Pictures!

Like his momma, Matthew doesn't love change and new things. We got his pictures taken last week, and he was pretty nervous. It took alot of coaxing and TIME for him to settle down and let the photographer take his picture.

But he eventually came around and she got some very cute ones like this!!!

Isn't he handsome?!

Those darn numbers and letters

Sidewalk chalk fun!

A common fascination with Spectrum kiddos is letters and numbers. Matthew definately has this obessession. I call it an obsession seriously, because that is all he wants to do and play with to the point of not always being able to stop it on his own. Its a very touchy thing and is the cause for some meltdowns - and only some of those meltdowns are from Matthew!

We have electric tape over all the digital clocks in our downstairs except for the microwave. When Matthew hears it start up he comes running so he can watch the numbers. He stands in front of it while "stimming" and shouting out occasional numbers and when it finally gets to zero he either cries or shouts BLASTOFF! When riding in the car, either we listen to the CD and he keeps track of the song numbers (even with the numbers covered up) on his fingers or he watches the clock and shouts "There it is!" whenever the minutes change.

Today we left a grocery store and Matthew saw a lottery machine with the numbers. He watched the digital numbers scan and suddenly shouted "80!!" VERY loudly. Some of the employees chuckled and I heard one of them say "What was that about?" I just wanted to sigh. I think I actually did sigh.

I could go on and on.

He is beginning to read and continually amazes me with all that he knows. Letters aren't so bad for me to deal with. Letters make words, words make sentences, etc. Its a gradual, obvious progression of what I can teach him. Numbers are a little more difficult. He loves to count and I've heard him count to 1000. So, we're trying to work on patterns, sorting, etc. Anything to add something "new".

So far, this is the most challenging things for me to deal with. Numbers and letters are EVERYWHERE! I'd like to give my 2 cents to the wise guy who came up with the idea of putting them on every piece of playground equipment there is.

But, we just keep plugging away at it, trying to help him focus on the music not the numbers, the story, not just the letters and words. And, we'll keep trying to get him interested in cars, trucks or trains like most 3 year old boys are. My dream is to see him play with cars with a friend. Not alongside a friend, but WITH a friend.

As a wise person once told me, he's only 3. The things we are doing now will help him cope later. That is my sincere prayer!

Vacation!!

We have a fantastic summer vacation! This was the first one we've gone on since Matthew has come along. To be honest, I don't think it would have gone as smoothly if we would have done it any sooner. Now that he is comprehending more and more and we can explain what is going on, its much easier.

I made Matthew a book, that we read alot in the weeks leading up to our trip. In it, I put all of the details I could think of - like a long car ride, stopping at a hotel, packing our bags and loading the car, etc.

As soon as we made the decision to go, I was so apprehensive. Did I do the right thing? Matthew is such a creature of habit, and so fearful of new things. I was sure that he was going to be so uncomfortable and stressed out that I didn't think we made the right decision and should wait until he's older! I second guessed myself until I asked advice from his Occupational Therapist. She got very excited, gave some fantastic advice, and then said "That's going to be so good for Matthew!" Well, that comment completely changed my perspective.

Matthew did GREAT on vacation! We took along his favorite "comfort" toys and we could gradually watch him become used to his surroundings. When we got to the beach, he got right to playing in the sand and went right down to the water, without any coaxing. The entire time we were there, he never once asked to "Go home". What a good boy!

The view outside our 7th floor condo. This took Matthew several days to get used to. We always had to carry him, and he would have a death grip on us. It was open, with a railing. By the end of the week though, he was fine.

Playing on the beach! Not one tiny bit of sunburn the entire trip! As my mom put it, "He was all covered up!"

Matthew called this his swimming pool. This kept him very entertained! We'd fill it up with ocean water and he would play and play.

Contemplating...

Our happy family!

Happy Birthday Matthew!

We just celebrated his 3rd birthday. I love it that he has a summer birthday and we can throw a backyard bar-b-que!

Gary and I got him a Hot Wheels seaport village. I'm hoping this will spur some imaginative play. So far, he just likes to watch the cars fly down the hills and crash. Hey, I'll take it! He is very literal in his thinking, so when I ask him where the cars are going, he just stares at me. So, I ask him if they are going to the store? the beach? to church? to Grandma's? His answer is always "No". Its kind of funny, really. He used to completely ignore me when I asked him stuff like that, so I'm happy that he's even responding!

Birthday cake! He couldn't keep his fingers off of it. You can't tell, but there are spots all over the cake that he squished with his fingers.

Although his face here doesn't show it, he LOVES cake!

His 3rd birthday marked the first night in his Big Boy Bed! He did excellent! He went to sleep all by himself and slept almost until 8:00 the next morning. What a good boy! So far, night #2 is going just as well. This is the bed his Uncle Jim slept in when he was a boy.

Matthew's flared eyebrows

One of the first things I noticed after Matthew was born were his "crazy" eyebrows. I didn't know it at the time, but it can be a potential indicator of chromosomal issues. Yikes! I'm glad I didn't know!

Incidentally, Matthew's chromosomes have been tested, and they are normal. So, his flared eyebrows, are just flared eyebrows and nothing more.

I tried to find a good picture to show you his eyebrows, one is more flared than the other. The center portion of his left eyebrow grows straight up.

Personally, I think it just adds character!

Speech

One more thing!

Last year at this time, Matthew had maybe 5 words in his vocabulary. If I remember right, he said: Daddy, ball, ruff, roar, etc...

This past week he was evaluated by a speech therapist who tested him at or above his age level for speech, comprehension, etc. So, he does not qualify for speech intervention through the school system. There are definately issues with his speech that we need to address though, so we're going to work on getting some funding for that.

Please indulge me for just a bit. There were 2 therapists who evaluated Matthew, one was the Speech therapist and the other was an OT. (For the most part, Matthew could do the fine motor skills fine, but struggles with sensory, which we knew.) Matthew greeted them at the door, found out their names and called them by name throughout the time they were here. The speech therapist told me that in her 29 years, said she has never seen a child like him. Most kiddos on the spectrum won't acknowledge her entrance, and engage in the testing like he did. She found him to be delightful (her words).

Yes, that's my little one and I know he's amazing.

Fun away from home

In 1 week from today, we're leaving for a beach vacation. This is the first time we're going on one since Matthew has been born. So, we've been talking about the beach alot, and I made a book for Matthew, so he'll know a little more about what to expect.




Matthew is a creature of habit and routine. So, its best to let him know what is coming next, especially if it is new and different. I've learned to explain, explain, explain and repeat, repeat, repeat...




We had a gift certificate for a nights stay at a local hotel, so we used it to show Matthew what it will be like to sleep and spend time away from home. He did great! We swam in the pool (Without any meltdowns or protests, even!), and had a fun evening in our room on the fourth floor. The only thing he didn't like - but has talked repeatedly of since that night - is the elevator. He's pretty afraid of them, and its the movement that he doesn't like. So, we sing and "count numbers" while the elevator moves. He protests before we get on and clings to his daddy but he does ride them. When he is tired, the protests are worse. I've been explaining to him that we will ride an elevator lots on vacation. We'll see how that goes...


The next morning came VERY early at 5:45 when I heard his little voice say "Do you want to play with your letter puzzle?" (Sometimes his speech is echolalic - meaning he parrots back what we say or would say, to him.)




Here are some fun shots in the pool:

Snacking on some popcorn before bed.

Sensory play

Last summer, Matthew rarely played on playgrounds or any play equipment. Occasionally, if he was exceptionally well-rested and he was 100% comfortable in his surroundings, he would do play well, but other than that, he mostly was afraid of it all.









So far, this summer is proving to be much different. This is in our backyard, but we've gone to several playgrounds and with 1 exception, he's played great!















We're working on alot of sensory play, and he's doing well! What is sensory play, you ask? That is a good question, and I'm not really sure how to answer, so I'll give you examples:

• Slides


• Swings


• Merry-go-rounds


• Finger paints


• Shaving cream


• Sandboxes


• Play-Doh


• The list could go on and on.

Are you getting the picture? Its experiencing different sensations, I suppose. It involves much more, but those are the basics. We swing Matthew back and forth in a blanket sometimes and he and his daddy love to wrestle. I've drug him around in a washbasket, which he loves. When he's riding in his wagon, he often says "Go fast!!" This is very important for him, to get him used to all kinds of stuff that he'll experience all his life. We won't be taking him on a roller coaster anytime soon - really, its ok if he doesn't like them. After all, Mommy doesn't!! (Hmmm, do you think I could have some sensory issues?)

Again, this stuff was very difficult last summer. He would never have climbed willingly into a washbasket then, and when it came to sand, he didn't even want to touch it. Now, he likes to lay in his sandbox and as long as we can incorporate letters and numbers, he'll stick his fingers right into the shaving cream.

One of the things that occasionally gives us problems is running water. So, its a little touchy to wash his hands sometimes and he's afraid to stick his hands under the faucet when his tub is filling up. The other night, one of his bath toys was directly under the water. I watched him try to work up the courage to reach for it, and he ended up asking for help. We'll just keep working on it!

And, as a bonus, are the flowers in my backyard pretty? My clematis did well this spring, and there are tons of peonies and a huge hollyhock!

A jam-packed day!

Yesterday, we hit the Columbus Zoo! We had lots of fun! Last summer it would have been a little different. There were alot of indoor exhibits with loud noises, drastic temperature changes, stinky smells and were very dark. We hit them all, and Matthew only got scared in one and asked to go home. He didn't love them all, but tolerated them. It was great! And...thanks to Dramamine, we had a most enjoyable drive that didn't include any clean up or changes of clothing. Whew. That in itself was a huge accomplishment!

Outside the bear exhibit. Matthew had ENOUGH of riding in the stroller! He really did well though, it was a long day! There weren't many people around, so we just let him run for awhile after this.

While we were eating lunch, we listened to this lion roar. One of the females answered back from the other side of the enclosure and he lifted his head and listened intently. It was very cool! I wonder what they were saying to each other? lol!

At the petting zoo. Matthew would look at this goat and say, "It's not a cow." Apparently he thought Gary and I may be confused since it was black and white! ;)

This pair of goats were fast asleep. The tan one made a very weird snoring noise and his bottom teeth were always showing. They were so content until Matthew sat on the tan goat - I couldn't get to him fast enough to stop him! The goat just got up and left. Matthew's friends, Jack and Annie have a wonderful Golden Retriever named Fletcher who doesn't mind when Matthew lays all over him, so I think thats what Matthew was thinking of! He's pretty fearless when it comes to animals - I can't wait to go to Rolling Ridge this summer where we can actually feed them!

The bigger reason we went to Columbus yesterday was to follow up with Matthew's Neurologist, Dr Emily in the afternoon. At Matthew's initial diagostic appointment 9 months ago, she was quite concerned with his speech. The first question she asked was how many words are now in his vocabulary and after a pause, I told her that he's doing 4 and 5 word sentences. She was very pleased - and didn't seem concerned with his echolalic speech. (parroting what is said to him). She asked basic things like does he know his numbers? colors? shapes? letters? We were able to answer "Yes" to all of that stuff and Matthew said the alphabet backwards for her and she took our word for it that he can count to 100. ;) She told us to keep doing what we're doing and Matthew gave her a hug and blew her kisses when we left.

She had a few minor concerns about things that we are working on right now with him, but we don't need to contact her or see her again unless he regresses or we have other major concerns. We have a few details to work out about it all yet, but I must say, as much as I've come to appreciate Dr Emily, I hope I never see her again! :) Matthew still has 1 Doctor in Columbus who keeps much closer tabs on his development - maybe we can get rid of him too! I think I might be getting ahead of myself on that one...

Dr Emily sees follow ups in the afternoon and does diagnostic appointments in the morning. My heart hurt for the parents who had their little ones there yesterday morning and heard heart-breaking news like we did 9 months ago. On our drive home I commented on the vastly different tone of this appointment and how GREAT we felt when we left this time. This is not the journey I would have picked, but it is, in fact, the one we are on, and God has been and continues to be faithful!

What a good day!

Imaginative play

Matthew is a little "stuck" in his play, and we are working on showing him how to use his imagination. I know its in there somewhere! We are working on talking about who lives in his house with him and that we are a family. Along with this, we talk about animals living in a barn and people living in houses. These are basic social situations and settings that most kids catch on to naturally. Matthew's brain though, is just wired a little differently than most, and he'll have to learn these another way.

This week we visited my sister who has a dairy farm and saw the cows in their barn. I wish I would have taken pictures! Matthew was fine about being in the barn, but didn't want to touch the cows. After we came home, we got out his play farm set and played with the animals, and pretended to feed the animals some hay, etc. He did pretty good, and was engaged for a short time, but then started to line up the hay bales. I snapped a picture of it, because it was clear what mommy did and what Matthew did. I hope no one gets vertigo from our crazy 1970's kitchen carpet!

When we ask him if people live in a barn, he now says "No way!" Each night, before bedtime we read a book that talks about baby Jesus laying in a manger. The picture in the book has animals gathered around the manger. I talk about Jesus being born in a barn where the animals live, because there was no room in a house for him. He never comments on this, and I don't know if he "gets it". He hears that Jesus loves him and came to die for him, but I'm not sure what is soaking in his little mind.

Puzzles, puzzles and more puzzles...

Matthew LOVES puzzles. Its something he can figure out easily and makes sense to him. And the "answer" is the same every time! His Aunt Norma (or Nooma, as he says) got him a construction floor puzzle that he loves. We do it several times a day, and he knows all of the equipment on it. I like it because its a little more difficult for him and he still needs our help.

I may need to invest in some Bob the Builder toys. Since he got this puzzle, we love to see big equipment when we're on the road. Its very exciting!

I snapped these just this morning. I love Saturday mornings when we're all at home!

Getting a little distracted by the tv...

Reflux

Matthew has always struggled with acid reflux. Last fall he had a scope at Akron Children's Hospital to see potential causes and what damage his reflux has caused so far. He had a little inflammation in his esophagus, probably due to the fact that he couldn't be on his meds prior to this surgery. He is still on meds, and hopefully we'll be able to wean him off of them soon.

He was a trooper that day and did amazingly well! By the time we got home, he was running around and playing like normal, but his mommy and daddy were collapsed on the couch! I did ok that day, and held it together at the hospital, but was cranky the next day. It is quite a feeling to have a nurse take your baby from your arms and take him to surgery.


Here are a few pictures of Matthew in recovery. I thought he would be very interested in these someday...

Conversations

When Gary and I found out we were pregnant with Matthew, I remember picturing different scenes in my mind about being a mommy. I distinctly remember picturing riding in the car, conversing with my little one! I'm living out that dream today. While it may not be the typical type of conversation for a 2.5 year old - I'm lovin' every bit of it!

Matthew will pick up random words, especially from the news on the radio. His articulation is advanced, and he'll repeat some pretty big words and stick them into conversation. He has no idea what they mean, it cracks me up!

Here is a conversation we had on the way home from small group today. While the mommy's meet for group, some friends watch our kids for us.

Matthew: I missed you!

Me: I missed you too!

Matthew: Play with Kari.

Me: Who else did you play with?

Matthew: Faif (Faith), Cora, Jat (Jack)

Matthew: forecasting. forecasting! FORECASTING!!!!! (Until I acknowledge this)

Me: Yes, forecasting.

Matthew: What's that say? (As he sees road sign.)

Me: Road work ahead.

Matthew: Road work ahead. Protest

Me: Yes, protest.

Matthew: I missed you.

Me: I missed you too.

Matthew: Go home. Go night-nights.

Me: Yep, its almost time for night-nights.

Its so much fun! I'm loving it!

Let it be known...

That on this day, Feb 6 at 5:15 pm, Matthew looked at me and spontaneously said "I love you, Mommy." Then, 10 minutes later he asked for a kiss.

Life.Is.Good.

Naps & Night Sleep

Its naptime, and as I type, Matthew is upstairs in his room singing and saying his ABC's. I think its safe to say there will be no nap today.

After he was born, the first night we had him home from the hospital, he slept in our bedroom. That night, I noticed that he would stir at the slightest noise we made. Something I thought was odd for a newborn. On the good advice from a few of my sisters, we moved him into his own room the next night. They said that both he and Gary and I will sleep better. As he got a little older, I would have to cover his eyes with a burp cloth or my hand to get him to sleep. My mom told me once that he's going to figure out that he can pull that cloth off. I told her I'd deal with that when I had to. LOL!

The best way that I can explain it is that Matthew has always had trouble "shutting off his brain". He remains an extremely light sleeper and doesn't sleep in the car, and rarely anywhere else besides his own bed in his own room. Developmental milestones always wreak havoc on his sleep. When he started talking, I thought he was never going to take a nap again! We were both exhausted! In his room, I have heavy black craft paper duct taped over the windows and a radio is on, turned to static for white noise. That is my attempt to block out any stimulation. He's never been a great napper. There's been periods of time that he's done really well, but over all you never know what a new day will bring.

His night sleep is and has always been, MUCH better. I can't remember the last time I've had to go in his room in the night because he was crying. I've read that day and night sleep occur in 2 different parts of our brain. This makes perfect sense to me!

Trust me, I've sung woes about this and looked jealously at my friends whose kiddos who can fall asleep on anyone's shoulder in the middle of a crowded, noisy room. Since his diagnosis though, I count myself fortunate. I've had to complete many many pages of questions about Matthew's sleep. It hasn't been easy, but I don't think his sleep is generally any worse than a "typical" child who isn't a good sleeper. Going to appointments for Matthew at children's hospitals, I've walked past many doors with signs posted that read "Quiet, please. Sleep studies are going on." I whisper a prayer of thanks when I pass those.

Looking back, the best thing we did was to establish a consistent routine. Matthew, like most if not all children with Autism, is most comfortable when he knows what to expect next. He gets this honestly from his mama too. :) When its time for night-night at 8:00, he goes without protest or complaint. I realize that he's only 2.5 and this could change, but am thoroughly enjoying it now!

A no-nap day like today makes for lloonngg afternoons, but also calls for early bedtimes! So, there is a silver lining tonight!




I love the picture below. Its one of the VERY few we have of him sleeping! I remember this day very well. He was at a sitters in the morning and couldn't nap. So I brought him home, laid with him on our bed and worked and worked for several hours to get him to sleep and STAY sleeping. He had a good long afternoon nap, but still had an overtired meltdown before bed that night.

Things are a little easier these days, thank goodness!

Top Chefs!!

I think pancakes is one of Matthew's favorite foods. I once had to cut him off, because 6 pancakes is enough for a 2 year old and he kept wanting more! Granted, they weren't huge, but still! He eats a lot. I'm not sure where he puts it all, and we're always being told by his Dr's that he's small for his age. Maybe too small.

He made pancakes with Daddy last Saturday morning for breakfast and thought he was big stuff when he got to help stir.

I know this is blurry - I can't seem to take good pictures with our camera! ARG!

Its fun to play in crates!!

I was cleaning the dog's crate and corner, and Matthew thought it was GREAT fun to play inside of the crate. No, we did NOT put him in it and lock the door, nor is this where he sleeps! LOL!!

The "Ugly W"

It seems that the most comfortable way for Matthew to sit is with his legs beside him, bent at the knees. This is referred to as the "Ugly W" by many of his therapists and we are constantly telling Matthew to "fix your legs." He then flips them out in front of him. It is very hard on hips - but I guess when you only weigh 28 or so pounds, its not uncomfortable at all. We're trying to break him of the habit now - but its not easy. Hopefully when he gets bigger and heavier, it won't feel that good and he'll stop. We hope.

I've asked many therapists whether it is the CAUSE of loose hip joints or the RESULT of loose hip joints and have never got a solid answer and the answers vary.

Here is Matthew sitting in the W.

I stuck his legs in the "pretzel" position. Its clearly not as comfy for him. He blinked, so that is why he looks a little drugged...

Being Matthew's Mommy

This is a post that I've been both looking forward to and procrastinating about. I wanted to get my thoughts down and organized, so please bear with me.

Some days are definitely more difficult than others. Usually it doesn't have to do with Matthew or his behavior as much as my frame of mind. Sometimes his differences are glaringly obvious to me. Many days I have cried on the way home from a playdate after watching him stand on the sidelines either unsure of how to participate or too afraid to join in. Some days, no matter how hard I try, I can't get him to stop stimming or play with his toys in new or different ways. I worry about school. Will he have friends? Will other children make fun of him? Will he be able to read a story and comprehend what he is reading? Will he panic at every school bell and fire drill because of the noise? I worry about his future. Will he ever be able to empathize with and relate to others? Get married? Have a family and give us grandbabies? Will he be able to grasp and comprehend what his Savior did for him by dying on the cross?

Then, other days I can rejoice at how far he has come. This week I watched him in a crowd of children; It was very noisy, he was getting jostled and shoved and not complaining or minding a bit and I LOVED IT. I didn't mind at all that he frequently plugged his ears. On those days I can listen to him sing songs and smile instead of freaking out that he is repeating things verbatim. (A common thing with Autism.) On those days I can easily choose to celebrate what he has accomplished instead of feeling defeated when I think of how far we have to go. And that is huge. He has come very far and I have every expectation and hope that he will continue to progress and improve.

I don't know why God chose us to be his parents. There are many out there who are wiser, better, more educated in Autism who He could have chosen. But, He did in fact chose us - something I don't take lightly. I continually pray for wisdom and energy to be Matthew's mommy. There is a book that we read to Matthew every night entitled "The Three Trees" and the last few lines of it reads: "And so we see, God's ways are not always our ways, but His ways are always best." I read this to Matthew and kiss him good night and tell him that I love him, and that Jesus loves him even more and that Jesus has a plan for his life and is going to use him someday.

What it all boils down to is that I love being Matthew's mommy and I wouldn't trade it for the world - and I'm humbled to be used by God in this way.

Now, I'm going to go play!