Autism proof decor.

When I first got married the walls were covered in frames, and posters and prints, the bookcase had books and the coffee table had magazines. The kitchen had glasses and dishes. There were glass bottles in the fridge. There were pretty toothbrush holders and soap dishes in the bathroom, also fancy towels with pretty designs.
 ITS ALL GONE NOW!
What hasn't been broken or torn to shreds, has been packed away in a fashion that would make a refugee's head spin, my usual package to pack stuff up in a hurry, Diaper boxes, my closets look like a display for Huggies.

When you first have children you go into survival mode: Eat, sleep, go to work, pay the bills, run only the things you need errands. throw in a few fun times with friends and hubby and that has been our life for a while, with new diagnosis and Inky's birth, I felt like our survival mode lasted longer than it should.

I am starting to want to do things to my house, but I have a different vision, instead of a living room, I want a sensory room for Binky, I think it would help him stay calm. In the kitchen there is nothing Binky can break so I am able to relax a bit. Last night Binky got mad and swept off things in the kitchen and I didn't flinch, nothing we own now can break. or if it does break I can replace it cheaply.

I want to make Binky's room something nice but also something that wasn't going to blow up in my face if he tore it up in a meltdown, so I did some research and got some ideas and today I went to the store, I got some poster tape and self laminate pages and a great site that lets me legally print pictures of helicopter and BOOM! Hard plastic sheets of paper stuck on a wall with cheap poster tape, and it cost me about $14. for 10 pictures. I put Five up for now, and I am going to wait to see what I will need to do next.

 I should rewind and tell you what started this episode of design star started. I wrote to Bell Helicopter and told them about Binky, and his love of Bell Helicopters, I even sent them a picture of Binky with a Bell Helicopter and the Fine people of Bell Helicopter sent us a lovely gift package and in it was a large poster of Binky's favorite helicopter the V-22 Osprey, or as Binky calls it Airplane Helicopter, he says it like you would say "his name is John Smith." It was so nice and I wanted to frame it but frames take time(which I have none) and cost money ( which I have some but I need it for other thing) and in a pile of taken down art work I found a large print, and suddenly I realized it was near the same size as the Osprey poster!

 so now this wonderful poster that had been rolled away was out in the open and I wanted to put it in Binky's room and it looked great, but now I realize that at age 7 Binky need a more grown up/kid friendly room.  I looked into wall decals and poster which should be in this week and with the addition of the laminated photos,  the room is coming together wonderfully, Binky's keeps all of this airplanes and helicopter in his room so they blend right into the decor. I figured out how to have a nice home and still keep Binky safe.

One down, another one to go.

I finally get Binky to sleep, it is wonderful, the other day he was asleep at 8:30pm and slept all night. Now, Inky is making an appearance at midnight I am not sure why, he is wide-awake and stays up until 2:30-3:30am. He only has two requests milk and corn chips and wants me to watch Disney channel in his chair, I guess that is three but its 2:30am and I am barely awake. I am in a funny position, do I go the same route as I did with Binky, I know that children with Autism have a LOT of problem sleeping and Binky is the KING! Inky, is taking a very nice role and next in line to the throne.  I ask again, do I do all the same steps I did with Binky or do I talk to Dr. Good, and just skip ahead?  to what I know is probably true, that Inky is going to have the same issues, with sleep but he does not have the Autism. He passed ADOS, so for right now we are saying he does not have Autism. I really need him to go to sleep; it would be nice not to have four cups of very strong coffee just to get through the day. Melatonin was a big fail, I even got some good stuff from Whole Foods. Inky is a pig and eats lots of food. This is the life.

 

Peace for now.

oh, so hard to keep up with the blog, I slipped on a banana peel and hurt my arm, and had a busy weekend, and now it is Monday, Where does the time go? On Friday, I had to call Dr. Good, Binky was still very anxious and still not going to sleep about 30mins to an hour after taking meds like Dr. Good wanted. I call and tell him it is still the same, even after and increase. I get a call back about a new med, but I didn't know which med it was to replace so I had to call back and come to find out it is in Addition too, so Binky now take three meds to go to sleep. It was quite the feat to get to the store, I had to call a friend, thanks to Binky's medical bills, we only have one car and Binky was going to have his ABA come by and work with Binky on how to get over daddy leaving for work.  I get the meds and prep them before going out with some friends, Hubby reported Binky took his meds fine and was asleep shortly after I got home, Inky is still not sleeping but that is for another day. Now it is Monday and Binky is great, if I had the time I would have called the Dr. good and said way to go!( I have an image of a football stadium with a jumbo tron Saying WAY TO GO!)  Binky sleeps all throughout the night and goes to sleep 30mins after meds, and he is happy and not whiny  and most important like right now he is singing and dancing around. so I get the best of both worlds a calm but happy kid. Daddy leaves for work and Binky is fine with it, No more tantrums! Binky is able to handle other things happening in his life, on Sunday we had a big rain storm, and he was fine going in the rain, (we have lost our umbrellas) and then we had to go to the grocery store and Binky was fine, he even got Inky a toy car. It was cute Inky was whining for a toy car and Binky goes," Inky here is a car for you." .  a friend was late coming over today and instead of hear where is my friend over and over and over again, I only heard it asked once and he accepted the answer it was really great. i guess this is how the other half live.

Make your life for you.

I made my house to what serve my needs and my children's needs. I have my love seat in the kitchen, Why? I could never get Binky to sit and eat in the kitchen he always wanted to eat on the love seat, so I moved the sofa to the kitchen and now he eats in the kitchen. Funny but true. I no longer have a living room, I have a play room, there is a crash pit in my playroom where Binky likes to wrestle with Inky, and where Inky shows me new moves that were not in this years Olympic floor exercises. All the toys in bins with the exception of annoying toys, which are at this point, Thomas trains sets and any form of blocks. There were several tables in the room, but the coffee table had  to go, Binky was using it to try to hang from the ceiling fan, there was a Thomas table, which had to go because Inky was using it as a trampoline, which is funny because we have a trampoline, which is near one of the windows which the kids like to look out into our backyard and see the funny birds and squirrels. The dream is to make it a complete sensory rooms, like I see at Binky's OT place. Binky has been very anxious lately and no matter what we do, we can seem to get him to stop throwing stuff,  I recently gave away all of my wine glasses, I look funny using a plastic mickey mouse cup, but at least I won't have to worry about shattered glass anymore. I have packed away all of my coffee mugs, and plates and bowls are gone too.  We use paper plates and bowls, for two reasons one, we are too busy to keep up the demands of dishes we even have a dish washer and two Binky would open the dishwasher and take plates and like at a Greek wedding would OPA! it all over the house, I have to say I was impressed the day the plate came flying over the banister and didn't break.  I have tried all the baby proof locks but both Inky and Binky are too smart for those now, so I am stuck with just staying alert at all times. Our bedroom has the DVR and if I am nice, which is most of the time, I love hanging out with the kiddos we watch some Disney Channel show, before bed. There is no rule you have to have a sofa in the living room, make your life for you, some make think you have lost your mind, and others will be like "why didn't I think of that?"

Autism is not that hard. I can't believe I just wrote that.

Here is an update for Binky's sleeping, We are still having a lot of problems with Binky being very anxious and very hyper. We went to the Nero, I call him Dr. Good. Dr Good, didn't see any problem with cutting out all sugar to make Binky not so anxious, and we are doing an increase in the Triliptal. If this round of increase doesn't work then we are going to try to something different. I like what has been happening with the Triliptal and I am hoping to keep Binky on it for a while. The most interesting thing that happened was in the waiting room, Hubby is with Inky and Binky as they walk up and down the hall, they love walking up and down halls. I am talking to a mom, her daughter has ADHD, and needs Dr Good's help getting her to sleep. We started talking about our kids,and for me, as I have a blog about my kids, I don't mind sharing, I am an open book. She asked about Binky and I said he has autism. Then she asked "Is it hard to deal with the Autism?" I was really surprised by my answer, "NO, you adapt.  It was hard at first but then your figure things out, and it gets easier." I can't believe I am at that place, for so long, I wanted to tell the world, This is sooo hard, you can not understand how hard this life is, and all the things, you have to do, to get by day to day. Now, its hard, some days. If I can get Binky's anxiety down, I would be golden. I have figured out how to deal with Binky, on a day to day I know what he likes, and what he eats, and watches on television. Now, that I am able to get some sleep it is really, been easier to deal with Binky.
 Inky is another story, I still am working on dealing with one Nero typical and one with Autism. Inky, will ask for something and then I get it for him and he is like NO! Binky had so many sensory issues, when it came to potty training, Inky just tells me NO! I got one down another one to go. I guess it does get easier, Who knew!

Meds are failing and sleep is becoming a dream.

Binky doesn't sleep, never really has, it has been an on going problem, and we tried several different meds, and all of them had failed. I found my childhood Nero and was able to bounce some ideas off of him, and we decided we were going to look for a Nero in my area to do a full Nero work up on Binky, to find out what was going on in his head. When I got to the Nero here, I was very happy with what was happening and he said many of the same things my childhood Nero said, and we decided on Triliptal and trazadone and for all of summer I got some sleep and Binky got sleep and life was good, but about two weeks ago things started to change and I figured when school started and we were on a normal everyday schedule things would be OK, but now I don't think so, For the past two nights Binky is waking up and coming into our bed or he is staying up. I have fear that these meds will stop working and I don't want them to, they have been so helpful to Binky and I am hoping that this is just a need for an increase. Binky used to be so sweet and now he is a terror, major tantrums and throwing things. It has gotten so bad, We are only using plastic plates and cups and paper plates. I even gave away my wine glasses, nothing that is breakable is safe in this house for right now. Thursday is when we see the good doc and I will update then.

Happy about meltdowns! :)

I know you read it right, I am happy about Binky meltdowns, you see Binky didn't sleep very well for the last couple of years and he would nap and stay up all night and it was soo hard for the family but mostly me because hubby had to go to work so it was my job to stay up, beside I am a hoot owl so it was a wonderful excuse to stay up. I would tell Binky's ABA that I was having all these issues with meltdowns, but then with the ABA Binky was fine, Yes it was like that WB cartoon with the singing frog, only the guy would see it and no one else, Everyone who met Binky was like he is soo sweet and we just love him he is the perfect student. Well the jig is up, Binky is having meltdowns for everyone to see, and yes I am happy about it. Why? We can't solve what is causing the meltdowns and tantrums if we don't see them, sure I can tell the ABA but until yesterday I swear she thought I was making the stuff up. Yesterday lets talk about that, so we go to a mass retailers, it doesn't matter which one,  during the car ride, Binky listed all of them because they all have TOYS. We get to the store and Binky loses it, we didn't even tell him he couldn't have a toy, he just knew and was mad as hell. Started running away and screaming, and kicking and slapping both the ABA and hubby. It took most of the two hour session to calm him down, Inky and I went in to get Binky's meds and some new bath toys for Inky. Inky and I got some popcorn and a blue icee, and Inky smiled at people as they would walk by. When the session was over, Binky was playing Angry birds on the ipod and ok, as long as he didn't go back into the store, the ABA is floored by what has happened, she has never seen this at all, and it going to consult her boss, and come up with a new game plan. He had another meltdown today and some of my things, (mostly crystals cats I have collected for years) took the brunt of it, but while it is said that my kitties are in the trash can. I am hopeful that we can finally get to the bottom of this and end these meltdowns once and for all.