Reece Reading

Over the past 3 weeks while I read bedtime stories, Reece fiddles with his “quiet toy” in his lap. He examines those toys and occasionally laughs or tries to get Kai to trade toys with him. Sometimes I would wonder if he even realized that I was there reading. Tonight though, was something special. Reece began repeating the book after me. He had to stop of course, to say “Light on”; a frequent phrase we hear consistently throughout the day… but, he sat there and read with me tonight ❤

He's continuing to make leaps and bounds with his speech since July. Reece is now beginning to explore 3 word sentences and I can barely contain my excitement!

Bedtime Picture Chart

I added a picture chart above Reece’s Quiet Spot to help him see when steps are completed at bedtime. My hope is he’ll understand that once the picture is removed and put in the envelope, he cannot repeat that step. (it’s not the most visually pleasing thing I have ever made, but it’s simple, covered in contact paper and Velcro, and it’s done!)

Image

We started Sunday night and he was excited! But Monday night he could not stop focusing on his music box picture. He cried and Daddy held him while I helped him complete the steps. He giggled when it was time to get out the music box and we turned it on. When all pictures were removed and lights were out, he cried and cried for water. This was one of the steps he would try to repeat over and over before we started Melatonin, so I told him “water is all done” and I put him in his crib and tried to help him calm down. 10 minutes later, with Daddy’s suggestion, I gave him water and another 7 minutes after I left the bedroom, Reece stopped crying and fell asleep. My patience is short this time a day and my heart hurts with guilt.

I will add “water” to our picture chart as our step after music is turned on. I really hope this helps. We’re going to stop Melatonin tonight (10 nights in a row), and only give it on Big Brother’s school nights when he’s having difficulties falling asleep.

I am looking at 2 different websites for weighted blankets as our last step to help Reece fall asleep. They are between $80 and $120 for his weight and crib size. I spoke with his Developmental Therapist and the Autism Specialist from TEACCH to narrow down my search. The price is overwhelming, but I am leaning towards the more expensive option through weightedblanket.net because they have a trade in option when your child needs to upgrade as they grow.

The money will come..

Melatonin

I love Melatonin!

It’s just a shame it’s a temporary solution.

We ventured to the Pediatricians Friday morning for the green light to use this supplement to help Reece fall asleep at night. By night 3, there was not a single cry out. Thank God! What a difference a good night of sleep can do. For all of us.

I also fine-tweaked the bedtime routine after consulting with Mr. R from TEACCH and doing some research online.

We start with a warm bath

Image

Lotion, PJs, Water, and Brush teeth is next.

And then they go to the Quiet Spot!

Image

I used the extra crib mattress we had stored under the bunk beds. Kai gets settled in the bottom bunk where he sleeps and Reece must stay on the Quiet Spot. No more leaving the room once they are there.  We unscrewed 3 of the bulbs on the ceiling fan so the light is dim. To help “bribe” them to stay on their spots and relax, they each get to pick ONE Quiet Toy out of the basket to hold:

Image

My favorite are the Calming Jars! I found a How-To on Pinterest. The rest of the items I got at a Dollar store. I’ll  add more choices and rotate items over time.

SAM_4765edit

While they hold their Quiet Toy, I read a couple of books. Before, when I read a bedtime book, Reece would run circles around the room, climb the furniture, and jump on and off his brother’s bed. It was absolutely a two person job. Having a physical spot for Reece to sit on and an object he wants to hold, helps him see and know his boundaries. I’ll talk more about this in my next post.

These small changes have made such a BIG IMPACT to the ending of our days.  I’m now looking forward to this time of day, instead of dreading it.

Bedtime Routine

I could totally get on board with Reece’s OCD bedtime routine…if he wouldn’t change it up on me so frequently! Tonight, I just followed him around b/c he was so upset, he could not vocalize what needed to happen in what order:

Lotion needed to be put on his finger from the bottle. Not from us. Then he just wanted to hold it on his finger. For a long time.

He walked over and petted each dog (Remi and then Trinity).

Then he needed more lotion. Again, put on his finger from the bottle. It was not acceptable if we put the lotion on our finger first and then try to give it to him.

He walked over to the dogs in the living room again and gave them each a pet in the same order. Remi first, then Trinity.

He walked to his room next and checked his music box before he could come back to the kitchen for a drink of water.

I carried him to bed, put him in his crib. And now, this I expected; he said “watu” and we had to go back to the kitchen for one more sip.

Sometimes at this point, he requests more lotion. Lately, we repeat walking to his crib, he lays down and then wants lotion and water. We’ll do this more than 5x before he’s satisfied.

It becomes mentally exhausting, guessing what kind of routine Reece will need to happen before he can settle down for the night. He’s tired at this point and screams/cries and maybe doesn’t know what he wants so I have to guess what he needs and he cries ‘no’ to anything and works himself up into a panic.

Older brother sleeps in the room with him and is many times understanding. But sometimes he’s not, and at no fault to him, just wants to sleep without the chaos. Older Brother gets angry or wants to join us walking circles which makes Reece even more wound up and farther away from getting any sleep when people are present. I often offer for them to sleep in separate rooms, but Older Brother does not want this.

With Reece starting a new in-home therapy with TEACCH, UNC’s Autism Program, I’m hoping Mr. R will be able to help me with this soon.

Gluten Free

It has been shown that there is a strong correlation with Autism and the gut. In many cases, a gluten free diet has lessened many behavioral issues associated with Autism.  As well as a dairy free diet. For more information: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diet/

Since limiting Reece’s gluten intake 7-9 days ago, Reece’s speech frequency during the day has doubled. After doing some research, I really don’t think this is a result from his diet. It’s too soon to tell and we would need to completely eliminate gluten.

Reece may just be having a major “on” moment.  When he’s in those periods he engages with us, sleeps 12 or more hours a night, has minimal meltdowns, and minor repetitive behaviors. He even sits for short books. But it’s always followed by a regression period. That’s when I truly believe he’s been diagnosed correctly. When he regresses; his meltdowns increase, repetitive behaviors keep him occupied from engaging with us, goes a full day without more than 5 words spoken, sleeps less, and is hyper active.

 

First Meeting

This morning we went to meet with Reece’s Service coordinator and a Representative with the public school system. This is the beginning of our transition period from the Infant Toddler Program into the school system. Today was the broad meeting to get information about the school system, what services they offer, and the process from now until Reece services end with CDSA and begin with the counties school system. We’ll have around 3 more meetings between the end of August through December, when Reece turns 3, to determine what services he qualifies for and to set up his IEP (Individualized Education Program) .

In the meantime, I’ve asked Reece’s Service Coordinator to find out if we can increase his Speech sessions to twice a week. And she’s also calling around to find a Developmental Therapy group that runs during the summer.

I spoke with Reece’s SLP today during his therapy session and requested copies of any written tests she’s filled out for Reece in the last year so I can send them to TEACCH  along with his Evaluations, and hearing test. I should receive a call in the next 2 months for an initial evaluation to determine service eligibility.

This waiting period is difficult.

Stimming Behaviors

Often, when older brother is at school or busy playing by himself and I am doing laundry or making dinner, I hear Reece saying a sound, word, or short two word phrase over and over. He is usually hopping, skipping with his head tilted to the side and spinning himself in circles. I fear that one day he may not notice me watching him..