Survived Another Round of Mommy the Barber

Finally, mission accomplished. It took a few times to get this all done, but we got there. Was this easy or fun, no way! They all fought it all the way through. There was crying, screaming, kicking, hitting, scratching, one attempted bite, we're all still alive. This really is hard on them from a sensory standpoint and there is no way I can get them to understand this don't hurt. My hope is in time they get used to this and it gets easier. Probably should do it more often. With that, here's my handsome little men :-)


Poor Eric, while I was doing this he kept saying, "please stop!" I wanted to cry. On the other hand, it's amazing how much he can vocalize his feelings now. I'm very impressed with that. I couldn't leave him with a half shaved head so I had to carry on until finished, poor kid :-(.


I fixed Andy's hair. You can still see where the guard fell off on the left side of his head last time I did it, but it isn't nearly as noticeable. The back is now even too. As it turns out the #1 is a good look for both Andy and Eric.


Just as you think when you walk into my house "We're in the Army Now!" lol here's little Jon. His haircut was done a week before. He was after Andy and I got scared after his didn't turn out as I expected. So I left the longer comb on the clippers. His turned out awesome. As I think about it, the longer look fits him better. Jon's hair also gets wavy as it gets longer, which can make it hard to cut. They all look great, and I didn't have to pay $75 for it to happen :-D

So Close...

The therapists have been saying since last week how well he's been doing with drinking his CIB out of a straw cup for them. Yesterday he drank it all up for them so I decided to offer him only that down here. There is a lot more fuss, but eventually he was taking sips for me. The problem is these sips weren't amounting to enough to keep him hydrated and with proper nutrients. So, I had to give him his other cup today. The senior therapist suggested putting water in there if he isn't getting enough CIB since he's much more compliant with that. Should of thought of that, it's been a long couple of days with baby brother. Anyway, he has an appointment at the feeding clinic Wednesday morning. My plan was to discuss this with them. We will have this so soon, I feel it. We just need to know how to best get through this difficult transition process and keep him healthy.

Today I'm going to take another try at cutting Eric's hair. If it don't work today I'm going to have to wait until I can get someone here to help me with him or take him to the salon again. I'm also debating shaving off Andy since I messed up his. The guard came off while i was cutting his so there are parts of his head that were shaved all the way. He may have a hairless Christmas!

More on the Holidays...

Holiday Letter for Families with Autism

This is another good read for anyone that will be spending time this holiday season with someone with autism. It's written in the point of view of an autistic person. Many of our kids have a hard time with the change in schedules and routines. There is so much activity, lights, sounds and people. This can be hard for any young child. There are times our kids will want to be alone. Sometimes they will stim and people ask questions. If the child won't sit down and eat with everyone, or they don't seem to get Santa, or unwrapping gifts it could be taken the wrong way. With a little communication with the parents, and as much patience and understanding as possible the holidays can still be a wonderful experience for everyone.

Decorations
At this point, I only have a tree. It may stay at that too. I may get some stockings to hang high where they can't reach. The reason for this...


This is what my tree looks like at this time. I'm hoping to try to put this back together on Christmas eve night before I put out the presents so it looks nice for Christmas morning at least. It won't last long, I know that. Here's why!




As you can see, he's quite proud of himself for doing this. Eric thinks the ornaments are balls. During one of his tantrums he knocked the whole tree over. Nobody was hurt, but that wasn't fun.

Parties
Tonight my wonderful friend that I used to go to church with invited me to her house for a Christmas party and meal. It was a short notice invitation, and I was actually going to pack up all 3 boys this evening and go over there. Jon woke up from his nap sick, so we couldn't go. Maybe that was God's way of telling me I was nuts to even THINK about trying this. I honestly didn't expect to stay there long. I'm always prepared to pick up and leave very quickly if they just can't handle this type of thing. Maybe I would have been able to eat with the kids. Ronda knows me and my children very well, and would do whatever reasonable to accommodate to them. The people there most likely would know our family too. But when the behavior becomes not so desirable, it gets noticed. When we used to go to their dad's family gatherings it was never a great experience. I was always pinned down by a child who was having a hard time so I could never talk to anyone, eat, or enjoy anything. The relatives would get offended if my kids did not act like or play with the other kids, would not eat the food offered, and would not rip open their presents and jump up for joy or show appreciation. Of course there were always the "I don't do a good enough job disciplining them", "You hold them too much", "You don't talk to them enough or they would be talking", ect. Their dad never wanted to leave when the kids had more than enough and I was having a miserable time. This was so not worth the stress and the upset. I've found that having realistic expectations, preparing the children as best as possible, letting the host and guests know what is going on, and having an escape and being willing to leave at a moments notice is the best way of going about something like this. We will be going to my mom's house on Christmas Day. It's not going to be a lot of people and they don't go nuts with the decorations, so that will help. I have answers prepared for the questions I figure I'll get. We should be good to go. It is important to have family and friends in life, especially around the holidays. Everyone should be able to enjoy themselves in their own ways.



The message is quite clear here. This was at the end of the school Christmas event today. Sadly, this was 15 min before he could go :-(

Gifts
Last year the boys had no clue about unwrapping gifts. Seeing the all the presents under the Christmas tree didn't peak any interest in Eric or Andy. Jon did like the paper, but was still a bit confused but he was only a year old. It was hard to see this, surely not how I pictured Christmas morning. They loved the toys though! For the last couple of weeks I've been debating whether or not to wrap their gifts. I love wrapping presents and making things pretty. It's theraputic for me. On the other hand, I'm thinking it would be easier and more enjoyable for them to just have the toys under the tree ready for them to grab. Right now I'm thinking of doing some of both. As to how they would react to wrapped gifts, I got a preview at Andy's school Christmas party today.


It took forever to get him near this and anywhere near interested. He couldn't of cared less.


The SLP telling him "open", he didn't know that. All the other kids ripped these open.


At least he let me take a pic of this by him, but it took many presentations.


He loved what was inside though!

I'm now ready if they are not interested and don't get it. Yes, I will be sad, but we can still make this enjoyable. It's still going to be a big photo shoot. We are going to have fun.

Happy Holidays to All our friends and loved ones!

Visit to Andy's School

Since today was the last day of school before Christmas break begins, Andy's school had some special holiday activities and parents were invited. I was able to get a sitter for Jon and attend this. It was really nice. Andy really didn't attend much, he just was wandering and doing his own thing for the most part. He did get a couple of presents, I will talk about that more in the post I will write after this one. I was able to meet one of the speech therapists that work with Andy this morning. They also had the communication device that he is using out so I could see it in action. There were a couple of other parents there. There was still a lot of activity and a lot of people. The schedule was off, and Andy is not used to me being at school. This is an integrated 4K classroom. There are 16 kids in the class, one special ed teacher, one regular ed teacher 2 aides (one is specifically for a child that has extensive special needs, the other works a lot with Andy but is available for the whole class). Last year there were only 8 kids in the class, and it was strictly special ed. This is probably one of the reasons why he's having a harder time. When I first came in he was sitting at the table eating snack with his classmates. Once he seen me he wouldn't sit down. He kept turning on and off the lights. The door was opened so parents knew they could come in, but Andy kept leaving the classroom and I had to get him twice. They closed the door and from there he pretty much played on his own. From here I will tell about this with the pictures.

This had me a bit worried this would be a very short visit when I seen this as soon as I walked in the door... already trying to give me my jacket???


This is the communication device Andy is using at school. He's learned "more" quite well. The speech therapist said he knows the core vocabulary, but only actually uses more consistently on the machine.

I never knew he liked puzzles this much. It was hard to keep him away for a while. He started out actually putting them together. After a while he wanted to take them ALL out and dump the pieces and make a mess. Obviously that wasn't allowed. I wish I knew he liked puzzles before I did my Christmas shopping. I still can get some for him after.

Holding a Rudolph puppet. Mostly running around with it like he does with clothing at home.

Just like at home, he loves the phone. They have the same idea, plug it into electricity so they can push buttons and have light and sound, but not plugged into a phone line so they can't call anyone!

Andy was followed around with this throughout that hour plus. When he wanted a toy or something the SLP had him push the "I want" button.

Picking out train cars

Getting them set up. I really didn't know he was into trains either.

He knew how they went together. No, it wasn't on the track but he did keep them on the table!

He LOVED pointing to the days on the calendar. They said he picks it up and does this every day at circle time :-) Eric loved to do this too when he was this age.

Rudolph is joining Andy at the magnetic maze thing.

Welcome To Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Andy and Jon with Snuggly Friends

None of my boys have been real into stuffed animals, at least that I known of. For some parents this would be wonderful since their homes are overun with them! A few have shown up here and I keep them in the toy box. One morning about a month ago (yes, that is when these pics were taken, I've been slacking on the blog updates)Andy found a Beanie Baby dog in there. I honestly didn't know we had this. He just kept holding and looking at it. He handled it so gently, there were times it almost looked like he was trying to "talk" to the doggie in his own way.


What a big smile!


I LOVE this picture of Andy. If I didn't know better, I would think he was "talking" to that dog. He was holding and handling it so gently. Andy's been having a hard time the last few days handling his frustrations. Earlier today I gave him doggie during one of his moments and he calmed down. There is a golden retriever at the house next door that he loves too. Mommy would love to have a real dog too, but I don't think the landlord would appreciate that. These 3 wonderful little boys keep me out of trouble :-)


I put up the edited version of this because it looks so much cooler than the blurry original. These boys look so comfy here. Jon is holding a Care Bear. I believe it's Goodnight Bear. It's blue with a moon on it's belly. We've had this for about 5 years. I bought it for Eric but he had no interest. It made the last 2 moves amazingly. Jon is the only one that will touch this.




Jon found a very soft cuddly teddy bear. His name is Mr. Jones. It's the mascot of his dad's employer. He will hug the bear, but most of the time Jon wants to throw it like it's a ball??? Whatever works, I'm glad they are finally getting some enjoyment out of these toys.

School Pictures

Just got Eric and Andy's school pictures. For most people this isn't a big deal. Sometimes the quality of school pictures isn't the best. I do have to say this year I was pleasantly surprised. The boys love it when I take pictures of them with my camera at home. The lighting, equipment, the strangers throw off these little guys when portrait studio or school pictures are taken. I wrote a note to the photographer and teacher on picture day telling them to do their best to get a shot of them that looks decent. Don't try to pose them, don't try to make anything perfect. Quick as possible is the best with these guys. Here are the results!

Eric's 2nd grade picture

He actually smiled better last year, but this still looks awesome!

Andy's 4K picture


Here is my handsome hazel eyed boy. I wish I knew where those eyes came from! This is beyond awesome! When he was about 2 1/2 years old I took him to Sears with Jon to have pictures taken. Andy would not even stay in the room, let alone let them take his picture. At the end they did one close up shot of him that did look nice with some of their enhancements. That was not a fun experience to say the least. Last year they had trouble getting him to sit, the photo was OK but you could tell it was done really quick. This year he did great. I first seen this picture on the Safe Kids ID that we got for free. Thankfully the photographer let me order these later without the inflated costs of reprints. I could not pass these up.

Autism Night Before Christmas

This is a poem written by one of my Facebook friends and autism activist Cindy Waeltermann in response to family frustrations that come with the holidays. Cindy is the founder of AutismLink and the Autism Center of Pittsburgh. Links are in the resources. Thank you for letting me post this here.

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned…….

Another Goal Accomplised

For the longest time Eric would not accept anything on his head. This is a thin plastic fireman's helmet that Andy got from school when the fire department visited. Now if he'll keep the hat on outside during winter weather... I could not get a picture where he kept his eyes open. Like mother, like son.

Time to brush

Brushing Eric's teeth has never been a fun job to say the least. It's always a fight. The therapists and I decided to teach him how to brush his own teeth. In time he started accepting the brush in his mouth without a fight. We have worked up to him doing most of the brushing himself. He's now ASKING to brush his teeth. I never thought I would see the day.



I'm enjoying this excitement while it lasts. The next step is kid's toothpaste. I've been using baby toothpaste because he don't get the rinse and spit thing yet. If we're able to help him get this far, it will come.

Budding Artist?

Most likely not, but this is still awesome. A year ago it was very hard to get him to sit down to paint, color, ect. He just isn't interested in it. At school they say he'll go along with them to do these kind of projects to get it over with. One day while I was at the dollar store I bought some watercolors thinking the therapists would like to try this with him. I was right. It took some prompting and hand over hand to start, but he eventually took the brush and started painting. He was just stroking it wherever on the paper, but we were thrilled to see him doing it.





One of the therapists is an art major. She's interested in art therapy. Last weekend it was really nice outside so she brought Eric outside with sidewalk chalk. I was out with a friend so I didn't see them do this. This is what I came home to



I asked this therapist when she was here if Eric actually helped her with this and she said he did. Sidewalk chalk is something I am not fond of touching, so for him to do it was surprising to say the least. I'm quite impressed at how this turned out, and with Eric being willing to participate in something like this.

Fall Festival

On Friday night I was able to secure some respite time so I could take Eric to the fall festival at his school. It was a great chance for me to spend some one on one time with Eric. It's a good thing I didn't have to take the other 2 boys, we would have never even gone in. When we got there, the line for the tickets went out the door. I never expected to see this many people. I was very tempted to just to leave, but I didn't want to waste the respite hours and wanted to give Eric a chance, and to see how he would deal with this. I bought $5 worth of food and game tickets, the line went faster than I thought it would. The food line wrapped around the cafeteria the whole time we were there. Forget about buying supper for me there, Eric would never tolerate that line, nor would I...

We looked around some more and saw activity in the gym. They had different contests there, one was a hula hoop, there was a basketball one and a scooter race. Eric could not hula hoop. That's OK, so we went to the scooter race. The kids had to sit indian style on the scooter and one of the volunteers pushed them. Eric wanted to ride his own way. I pushed him along with the race, but he didn't count. This was the highlight of the evening.



We were able to do this twice before another child asked if he could have the scooter. Next we tried the cake walk. He was antsy at first waiting, but once the music started and we started walking he got the hang of it quick. He was even following the lead of the other kids. The lady running this was Eric's para, so she was nice enough to let me walk with him. We did this twice, didn't win anything but that's OK.



After this we tried a beanbag toss, but he wasn't interested after the wait. All of this lasted an hour, the whole time with lots of people, noise and activity. He held it together quite well until this point where he was just done with it. Not that I could blame him. The food line was still long as ever, and I had enough with all these people myself. He kept leading me to the door, and so we went. As you can see, he had enough.



I'm very proud of how Eric handled himself in this very busy, and unexpected situation. An hour for him in this is excellent. The school put together a very nice event. They did make the best effort to accommodate to Eric. I wish we could have stayed longer and done more, but this was still an awesome time for me and Eric.

Way To Go Eric

He was kept quite busy last weekend. Yes, this is still cheerios. But we are trying to get him used to using the spoon, and a bowl. There was a lot of crying, fussing, and tantrums at first, but he did it. Persistence pays with these boys. If we can get him to take the cheerios off the spoon, the hope is he will open up to a much larger variety of food. The sitting down part, we will take care of that in time too :-) For now, we'll take what we can get. Yeah Eric!!!

Fall Fun

Eric's therapists took him out to play in the yard last weekend. Playing in leaves is great for sensory activities. I've seen Eric hold leaves in the past, but putting his whole body in them is another story I guess.



Here was the result of that, he's otta there, fast!



He wasn't too crazy about them falling over his head either. Thankfully it was just a hand full from me.





This is more in his element. He found a baseball that his dad left here and was having a great time throwing that around. This was a great shot of him holding it.



Andy LOVED the leaves!

Adventures of Jonathan

These are pictures from late summer to present. I decided to post them here because a good number of them were taken during his therapy sessions, EHS visits and picnic, speech class, ect. The brighter spots from Wednesday's EHS home visit are included.

Jonathan

Jon has been followed by Early Head Start and Birth to 3 since he was born. With 2 brothers having extensive developmental delays and diagnosed with autism, they decided to keep a close eye on him. During the first year there seemed to be no major concerns. He had some muscle weakness and low tone, and some sensory issues but no major issues. The delays slowly started creeping in. He is now very behind in speech, at the 6-9 month age range in most areas. I've started noticing a lot more stimming behavior. He now runs around aimlessly. His response to his name, sometimes yes, mostly no now. Eye contact has become more sporatic. There is growing concern. The good news is that Jon does make more effort to interact and talk than Eric or Andy do, and he is more willing to touch different things. The feeding resistance is starting to creep in, again not as bad as his brothers but something we have to keep on top of. Yesterday I had the camera out, initially just having fun taking pictures, during Jon's Early Head Start home visit. When the focus is on Jon these behaviors become so much more apparent. Some of this may be hard to see as still images, but I'm sure most will get the idea. Here are pictures taken during that 90 minute visit, in no particular order.












He's shown some of these behaviors in the past, like the running off and lining up stuff. but some of this was new. The thing with his ear, and the stimming by his tummy in particular. The movements were odd, and quite jerky. The family advocate expressed concerns at the end of this meeting, and noted deterioration. We started discussing getting going on evaluations for Jon. I thought about it yesterday. This morning I made the phone call to CHW Child Development Center and got the process going. While I had hope we would not have to go here again, it really don't surprise me that we are. I know the process now, so we can go through this without a lot of delays or surprises. At this point, I'm ready for anything. Either we will be told that there are no issues, or we will be getting him the help he needs as early as possible. There is no way to lose with having the evaluations, although I'm pretty sure I know how this is going to turn out. Yes, I am sad and tired. But I know that we've all made it this far, and with big changes in our lives in the last year to boot. This is a familiar road, I'm informed of the process and sources of help. It will be OK no matter what happens at that eval. It's looking like this will be taking place sometime in January. I'm also going to try to resolved the insurance issues with the genetics clinic, and push for more testing to rule out anything physical, with both Andy and Jon. Three kids with similar issues should say something.

This afternoon the county caseworker for the CLTC waiver (which funds the therapy) was here for recertification for Eric and Andy. It looks like Andy will be starting therapy in February or March. She is also thinks I should qualify for more respite through family support. That would be awesome since I'm burning up most of my 6 hours a month for Jon's speech class and Dr. appointments. We were also told it would be likely that Jon would qualify for some of their programs too. I was told to give her information as the evaluation process continues. It was a long meeting, and a long , emotional day but it's all worth it. I know this is the right decision. We will see where it goes from here.