Love the Child You Have Today

I got some great advice from a friend who told me, years ago, that you have to love the child you have today. I’ve generalized that to other things like “love the body you have today” which helped during my not-so-flattering pregnancies, and I think it might be the soundest, most calming advice I’ve been given.

But I’m not very good at it. I am the person who always looks at what’s coming, what’s down the road. I’m rarely satisfied, which means I push myself and others  until, oh wait it just keeps going, I push and push some more.

With Holds it’s been a lesson in parenting to watch him be different. To watch other kids get annoyed with him because he’s not “connecting” to their conversation. To watch him struggle so hard with transitions and change. I truly love my child, but I still find it hard to believe that he’s always going to be different. I am working really hard to help him, but sometimes I wonder if I’m doing it more for me than him.

Yesterday at his school Christmas program, I realized that I was THAT mom. The one with the weird kid who couldn’t hold still during the program, who made  strange arm movements completely out of step with all 14 other kids. The one who couldn’t contain his body from moving and dancing to some of the songs – while the other children stood stick straight. I am the mom who every parent turned and sympathy smiled at because her kid was the oddball.

I try daily to minimize the differences between Holds and other kids. I assist him in his conversations, prompt him constantly, and try to bring him into a relevant interaction. I am so good at it, that I can forget that he’s neurodiverse. So when he’s standing on a stage and I can’t do anything about his differences, it hits me all over again.

I know what you’re all thinking – she needs to relax and just accept him. But let me tell you that it is easier said than done.  I feel like every time my kid goes into one of his neurological tantrums or acts “autistic” other parents are just inwardly thanking God that it’s not their kid. It makes me understand why so many parents of ASD children find it unbearable to be around nuerotypcial kids and their parents.

But I’m going to take your advice. I’m going to ease up a little and try harder to accept that he is who he is. And as a first step, I’m going to repost some videos of him as a tiny kid who LOVED to dance. He has always been a crazy dancing machine. And I accept and love that about him.

Affirmation and the Pumpkin Wall

One of the most obvious signs of Holden’s autism is his unique speech patterns. I’ve said it before, but SOUND is Holden’s first language. Not English. He’s had to work VERY hard at speaking in words.  As his speech was developing, it seemed like it was 80% jabber. And the 20% that was made up of real words was echolalic. The fascinating thing now, is to study the changes in his speech.

He is speaking in sentences now, using words clearly and deliberately. He’s even asking questions like “what is this” and “where is ____” We’re not hearing any when’s, how’s, or why’s yet, but  I’m ecstatic that he’s more full of wonderment. And he loves to hear us read. He went through a long period of not being interested in books.

One of the most amazing feats he’s made lately, though, is that he’s saying YES/YEAH. It’s absolutely earth shattering. I cannot stress enough what a big deal that is! Whenever you asked him a question that required a yes/no answer, he would repeat the verb or noun rather than answer yes.

EXAMPLE
Me: “Do you like candy?”
H: “Candy”

Me: “Do you like to go to the park”

H: “Go to the park”

He’s not 100% now, but he’s saying YEA rather than repeating the word. It’s amazing. I took him to speech therapy all summer long and we worked on YES every time but it never seemed to stick. I finally just stopped trying to correct him, and figured maybe his way made more sense. I mean what does “yea” mean anyway. He wants to go to the park, so he says the words that mean something to him. Maybe we should all speak like that.

But all of the sudden, within the last week, he’s started to answer “yea.” I don’t know who helped him do that – but I’m so happy about it.

The thing about autism is that they have to work so darn hard at being “normal.” Or really I should say “neurotypical.” Take his artwork below. Look at the wall of Jack O’ Lanterns from right to left: pumpkin, pumpkin, pumpkin … they’re all obviously pumpkins except for Holden’s (bottom left).

Holden's Class of Jack O Lanterns

And yet, this is a masterpiece for Holds. You should see his artwork from 8 months ago. He would only draw 3 straight lines. And be done. Every single time he would draw. Then he started drawing squiggly lines. Now he’s adding more detail. But I just stare at his artwork and think: he is amazing. He’s navigating through a mass of white matter where his neurons are having a hard time connecting up correctly. Well, at least, that’s the “Under-Connectivity Theory” anyway. Check out this video about the autistic brain.

The world to him must be such a strange place. And socially it’s just going to get more complicated. There are so many unspoken social rules that we all obey without even realizing it. And each has to be purposefully taught to kids on the spectrum. I’m amazed at my son. He’s made huge progress and is just pretty darn neat.

Therapeutic Listening Program

We’ve been doing a listening program with Holds that my OT recommended. It’s not The Listening Program- which everyone asks if it is – it is similar though. It isn’t a set program like that one, the program is formatted by OT  based on a 30 page questionnaire I filled out about him. It is supposed to help with

• Attention
• Organized behavior
• Self-regulation
• Postural control
• Coordination
• Fine-motor control
• Motor planning
• Oral motor skills and articulation
• Social skills and communication
• Visual motor skill development

Anyway, so the purpose of the therapeutic listening program is to help him distinguish between sounds – neurotypical people block out background noises easily, but people on the spectrum have a hard time navigating through all that and blocking out unimportant sounds.

So the program requires him to wear big earphones twice a day for 30 minutes 3 hours apart. And it plays electronically modified music that taps into his nervous system. There’s an blog about it by a woman with Aspergers that explains it all really well. So just so I can keep a record of it, here’s what he’s listened to so far and what we’ve found.

Rhythm and Rhyme: I noticed his transitions were easier during the 2 weeks we listened to this disc. He freaked out less when I told him we needed to move to something else. But I also noticed he started biting more. He danced a lot with it too – it was very fun and bouncy.

Peach: My OT warned me that this disc could make him kind of clingy. But it sure didn’t do that. It made him crazy. Hyper crazy. We only stayed a week on this.

Early Mozart: This disc was awesome. I noticed really fascinating things, like he started hiding his cars, rather than lining them up. He NEVER does anything but line up his cars by the doorway. But he started hiding them in random places and playing with them more like you should with cars. I also noticed that he started engaging in conversation more – especially with other kids. That is a big change. He doesn’t really know what to say after he says “Hi guys!” but that will come. Him taking an interest is a big deal. He also sort of toned down on these discs. He has been much more focused. We have this dinosaur book with stickers that he’s ignored for 6 months. But on this disc he actually took an interest on his own and finished the whole book. And he has been reading a lot more.

Mozart for Modulation: We just started this disc. I will continue on this post and keep updating it as we go.

All About Fitz

I’ve been told to write more about Oliver Fitzgerald. I do write about Holds a lot more, but I mostly use this blog to sort out thoughts and feelings about what we’re learning about him. That said, I love both my boys a ridiculous amount and I’m always happy to brag about either of them. So here’s what’s going on with Fitz:

Fitz is adorable. He’s the easiest, happiest, most adorable baby that has ever existed.

He has big beautiful eyes that he uses to flirt with everyone: men, women, children – he can win over everyone.

He army crawls (still) all over the house but insists on taking the road less traveled. He likes going under the table, between the chairs, through all tight spaces and then gets mad when he can’t fit

Other facts: He got 8 teeth by the time he was 5 months. He MUST be cramming his face with food in order to be happy at mealtimes. He squawks really loudly when he wants attention. He smiles all the time and loves to laugh with his brother. He sleeps 12 hours and takes two 2-hour naps.

I told you he was good.

Yeah I Know He’s Loud Stop Staring at My Kid

I think every parent has times when their kid is throwing a fit and everybody is staring. Right? I mean, I hope I’m not the only one. The thing is, it happens all the time with Holden. But usually we’re around family or friends and they’re decent about it.

This weekend I took Holds to get a hair cut at Cookie Cutters. I wanted his hair to be super cute for his first big day at school. Holden HATES getting his hair cut. HATES. Hates having his hair touched and can’t abide the sound of clippers.

Holden Getting a Hair Cut

So I thought long and hard about how to get him through this. I showed him this cute video on their website of a girl and boy getting their haircut.  Then I told him at Cookie Cutters he can sit in a special car and get his hair cut. And at the end he gets a sucker if he’s a good boy. It didn’t take long – 20 seconds later he was rearing to go.

The thing is, he actually did VERY well through the haircut. But then they brought out the shears and the sound just killed him. So he started screaming and she stopped (half his head has a decent trim ’round the ears and half doesn’t). Then I told him it was over and we could go home and he completely lost it. He started screaming and dropped to the floor. I had not idea what was wrong with him. And EVERYBODY STARED. Like rude staring. Like they couldn’t believe a kid could scream that high or act that badly. Like they were so glad that wasn’t their kid. Like they thought I was just a horrible mother. It was awful.

I tried to talk him through it but he wouldn’t calm down and I ended up grabbing him and running out the door (yes I paid). It was awful. Turns out he didn’t understand that you don’t get to sit in those fun cars just to watch TV after your hair cut. You have to leave right after. And I didn’t get to that part in the explanation.

It was super sad. He cried for a sucker the whole way home and I just felt defeated.

More than anything, what this teaches me is not to stare or judge. Everyone is such a perfect parent when it’s not their kid. They have all the answers. But really you have no idea what someone is going through or how they should parent their kid. I’m (slowly) becoming a less judgmental and patient person. I think.

The Sound of Music

Holden loves music. He loves to sing and dance and the two are almost always inseparable for him. His body just moves with the beat. We have these great videos of him crazy dancing from when he was just 1 1/2 years old here and here.

I am finding it really beautiful and fascinating how he hears and processes sound. He was an early talker but didn’t developed language like neurotypical children. Speaking of which, I really have to say that I like the newish term nuerodiverse when talking about kids on the spectrum. It’s accepting.

Anyway, Holden is a phonetic listener. He picks out sounds, not necessarily words, and memorizes them. So when he was learning to speak, he would jabber the sounds he heard, many of which weren’t words, and thought he was communicating. I’m not sure why I’m saying this in past-tense, because he still does this.

I wish I spoke his language better. But I don’t, so we’re teaching him ours. And he’s a quick learner and using a lot more words.

The best example of this is when we’re all singing in the car together. We’re a happy quartet – I pick out the melody, Wes the harmony, Fitz is our audience and throws in a few squeals. But Holden sings the instruments. Mostly percussion. But he likes the piano lines too.

You can hear that he mixes in words with the percussion whenever he feels like it – they’re just another sound.

Here he is with “Viva La Vida” which he calls the “pilla pilla” song – because that’s the sound it makes to him. In fact he has names (sounds really) for all the songs we regularly listen to. It’s fascinating to hear the sound of music through his ears.

Wes is excited to have him start taking some kind of music lessons. He’s thinking drums

My Favorite Breakfast Recipes

I’ve had a few people ask me to post the recipes I have been using lately – just the really good ones. And I totally get it. You don’t want to experiment when you’re dealing with ingredients you don’t usually have in the kitchen. So here are some of the breakfast recipes we really like lately. I will post later my favorite desserts!

BUTTERNUT SQUASH pancakes (GAPS)

• 1 Cup Butternut Squash
• 4 Eggs
• 1 TBSP Coconut Oil (higher than 74 degrees so it’s melty)
• 1 TSP Baking Powder
• 1 TSP Vanilla
• 1 TSP Cinnamon

Pour items into a blender and blend. I cook with coconut oil in the pan. They need to be cooked on low-medium. Holds likes them with honey. I prefer mine with homemade yogurt and fruit.

Squash Pankcakes GAPS

CHOCOLATE PROTEIN SHAKE

• 1/2 Cup Sunflower Seed Butter
• 3 TBSP Cocoa
• 1 Banana
• 1 TBSP Coconut Oil
• 1 Cup Raw Milk (or Almond Milk)
• 1 Cup Ice

This is deliciously chocolatey and perfect after a work-out. I made these with almonds rather than nut butter and made them into popsicles, but Holds didn’t like the “things” in it – he kept trying to pick all the little nut bits out and hand them to me. So I will try again with this because it’s perfect!

Chocolate Protein Shake

Zucchini bread

I have been experimenting with soaking grains lately. Soaking reduces phytic acid which blocks the absorption of minerals from whole grains. Read this for more information on it and some how to’s. I have been looking for a healthy zucchini bread recipe (since I have like 5 zucchini plants that I though were butternut squash when I planted them) that uses whole grain flour.

This one is awesome. This is the original recipe, but I made a couple modifications. Instead of 1 1/2 cups wheat flour and 1 1/2 cups bread flour, I used 3 cups of Wonder Flour. Wonder flour is just equal parts of Barley, Spelt and Brown Rice ground up. I soaked them first, then dried them in the oven, the ground them in my grinder. And it turned out fantastic! Great recipe.

Zucchini Bread

GREEN SMOOTHIES

Growing a salad bar in my garden has been the best decision I made this year because I have just LOVED having green smoothies every other day. I would WAY rather drink my greens than eat them, to be honest. Wes and I love them, and Fitz loves them, but it’s a trial to get Holden on board. He doesn’t really like any smoothies. He prefers thin juice. Maybe it’s a texture thing? Anyway, but these are wonderful.

• Handful of greens. We use combination of whatever we have that day: Swiss Chard, Bok Choy, Spinach, or Buttercrunch
• Pinch of Parsley and/or Basil
• 1 1/2 Cups of Juice. We used a combination of apple juice, carrot juice, orange juice or apricot nectar.
• 1 Banana
• 1 Cup (at least) of ice

Blend in the  blender until green bits are all combined and banana is pureed.

Green Smoothie

Zucchini nut Bread (GAPS)

• 1 Cup Nut Butter Spread (we use sunflower seed butter)
• 3 Eggs
• 1/2 Tsp Baking Soda
• 1/2 – 3/4 Cup grated zucchini
• Pinch of Salt
• 1 TBSP Apple Cider Vinegar or Lemon Juice

Holds loves this zucchini bread. I can’t stand it, but I make it for him. And Fitz likes it too. Keep in mind it comes out green. I don’t know why because other kinds of zucchini bread don’t turn green, but this one does. When we were full-blown GAPS I got so frustrated with the bread. NONE of the GAPS bread I ever tried cut very well, and it always turned out soggy except for this one. It has been a lifesaver! And it’s super healthy. The original recipe is here, which is much sweeter and doesn’t have zucchini. But this is how I make mine.

Blend everything in a blender. Then divide between two small loaf pans or one big 9×4 one. Bake 350 for 40 minutes.

Everything Works

I’m reading a book that justifies my theory that “everything works when you work for it” with Autism. It’s called Overcoming Autism written by the cofounder of the Autism Research Center at the University of California at Santa Barbara.

She says:

“everything you do will make a difference. There’s a lot you can do for your child, more than you may be aware of right now . . . There are no miracles. It would be nice if a nonverbal kid suddenly started talking in sentences, if a self-injurious kid suddenly decided he preferred playing the piano to hitting himself in the head, and if a withdrawn boy suddenly realized that it’s fun to play with other kids. Of course, none of that’s going to happen.

“The good news, though, is that if you remove “suddenly” from the previous paragraph, it’s a completely different story, because we have seen all these things happen. They just didn’t happen suddenly or out of the blue – they were the result of hard work.”

Now that we’ve been combining a variety of approaches to Holden, it seems like he’s making a lot of progress. Everyone from his teachers to his therapists are really encouraged by the amount of progression he’s exhibiting. His task persistence is still low, but it’s getting better. His language and sentence structure is getting more complex, he is jabbering less. His temper tantrums are shorter and I’m getting better and figuring out why they’re happening and helping him avoid them. And he’s interacting socially far more than I’ve ever seen.

So here’s what we’re trying right now (in addition to Speech Therapy, Occupational Therapy, GF/GAPS diet, and my in-home ABA sessions.

Drum Therapy

We listen to Shamanic drumming music every morning and dinner time. Those two times are the typically the hardest times of the day for Holds. Our OT recommended we get drumming music because it’s beat is similar to the beat of a heart. And it helps kids with Autism regulate their nervous system. It helps calm them down. We listen to it in the morning as we show him his schedule, make breakfast and get dressed. And then either at dinner time or before bedtime, he likes to hear it again. Drum therapy just basically reduced stress and tension – which is good for all of us.

Picture Schedules

I bought a laminating machine a couple weeks ago and have been a laminating queen. I searched Mr. Google for all the activities and places and things we do throughout the day to help Holden know what his day looks like. He used to have meltdowns every day when I’d try to explain where we were going. People with autism have a hard time with concepts they can’t see. This has cut down on tantrums SIGNIFICANTLY. He does so much better when he can see what’s coming.

He’s such a literal kid that the first time I used our lunch picture, he saw what his actual lunch was and said “no, want this lunch” – it took a few times before he started accepting these were symbolic and the reality doesn’t have to be exact.

Essential Oils

I never thought I would use essential oils, but I sort of love them right now. I only have a few. We use Cedarwood and Lavender mostly. Lavender is calming and soothing to the nervous system, but also an antisceptic, anti-inflammatory, and bunch of other things, which is why they call it the Mother of all Oils. We put lavender on Holden’s pillowcase and rub it on his feet at night or any time I can calm him.

I used Cedarwood on the back of his head on the top of his spine. It’s supposed to help open up his limbic system and help his concentration and focus.

Cell Phone Timer

Several therapists recommend a timer for behavior problems. 90% of Holden’s tantrums are around transitions. He has a hard time, even with a picture schedule, transitioning from one activity/place to another. I used to count, give him warnings, say he has 5 minutes left, etc. but this method has been the most effective. I tell him how many minutes he can play for, then show him the timer and let him push the start button. So far, it’s the best thing ever. I just need to remember to use it!

Holden and his Giant Memory

Like many autistic kids, Holden has a knack of reciting lines from movies and songs. I got a book at the library our SLP recommended called “Polar Bear Polar Bear, What do you Hear?” and it had an audio CD with it. After the first time he listened to it, Holden started reciting it back to me.

He loves reciting it to anybody who will listen. And he even does the part of the book where the narrator says: “want to read along? When you hear this sound (ding) please turn the page.” And then starts all the way over. But he’s very tired here so he just does it once. But still, it’s cute.

He has started to generalize this with other animals and will ask them what they hear (Eg “Dinosaur, dinosaur, what do you here?”) and then make up sounds for them, which is very encouraging. In fact, his imagination has been improving a lot. In the pool the other day he said he was a crocodile. Every time he does pretend play it’s like a little ray of hope and sunshine.

Our Autism Diet: GAPS and Gluten Free

You might think I eat, breathe and drink autism, based on my posts. I asked Wes if he thinks people will think we’re obsessed. He says this blog is a great way to document what’s going on and that it is really beneficial for us. Even if nobody else reads it.

I keep getting asked how our GAPS diet is going. Well the truth is, I jumped off the full GAPS wagon weeks ago. And I’ve been trying to find myself ever since. I left because I lost too much weight on the diet and lost my milk. Fitz was crying every time I nursed and I didn’t realize why until I pumped and created next to nothing! So my dear friend told me to go get a shake. Which I did.

So here’s what we’re doing. We are on a mostly Modified GAPS/Gluten Free/Whole Foods diet. I hate the word diet – it drives me to overdose on Snickers and cookies. There needs to be another word.

The GAPS diet has been amazing for what it is taught us. I like it so much better than the “Autism Diet” which is Gluten Free/Casein Free. Commercially-made gluten free foods are jam packed with starches and weird ingredients like xantham gum and disaccharides. Even homemade ingredients have a lot of sugar and starches. How can that be better than wheat and spelt? And I get that some people really do have allergies to gluten (Celiac disease) but Holden (unlike most autistic people, apparently) has never had any digestive issues. So it’s hard to know if he really needs the GAPS diet or even the GFCF diet. Whereas the GAPS diet is amazingly healthful: no sugar, just meat, veggies, fruits, honey, and homemade dairy products.

But sometimes I just need some darn grains. And dessert!

So anyway, here’s where we’re at: we eat mostly GAPS foods – eggs, meat, vegetables, nuts and nut butter, fruit, honey, and yogurt (I can’t figure out lacto-fermented vegetables). Occasionally we eat gluten-free foods/desserts like chicken nuggets, chocolate flourless cake, and pasta. And super duper rarely we might eat sourdough wheat bread, that I have yet to make but keep thinking about.

Here are foods that Holden eats eagerly:
Banana pancakes
Butternut pancakes
Nut butter bread
Sunbutter
Honey
Chicken
Hamburgers (bunless)
Scrambled eggs
Carrots
Juice
Grapes
Raisins
Raspberries
Strawberries
Sausage
Bacon
Zucchini bread (GAPS)
Apples
Frozen Yogurt

Foods he eats with some persuasion
Cooked carrots
Zucchini
Squash
Bananas
Green Smoothies
Lettuce
Pot Roast
Pork
Salmon

Foods he still will not touch
Potatoes
Broth
Cabbage
Applesauce
Yogurt