Diagnosis at last

Well today was the day. I dropped the kids off at my Mother's house and then picked Brett up from work. We drove up to the U of U and were advised that Jason is Autistic. =)

Yes I know, we've know for a VERY long time, but we wanted to finally get the official diagnosis. I kind of thought I would be a little upset. However, I wasn't.

He's Autistic. We've known that for some time. Getting a diagnosis changes nothing as far as who my son is.

The next step will be to see if we can qualify for Social Security Income. That would be very helpful in the event that we can get Jason to wear a loaner hearing aid. Of course it would also help with the many medical bills that Jason seems to pile up.

Keep your fingers crossed for us. I've heard that SSI can be a real bear!

Jason's Well Check

Jason had his well check today. He was absolutely insane! If Lisa wasn't sure he was Autistic before she is now. =)

He was bouncing off the walls the whole time. The lovely stool with wheels, ended up being a fun toy. He held on to the bar that raises and lowers it and he walked around it for about 15 minutes. I don't think I ever saw him stumble, or even give a hint he was dizzy. =)

That's my boy!!!

He is 41 inches tall which is over 97% in height, and 37 lbs which is 95% in weight.

He has a sinus infection, and will be on amoxacilin for 10 days. She gave me the name of a pediatric dentist just down the street, and gave me some advise for additional therapy for him. We discussed the possibility of SSI and what we need to do to qualify.

He got the flu mist, and a shot. He's doing well, and I haven't seen any signs of grumpiness. Hopefully this will not make a difference in his night. I would like to sleep!!!

Jason's friend Jean

Jason had Jean Delangelo come and visit him today. She brought a friend who is a student teacher. (I feel terrible, I can't remember her name.)

Jason didn't seem too interested in playing today. I was wondering if we over did the therapies this week. However, Jean went and sat on the stairs with Jason and drew some pictures. That pulled him out of his fit. Then I turned on the vacuum and got him upstairs. Yes! Jason LOVES the vacuum. He loves to have the extending tube suck on his belly, his hair, but mostly his hands. He sticks his fingers down the tube. Kind of silly, but it worked.

Then she video taped Jason and I playing with the drawing board, and then his bead play cube. He loves to have me make funny noises as the beads go up and down the wire.

Jean pulled out a pop-up tube to see if Jason would climb through it, or throw the ball through it. Instead he tried to stand on top of it. Since it was a pop-up tube it didn't hold his weight very well. So instead we put it over his head and played peek-a-boo. That worked.

At this point Jason seemed to be done, and went into the kitchen to ask for a Popsicle. Jean also liked this. She loved to hear him vocalizing.

Jean was very impressed with Jason's progress. She liked his vocalization, and his eye contact. He was also gesturing more then he was before. Very encouraging!!!

Jason's Friend Joel

Joel the Occupational Therapist, from Early Intervention came today to play with Jason. He is a really nice guy and sits right down to play with the kids and start the therapy session.

Of course I had to show off my AWESOME find with Jason's new swing. I found it at laceandfabric.com, he confirmed that it was a STEAL!!!

The first thing Joel did with Jason was "Brush" him. You take a soft fingernail brush and with long strokes brush his arms, legs, feet and back. Then he did joint compression. You just push his joints back together. That one seemed a little weird but he seemed to enjoy it.

Next he brought out an exercise ball and just bounced Jason on top of it. Jason thought this was pretty cool. This might be a purchase I will have to make in the near future.

Next he brought out some therapy putty. Which had the look and feel of silly putty, except silly putty is a bit more stiff. Jason thought this stuff was great, and Joel just played with him as he talked to Brett and I. Joel then put some beads into the putty and Jason and Joel pulled them out as they found them and then put them back in to play again.

Then Joel pulled out a puzzle, Jason's very good at puzzles. It was a different kind of puzzle, with big tall blocks. Since Jason seemed to have the puzzle aspect down, Joel tried to switch it up and build blocks with them. That didn't go over well. Jason had his first melt down here.

Then he brought out a Pound-A-Ball toy. You put the balls on top of the toy and have to actually push them to make them go down the maze. He had good eye contact with Joel as well as saying please for Joel to give him back the blocks. When Joel put away this toy, again Jason had a Melt down.

After that he pulled out a Pop Tube. You stretch them and they make a loud popping noise. Jason liked this for a few minutes, but only if Joel would help him with it. He did have a really hard time getting it to stretch.

Last he pulled out a Slinky. A big plastic pink one. Jason thought this was cool and played with it for quite a while. We discussed our focus until his next visit, which is to do the Brushing and Joint compression. We'll see if this helps to settle him down a little.

I love Early Intervention!!!

Jason's Friends Jean and Joan

Jason had his evaluation today with Jean Fowles and Joan the RN. I answered a bunch of question basically. Which was very satisfying today! From last year he progressed, regressed, and progressed even more! His motor skills are on the 36 month level, his fine motor skills are 33 months, his social is about 24 months, and his language is about 18 months.

But to be able to say, "Yes he is speaking" is so wonderful! Maybe he doesn't say the words exactly accurate but I can tell you that "Cu-cu" is Popsicle, "Tuck" is Stuck, and "MEEESSSS" is Please.

I was also very gratifying to see that the RN was confused as to why we thought he was Autistic. His eye contact was good, he was being social......to which Jean immediately responded that he had withdrawn completely, and had worried her greatly. The RN looked at me and said, "Good Job!"

I have an Audiology appointment coming up in the next few weeks. We'll be able to see how much he has improved or regressed in his hearing as well.

Long Day

Today is going to be a REALLY long day.

Saturday night Jason wouldn't sleep. We were up for a good 3 or 4 hours with him wimpering and coughing. I had tried to give him his inhaler but he fought it and although he got a shot of albuterol he still seemed like he was struggling. I took him into the front room and we slept on the couch for a little while. The cold air seemed to help. Then about an hour later he began it again.

I was in pain from laying on the edge of the couch for an hour so I went back into my bed and grabbed his inhaler on the way. I tried to give him another puff and he fought it. Then he grabbed it and put it on his face and started to breath. He grabbed for the inhaler and wanted to make it work. I gave him another puff and he put both hands on the face mask and breathed deep. Then reached for the inhaler again. I gave him one more puff and he held onto the face mask again, breathed deep and then fell asleep.

We went to church yesterday and he seemed OK. I talked to Lisa, the kids nurse practioner, and she said to come over after church and she'd check him out.

He has 2 ear infections, but the inhaler seemed to be helping with his Asthma. She gave us an antibiotic, and another inhaler that is supposed to help control his Asthma better.

We also discussed some things to help control my dangerous little bugger. He's found out how to climb up on the counters and my dresser. He really likes to climb, and he freaks me out!

Because of all his issues this weekend he hasn't wanted to leave my lap all day. I have so much work I'm going nuts. I should have worked this weekend, but really didn't want to.

We'll see how the day goes!

An Earlier Start

Last night for about 3 hours I slept on the floor, next to Jason's bed. Needless to say my back was on fire when I woke up this morning.

So I got moving a lot earlier then normal today. I'm trying to be more responsible and get Jason dressed and his hearing aid in to start the day. As you can see, I did it today.
However, it's already out and attached to my shirt. Mr, is not wanting to wear it. Surprise, Surprise! I'll put it in a little bit later and start acclimatizing him to wearing it again.

We had Joel the Occupational Therapist come over to our house yesterday with Jean the behavioral therapist. I really like Joel, he seems like a really nice guy. He said that the visit was mainly a formality and he'd already decided that Jason would need O.T. We had filled out an evaluation on Jason's Sensory concerns earlier and he said Jason only hits the Normal scale in one area. That is Sensitivity, he is OK with being hugged and loved.

We talked about Jason and our concerns. His issues, for example NO FEAR, and his constant movement, climbing, eating things that he shouldn't, his attachment to his bottle. Anyway, what Joel told us is that Jason sounds like he is a Sensory Seeker. So Jean made us a weighted blanket and weighted vest to see if these things will help to calm Jason down. We'll be having Joel come to our home 2 a month.

He's wearing he Aid again! Just needed to distract him with a sucker while I put it in. =)

Jason's Friend Paula

Paula came to visit us last night. This week has been so good for Jason she had to write really small to fit in everything that he has accomplished.

We talked about "infant massage" last night. Jason LOVES having his feet rubbed, so she thought that maybe having a good massage before bed that he might sleep better. I think a lot of Jason's improvement comes from staying home this week. He has been feeling stable and in control, so he's been able to progress.

I've got to be more diligent about him wearing his hearing aid. That's one of the things I need to work on this week.

Also, Grandma Siddoway found Jason a soft fuzzy blanket. I wasn't 100% whether he would like it or not at first, but as you can see he loves it at bed time! He didn't even try to get out of it.


Since the above picture is really washed out I took another one the next evening.

Jason speaks

I think!

This morning Jason grabbed a banana off the counter. Before I had a chance to ask him if he wanted the banana, he said "na-na".

I'll take it!!

Jason Update

Jason has said Da-da consistently for 2 days now. This morning he said ga-ssssssss. I'm so excited about his new vocalization. He really seems to be progressing this week. We'll have to see how it goes. I've been told Autism is 2 steps forward 1 step back. It's so nice to see progression, even if it seems so small as to different sounds. I also enjoy documenting them on my blog, that way when I'm discouraged I can go back and remember the baby steps.

Jason Update

We spent last night at PCMC from about 11:30pm-3:30pm. I'm actually feeling pretty good because we slept until 10:00am. Brett however is NOT, since he had to go do a training at a school this morning. Hopefully he stays awake.

Jason was wheezing sort of all day. It got worse as the day went by. He woke up about 11:00pm struggling to breath. He was working pretty hard, and I could see it in his belly. Everytime he took a breath you could see the bottom of his ribs like he was using everything he had to get enough oxygen. So I called Lisa, who was concerned he could have pneumonia.

My Dad came down to the house and stayed with my other kids, while we took Jason to the ER. They got the respiratory therapist in there to give him a "super neb" and we spent a while fighting Jason to keep the mask on so he could get the full dose of Albuterol. They also gave him a pretty good dose of Decadron and that seemed to calm down his breathing pretty good. Downside, my already hyper baby was super hyper. We got his chest x-rayed and they were nice and clear.

Basically he was having a pretty good asthama attack. They don't diagnose Asthma until they are 5, but this might be another issue. We'll have to see if it continues or if it's just an isolated incident. He is starting to pop and wheeze already this morning, I have to go pick up some more Decadron and his inhaler at the pharmacy. Hopefully this will not be permanent........sigh.

Jason's friend Dr. Peine

We went to see Jason's new friend Dr. Peine. We've met with him twice now, and I think I really like him. He's down to earth, and really seems to know his stuff. He said that there was an report on last night that said that Autism affects 1 in 100 kids in the U.S. Here in Utah it's 1 in 150 girls and 1 in 80 boys. The article can be found here.

He uses the surveys that we had passed out, to get a good idea about Jason, as well as a tool to educate us about the kinds of things that we need to watch for. We discussed and compared them to show us what his strengths and weaknesses are. It looks like he's definitely on the spectrum but he is not diagnosing it at this point. We just are trying to get a head start for him.

I took notes so that I can make sure to get this all down!!

1. No more then 2 hours of T.V. a day. I know he's 2 years old. This will actually be quite hard for me. I work from home, and my computer is in the T.V. room. I've used this to keep them busy for quite some time. This will need to stop!! Hopefully, I will be able to get my office moved in the room next to mine and his in the next 2 weeks.

2. Focus on Imitation. He needs to learn to repeat things. Since he's not verbalizing anything, we are going to start with clapping and hand motions and the like. Then we will use Behavioral Momentum to encourage him to continue growth. This will take rewards, such as edible rewards, social praise, or play. Once we get him imitating those types of things we can move to mouth control. Not speech necessarily, but using his muscles. For example blowing a ping-pong ball across the table, or blowing a feather.

3. Floor Time. We need to get down on his level and play with him and interact in a way that will draw him into the game. When we are working with him and we really would like to start him with the reward, we can use hand over hand manipulation and show him what we want him to do. Hopefully he will eventually get it, and respond to the reward.

Our goal is to Strengthen his good behaviors, teach him new behaviors, and decrease the bad behaviors. We are to focus on eye to eye contact and imitation. Dr. Peine suggested that we share his findings with Early Intervention.

I also spoke with him about my concerns for Samantha and her need for a lot of attention lately. He gave us a fun activity to try with all the kids and disposable camera's. I'll get into more detail with this when we are done with it.

Jason Update

I went to Dr. Hermann Peine today. He seems like a great guy, who focuses on the whole families needs. He seems like a very concerned and helpful doctor. I found this online that explains his credentials.

Ψ - Hermann Peine, Ph.D., Licensed Psychologist, Autism Specialist

Dr. Peine earned his doctoral degree in Educational Psychology from the University of Utah with a minor in special education. He completed his pre-doctoral internship at the Hospital for Sick Children Great Ormond Street in London, England – Department of Psychiatry. Since that time Dr. Peine has taught at the University level and worked at an administrative and teaching level in community mental health agencies, the Utah State Developmental Center and for Children with Special Health Care Needs at the Utah Department of Health.

Dr. Peine’s doctoral research and clinical expertise is with the Design and Treatment of Applied Behavioral Analysis (ABA). ABA is an in-depth analysis of antecedents and consequences to behavior that impacts the probability of learning new behaviors or strengthening desired behaviors using empirically based procedures incorporating a functional analysis of behavior. Dr. Peine continues to train parents and program specialists in ABA and has a particular interest in home and class room environment and how they impact children’s behaviors.

Dr. Peine is also a Marriage and Family Counselor. He specializes in treating clients of all ages, as young as 2 years old, with an emphasis on accessing and intervening with the individuals and families struggling with an Autism Spectrum Disorder and other developmental problems in childhood.

He watched Jason as he tried to tear his office apart, spoke to both Brett and I about our concerns, and tried to interact with my boy. He asked whether we were involved with Early Intervention, and what they have expressed about Jason. He also asked what it is that we would like to see happen with Dr. Peine's help.

We told him that we are just wanting to help Jason, like the rest of our kids, be the best person they can be. We want to give him the tools and know how to take care of his own individual needs.

Dr. Peine definitely sees a whole lot that is a concern. He does have things that fall in the Autism Spectrum. He could be ADHD, OCD, Autistic, or PDD-NOS. Dr. Peine doesn't like to label kids, unless it will give them help with their needs. So we are going to go back next week with some evaluations that we and some others will be filling out.

His suggestions were to get him off Dairy, and to get him on whole grains. Less sugar. He needs routine, routine, routine. We knew that already. We also need to find things to reward him with. He wants us to make sure to reward him for eye contact. He wants everyone to make sure, to not just give into him. To make sure that he works for his treats.

He also suggested to completely ignore his bad behavior. Unless it is causing harm to himself, others or property. We'll see how well that goes.

Jasons Friend Paula

Jason's friend Paula came to visit today. We discussed his progress, he's been trying to do more turn taking, and has been decreasing the fits. He has asked for his Hearing Aid a few times so this means to me that he is seeing a difference in his hearing with it on. He's been sitting in his high chair and staying put for dinner.

I shared my feelings about his asking for his aid, and how I realized the denial that I was in. She shared a letter by Emily Pearl Kingsley called "Welcome to Holland" that is very touching, it really does hit home with what we have experienced with the kids.

Click the link below to read it. It is definitely worth the read.

http://www.our-kids.org/Archives/Holland.html

Jason Update

Jason had an appointment with Dr. Morales today. He is the doctor that repaired Jason's palate last year. It was quite amazing, the appointment was at 9:45 am and I was in and out so fast I thought something was wrong. LOL!

The nurses assistant came in to the office to double check everything, and then when she walked out Jason waved and said "All Done." Crystal clear. Yay!!!

Dr. Morales came into the office within 5 minutes, yes I know I'm still in shock. He asked how old Jason was, and I advised him he would be 2 in September. He looked again and said, "Wow, he's a big boy isn't he?" I just have to laugh at this. Dr. Morales is so used to seeing kids with feeding problems that weigh 20 lbs at 4 years old. Then there's Jason, who weighs 33 lbs at 22 months.

Dr. Morales just wanted to check that his face was growing properly, that he had no problems with his teeth, and that the repair had healed fully. He also asked about his speech development, which opens a whole can of worms.

I advised him that he has a unilateral hearing loss and that so far he really isn't doing much communication. I told him that most of his sounds are guttural and that we are seeing Paula from the school for the deaf every other week. I let him know that we had tubes placed again, last week and that I'm seeing a pretty good improvement right now. I also told him that the next step will be speech therapy, and that we are waiting on the advise from Paula to pick the right one for our rambunctious whirlwind.

He said that the guttural sounds indicate that his palate is doing well. He says the late speech development is more likely caused from the hearing loss then a problem with his palate. He wants to see him again in a year to do the same routine check, and to see how his speech is developing.

Jason Update

Jason had his second set of tympanostomy tubes placed today. We had to be at the hospital at 6:30am, so we just had the other kids spend the night at my mom's house. They felt really bad, let me tell you!

Jason was not ready to wake up so he was pretty darn tired. As you can see my constant whirlwind wasn't whirling very much this morning.

Of course he snapped out of that pretty fast!
They called us back and we had his vitals checked and then we went to the O.R. waiting room. There he did his mass disaster of the toy's and we waited for Dr. Muntz and the anesthesiologist, Dr. Long. She was a teeny-tiny lady that wasn't ready to be up at that time of the morning. I don't think she smiled once.

When we had all the paper work done we started the short walk to the separation area. I gave him over to the anesthesiologist and he started to scream and throw himself around. Which is pretty normal for my little brute!

We waited all of 15 minutes and Dr. Muntz came into the room. He let us know that everything was fine. The tubes were placed and gave us a quick run down of what we were supposed to do with the antibiotic drops. In the middle of Dr. Muntz instructions they called us up to be directed back to Jason's room. Dr. Muntz just took as back since he was still running through the instructions.

When we got back there Jason was still out and had his breathing tube in. The nurse said that she was told that it was very important that we be there when he woke up. Which I thought was a funny statement, since neither Brett or I had requested anything of the sort. But the nurse finally explained that she was told 4 times that "He needs his parents, this one needs his parents!"

I think that he gave the anesthesiologist a run for her money! I've had a grin on my face all morning because of that statement. I know my son is a strong little monkey but I figured that the doctors could handle him!!!!

He's doing well. We have left his hearing aid out all day just to make sure that we don't collect any drainage but we'll put it back in tomorrow.

Jason Update

Jason had an appointment with Dr. Muntz this morning. He is the E.N.T doctor at Primary Children's. His tubes are out and completely not functioning, so he will be needing to have new tubes placed in July. That is the soonest that we are able to get an appointment, but they have him set up on the cancelation list.

He also seems to be appreciating his hearing aid. He was watching T.V. this morning while I was getting everyone ready for school. I went to put in his aid which was the ear he was laying on but he turned his head around and let me put in his aid without any complaints. I'm hoping that he has finally figured out that the aid is helping him. Yay!!!!!

He crashed completely in my arms after the appointment, which is not like my crazy boy!! He seems to have a fever so I'm going to have to check that after he wakes up.

Jason is wearing his aid!!!!

As you can see he is wearing his hearing aid!!!! He is doing so well!!!!!! He does still take it out. But he is not fighting to put it back in. He only seems to take it out when it's pulling funny. He's made my day!!!!

Jason Update

This is my baby on a good day! He is so busy he wears me out!! He hasn't been feeling well, and hasn't been eating. My In-laws watched him yesterday while I took Tori to her 5 hour doctors visits, and he was tilting his head to the side all day. I tugged on his ear just a little bit and he let out a scream. So I took him to the doctor today. He has an ear infection in both ears. I now have an appointment with Dr. Muntz the E.N.T. to see if we need new tubes in his ears. The old ones are not doing what they are supposed to so he will probably be going under once more. But I won't have to worry about that for a couple of months because I can't get into Dr. Muntz until June.

We saw Paula this evening and she was concerned about the infections and the delay in seeing the Dr. so we will be working on a few signs with him over the next couple of weeks. Sandwich, Potato, Spaghetti, Be Careful, Wait, and Milk. I should be getting his ear mold in the next few days but if his ears are plugged the only good we'll be doing with the hearing aid is getting him used to wearing it again. Oh well, such is life.

Work and Play

Jason hasn't been feeling well, he has a pretty good fever at the moment and is a cranky little baby. So we decided since we were home to make some Sweet Pepper Relish! I've been looking for this stuff in the store for years. I used to eat it at a bountiful bagel restaurant but it went out of business and no store around here carries the stuff. So Brett and I made it and canned a ton. Yes I said canned!! Brett did most of the canning, he's more intelligent then I and can pick up on that stuff faster. We did a really good job. I think all the cans sealed and now we have 24 1/2 pint jars of the stuff. It's really good. So if you want any let me know!!
Then Paula Pittman came to the house and we had a nice talk about Jason and his progress. He has started to talk to people, in his own language, and try and communicate. He's fascinated with telephones and can talk to Brett for 1/2 hour if I would let him. We'll see if things get better over the next couple of weeks. We are supposed to be repeating sentences for him to hear, and recognize. Hopefully someday he'll be able to communicate a little bit so he doesn't throw so many fits! He's starting to get frustrated, and I think a lot of it stems from not being able to say what he needs. We'll see how things progress.