.  First of all, they gave Caleb the complete collection of Nancy Tillman's books, which are all very beautiful, very sweet, and very welcome in our house.  And anyone who knows us knows that we love books!  She also brought Caleb a doll and a backpack to see if it would further his interest in working with figures.  Last but not least, she bought Caleb these OshKosh B'gosh overalls that were "just like Grandpa use to wear, working the fields."  When Caleb tried them on, my husband agreed that Caleb looked just like Grandpa, except, you know, 2 years old.


Then today in the mail we get another unexpected gift, this time from my husband's sister.  She was recently in Japan, and there she found this towel and thought of us.  I have to say, this towel is so perfect, I started to tear up a bit.  The gift was very touching; even the strawberries are perfect because Caleb has a love affair with freeze dried strawberries.






It is really nice to have a family that is so thoughtful and sweet.  And yes, I don't need gifts to know that I am loved, but sometimes they act as visual reminders when the words are too far away.








Sunday, February 9, 2014

Snickeryoudle.

I have read that after a few good days on the gfcf diet, a child will become nice and whiny.  Well, it is good to know that my child is finally hitting milestones right on time!  Yup, on Friday, Caleb became the whiny whinerson that whined. 

I decided to take Caleb grocery shopping for some more gluten-free/casein-free foods, since at that time his diet was pretty limited. We first went to Meijer and I was pleased to see that they have a whole little section of gluten-free items, many of which are made for people who also do not want dairy in their food.  However, Caleb was soooo noisy; I was terribly distracted while reading labels. 

His cries and moans were constant, and I was desperately trying to keep him complacent with a steady stream of gluten-free pretzels.  I frantically switched between shoving pretzels in my toddler's mouth and looking at the ingredients in these strange, new foods by companies I had never seen before.  Eventually I just grabbed what I thought was a good range of products and headed to checkout. 

When I got home, I realized that I had bought 4 bags of pretzels (they were 40% off!) and 6 boxes of cookies. 

Seriously. 

wtf.


Btw, the Trader Joe's allergen-free snickerdoodle soft-baked cookies are totally yummy.
But everything we got by Enjoy Life tastes weird....
like someone accidentally dropped a bar of soap in the mix or something...

Thursday, February 6, 2014

Caleb eating an actual apple!


Penguins are now my second favorite animal

Today was another good day.

Our friends Audrey and Damien came over to play, which is always fun.  Caleb interacted better with Damien by being more inclusive in play, doing a lot of hugs, and not being possessive of toys.  Caleb still engaged in some inappropriate play, namely hugging Damien head first so that it looks like a headbutt, and trying to sit on Damien's back when Damien was on all fours.

Overall I am sincerely impressed with the improvement of Caleb's behavior, and it is hard not to attribute it to the change of diet.

Another interesting note is that while Caleb isn't drinking more fluids, he is peeing more.  It seems that gluten allergies can cause dehydration.  I wasn't expecting Caleb's extra flow, and earlier today he totally overflowed his diaper and soaked his pants.  Oops...

This afternoon he ate more bits of apple.  So cool.
He napped for 3 freaking hours and I then had to wake him up so he would go to bed at a reasonable hour.  Amazeballs.

THEN.
Caleb was playing on his Kindle Fire - it was some app where a cartoon animal appears and then it has the written name of the animal, it says the name of the animal, and the animal makes a sound.

The Kindle said, "Penguin."
Caleb then opened his mouth and quietly but purposefully said, "Pen-gi-en."

Kid. You. Not.

I nearly fell over.  I sat there slack-jawed and all stupid-like and then called for my husband.  I explained it to him, and he exclaimed, "NO WAY!"

And then we didn't know what to do with ourselves because this awesome little moment came and went and we wanted to make it last as long as possible.  So, we just were still, waiting for something else to happen, but nothing did. 

So, I called my mom and relived the moment again.

Truth is, there will be more moments like this one.  I have faith that there will be.  Some people have faith in God or Jesus or Angels.  I have faith in Caleb.  After all, he is my favorite monkey.

Wednesday, February 5, 2014

gfcf is drama free

Tuesday while I was at MHNI, my husband took my son across the street to Whole Foods and picked up a bunch of gluten-free/casein-free foods for Caleb.  Some were hits (the pretzels, cereal bars), and some were misses (freeze-dried chickpeas, crackers that had whey in them).  But overall, we got enough stuff to start Caleb on his new gfcf diet.

We had already replaced his regular milk with soy milk, which was easy enough since I drink soy milk.  I know that some people also do soy free, but that shit is crazysauce.  Basically, then you are reduced to eating no processed foods at all, which is fine for adults, but for an autistic kid who only wants pretzels, my child would starve.  Seriously.

Already on Tuesday we noticed a difference.  While shopping, we fed him snacks he had on hand that were already gfcf.  My husband had to keep him occupied while I was at my appointment, but it seemed easier for Caleb to be patient and happy for longer.  I was even able to stop at Beaumont for a blood test and then at Walgreens to drop off some scripts before heading home.  All in all, we had been on the road from 8am until 12:30pm, and my son was still in a good mood.  Insane.

Later that day, he seemed in a good place, so I thought I would do a little therapy homework with him.  I started with the hardest first: the puzzle.  I could never get him to sit still in my lap and work a puzzle with me.  Well, that day, he did it.  We then did the stacking rings, and he never got frustrated or angry; he concentrated and had fun, and when he was done he didn't kick or throw things, he simply walked away.  He went into the other room, so I thought I would push my luck once more - I called for him to come to me.  I called out twice and waited, and then I heard his voice getting louder; for the first time in 2 months, he came right to me when I called for him.  I hugged Caleb and praised him, and decided that I should stop testing him, because it really couldn't get any better than that.

Today he woke up early from a nightmare, around 5 am.  After some sweet daddy cuddles he went back to bed, and then was back up at 7, and back to his sweet happy self.  There were no real changes to his behavior, but he was just calmer than usual - Less freak outs and tantrums.  Then he pooped (and sorry this is gross, but it is important) and he had a normal, soft poo.  Usually he is constipated so he only poops every 2-3 days, and when he does he can hurt himself.  This was different - it was normal.  Amazing.

Then, during my morning snack, I had an apple.  Caleb climbed onto the table and touched my apple.  I offered him a piece, and to my shock, he ate it!  I offered other small pieces, but he didn't want them.  Instead, he grabbed my big piece of apple (about 1/3 of an apple) and started licking it.  He put it in his mouth, and over the course of 5 minutes, ate the whole thing.  He hadn't eaten an apple since the summer, and he usually can't stand to touch anything wet like that.  Albert and I were amazed.

At dinner, he ate fries (baked, not fried), which again, he has refused to eat for months.  In addition to his improved eating habits, today he has not had any violent episodes, no major breakdowns, no real drama of any kind.  I mean sure, he uses his intonation to communicate need, so he may sound more in distress at times, but his physical state does not convey that distress.  His body has been looser, allowing me to manipulate his hands when I show him the proper sign language.

So, this all sounds too good to be true.
I am very much waiting for the other shoe to drop.
But, if it doesn't, then it is really good for now but I also worry about Caleb as he grows up.
Poor Caleb won't be able to eat a good chocolate bar and I won't be able to fix his fever with matzah ball soup.  He can never eat fast food with his buddies.

But, for now, at least he has gluten-free pretzels.

Monday, February 3, 2014

GFCF?

Caleb's occupational therapist has reminded me several times to look at a particular instance of Caleb's behavior and see what precipitated the event, what happened during the event, and what happened after the event.  Perhaps then I can start to pick up trends, seeing if there is a common theme as to what is happening before, during, or after Caleb acts out.

When looking back at Caleb's behavior over the past week, I have noticed that Caleb's outbursts have followed his meals or snacks.  Even a quick munch on some pretzels would coincide with Caleb acting aggressively or moody.

I have read about autistic children having success on a gluten-free/dairy-free diet.  It seems that autistic children have a more sensitive system than nuerotypical children.  Gluten and dairy can not only disrupt their digestive processes, but it can also affect their cognitive functions, behavior, social skills, and speech.

The gfcf (also called gdf) diet has not been empirically proven, but there is sufficient anecdotal evidence to suggest that this is a method worth trying.  If we are willing to spend money (lots of money, honestly) on therapy, and work on speech therapy and OT at home, why wouldn't we do everything in our disposal to make Caleb better.  Especially if the change we are to make is relatively easy.

These days there are so many gluten-free options, I am hopeful that we are able to find many suitable replacements for Caleb's favorite foods.  As for his bottles of milk, we are going to substitute soy milk.  Some parents also give their children magnesium and vitamin B6; we will be talking to our pediatrician before we make any such changes to Caleb's intake.  For now, Caleb will continue taking Poly-Vi-Sol and I would like to find a replacement source for DHA.

Here is hoping that gluten-free food doesn't taste like sawdust. 
Oh, and that it doesn't cost us an arm and a leg...