ABA Weeks 12/13 and Speech Outburst

I haven't written in a few weeks and honestly have been so swamped. I am trying to literally keep my head above water and am just barely hanging on. Writing in my blog really is an outlet for me but it takes the back burner to everything else especially my family. You may not see me write as much as I did in the beginning but will try my best plus it's a great way to keep everyone up to date on our busy busy life.

Halloween:
Halloween was approaching and Jocie and I went shopping for Joseph's costume. This wasn't going to be an easy task as most materials besides cotton bother him and with the materials used these days for Halloween costumes this was going to be a bit of a challenge. We ended up picking between Brobbe from Yo Gabba Gabba or Mr. Potato Head so we let Jason be the tie breaker and decided on Brobee from Yo Gabba Gabba. Joseph loves Yo Gabba Gabba it is one of his favorite shows so I thought this would be an easy costume to get on him unlike last years monkey costume which he screamed in hysterics over, think again! When I showed it to him he instantly snapped "NO, NO" and really got upset. Well I had bought the darn costume from one of those Halloween stores where their policy is "no refunds". Great I just spent over $20.00 on a costume that would never be worn. So the Monday before Halloween when Joseph's ABA tutor and lead came for his evening session I asked them if they could help maybe getting him used to the costume and help me get him to like the costume and before they could even answer her comes my hubby "Oh there is no way you are getting him in that costume" well if anyone knows me I can't resist a competition and am very competitive so Jason went on..."I bet you $20.00 you aren't getting him in that costume" Oh it was so on! I got (our only tutor left), Cheryl and the lead Melissa to help me win this bet. Watching them work with him made it look so easy if only I could look at a behavior in him and know how to change it, I guess this is what takes time as a parent and why we receive ABA for 1-3 years. Anyways, what they did was first turned it into a game and not force anything on him. We used his token board and every time he would just touch the costume he earned a token and he did this about 4 times then got to play with his desired toy. The next step was just getting him to put 1 foot in it and followed the same token system and went on to the other leg then the arms. The hat part was one I thought would really be impossible and was not even expecting it, wow I was blown away again they even got him to wear not only the hat but the hand mittens!! We played this game every night until Halloween. When Halloween came around Joseph really didn't want to get in his costume and was not interested in the game. So I asked him if he wanted to go "bye bye" and that changed his mind and he put on the costume so quickly. We ended up walking around our full block to over 20 houses and he quickly got the routine down of knocking on the door, smiling and getting candy just for being so darn cute. Overall Halloween this year was huge success thanks to his #1 tutor Cheryl who came along with us. Which reminds me Jason still owes us $20.00!

Progress:
The past few weeks we have seen HUGE HUGE progress in Joseph. I am so amazed at his progress, it is like he woke up one morning and is imitating us and when I ask him to sound out a word and break it down for him he does it!! Granted these are simple words for him but still progress none the less. The only one he refuses to sound out is "more" which he can say "Momma" so I know he can at least make the "M" sound, instead he will use sign language for "more".  I can now even ask him to say "Momma" and he does, I just love it.  My heart is overwhelmed with a feeling that is just so hard to explain but if you have been in our shoes with a non verbal child and they start to make this type of magical connection with you there is no greater feeling, seriously no greater feeling. Joseph has this book he loves for me to read to him, and when I say he loves it I mean he wants me to read it to him back to back at least 5 times before he gets bored it. I have been working really hard at getting him to imitate me in making the sounds of the animals in the book and about a week ago when we sat down to read it he made every single animal sound!!! (See video below)  Another huge accomplishment, seriously I can't tell you the joy I feel even today as I am writing this.

I have a word list I keep on the fridge and I don't just put any word there he says because really at times he can say a word and never repeat it again so I wait to hear him say words independently for at least 2-3 days consistently before putting it on our white board on the fridge. His word list just keeps growing and this past weekend we added "I want" and "Cookie" to the list, oh how I love the way he says's "Cookie" in his sweet little voice! Needless to say Joseph got plenty of cookies this past weekend.

Next week we have our quarterly meeting with our case worker through Alta Regional Center along with the team from Capitol Autism to talk about his progress in the past quarter with his ABA therapy as well talk about his new goals for the next 3 months. The past few weeks Nimantha, consultant with Capitol Autism has been evaluating Joseph to see where he is today compared to when they first evaluated him and am really over joyed with the success we have seen. Most of you may remember when Joseph was first evaluated he ranged around 6-12 months at 26 months old. Well I got a copy of the report last night and am so happy to report all of his success even if like in his gross motor skill range it only grew with the amount of months that went by so realistically there wasn't progress there, but look at his receptive language he went from 8 months to a huge leap of 17 months!! Literally had they reviewed where he was at a month ago they wouldn't have gotten this progress, these past few weeks something of a miracle has happened to him and really feel God has blessed us tremendously. I can now ask him to give me a hug or a kiss and he does, or if I ask him to give Sissy a hug or kiss he will do that too. He understands so much when we talk now, life is really good right now. I feel so lucky to have all of this help for Joseph everyone has taught me so much in how to interact with him and his progress just shows that ABA was the right choice for Joseph even with the hiccups in staff we have had.

See below for some pictures and videos from the past 2 weeks. Joseph sure has been busy learning all sorts of new words and ways to express himself.

Jenn

What it took to get his costume on....Cheryl, Joseph's tutor is in the middle

Pumpkin Carving with Sissy

Trick or Treating

Some Family Fun this past weekend

"Joseph Dancing"

"Animal Sounds"

"Joseph Pretending to be his Tutor"


(I saved the best for last)
"Story Time with Joe Joe"

Week 11 ABA- Nightime Melt Downs

As many of you know Jason and I have a 14 year old daughter, Jocie. Since her birth she has filled up our every waking hours, needless to say we couldn't resist snuggling and sleeping with her from the minute she was born. We loved waking up in the middle of the night and just laying there and staring at her for hours on end. There is something so special about co-sleeping and Jason and I are huge fans of it. Of course our little Jocie became a pre-teen but that didn't stop us. Actually, she slept with us until I was so pregnant with Joseph she just didn't fit in our bed so she moved to our bedroom floor and eventually she moved to her room on her own. She was 12 when Joseph was born.

Needlessly when Joseph was born we were expecting to be able to enjoy at least a few years of co-sleeping with our little man, he had other plans. Joseph did sleep in our room but due to my complications after birth we could not co-sleep right away. Then Joseph ended up with severe reflux so the co-sleeping was put off again because he was having to sleep in a specific position to help eliminate as much as possible his painful reflux. So time went on, at the beginning of this year we tried co-sleeping again but Joseph just wanted to play instead of lay down. You see, Joseph is very routine based and has to do things that he does every day in a specific routine we have always done. So when we tried to have him sleep with us he didn't understand we were asking him to sleep because we weren't in his room, we didn't do our specific nighttime routine that he knew and understood he thought we were just hanging out in Mom and Dad's bed, it was fun. I eventually gave up on the idea of co-sleeping with him and just incorporated snuggling and burping my child- Yes I still burp Joseph before he goes to sleep, I really need to let him grow up and not try and keep him a baby forever. Keep in mind he is our last baby, so letting go is a bit harder than with Jocie. OK you caught me I burped her the other day too, I need to stop being so honest.

A few weeks back during Joseph's nighttime routine Jocie was getting ready for bed herself and had her bedroom door open and Joseph saw her light on and ran into her room and jumped right on her bed. Jocie thought it was the cutest thing ever and started this routine for a week where Joseph would have his nighttime bottle of Milk in her bed with the light out just cuddling with Sissy. Jocie would call me when she was done snuggling with him usually 10 minutes or so and I would take him to his room, right next door and lay him down. They both loved it!! There were no tantrums, no fighting, just like this was his normal routine. When the weekend came around Jocie asked if he could sleep with her, I went along with it. Honestly all I was thinking about was being able to sleep in the next day because he would wake her up in the morning instead of me, I really needed to sleep in. So the next day Jocie informed me she was done done done. He kicked her all night and was tossing and turning she didn't get any sleep. I felt awful, I had seen how happy it made Joseph to have that alone time with his Sissy in her room. It was like he felt like a "Big Boy" or like he felt he was hanging out with the "cool" kids. That next night when it was time for bed he threw a huge tantrum not going in Sissy's room but I stood my ground as well as the next night. By the 3rd night he was getting better then Jocie said he could go in her room so I agreed and oh he was all smiles and so loving, his whole face was just lit up. Unfortunately for Joseph, Jocie was done again. If you don't have a teenager this is what they do "Constantly change their minds" too bad this isn't the greatest thing for an autistic child.

So this past week after being slapped, pinched, punched, smacked, bite you name it I literally at my wits end and felt like giving up. I felt so bad for Joseph he didn't understand what was happening anymore. After taking a step back and really looking at the cause of this outburst of behaviour it was obviously caused by the change and needed to re-create this foundation Joseph was used to so this is what we did. I worked closely with Nimantha, Joseph's consultant with Capitol Autism. She said Jocie's room is to be off limits for at least 2 weeks including during the day, she had no problem agreeing to that one. I needed to be firm even if Joseph is upset. That is 1 thing I struggle with, putting my kids to bed upset. It's like that saying never go to bed angry or upset, I don't want my kids going to sleep upset with me. When I put Joseph down I need to leave him in his room instead of picking him back up and back to living room if he is crying. If after I close his door he is crying after 10 minutes then he is probably in some kind of pain, but let me tell you this past week he hasn't cried more than 2 minutes so I felt assured his feelings were more hurt than actual physical pain.

The past few nights we haven't had any behaviours and I am starting to heal from my bruises and scratches and overall the whole night routine is less stressful and has become enjoyable again. I know it is still too early to let Joseph go to Sissy's room because it would take us back to square one but know in the very near future we can re-introduce it. Sometime parents of children try to figure out why a child will act a certain way, even typical kids and really all it takes is sitting back and observing what has happened that lead to a certain behaviour and taking steps to correct it.

Hope everyone has a great week. Below are some pictures of our trip to the Pumpkin Patch.

Jenn

Me and Joseph

Week 10 & Another One Bites the Dust

Sometimes in this big world you can seem so alone when if you take a second to look around you aren't. I am very blessed to have such great friends and family. As I have written my blog or wrote something on Facebook a few times a week I get messages from different people, some bringing me to tears. I just want to say a huge THANK YOU to all of you for all your kind words you have written to me. I had read one to Jocie recently and asked her how I got to be so lucky to have friends & family to write such sweet words to me and her reply was so simple "Maybe people write you kind words because you need that extra cushion in the couch or that soft spot in your bed". Ahh I am the luckiest Mom in the world, she always says just the right thing and she is only 14.

Last weekend we did the Autism Speaks walk, it was very inspiring. It was great to get out of the house and walk with others that are going through similar situations as our family. We walked with Joseph's consultant on our case with Capitol Autism, Nimantha. She had me laughing so much it was great. Capitol Autism cooked us breakfast prior to the walk so it was great to sit down with other families and employees of Capitol Autism and talk. I had to hold back my anger for Joseph's tutor Misty as she was there too but luckily we ended up losing her so we had a great time.

This past week with ABA was full of changes. First the lead on Joseph's case moved to Sacramento to go to school so due to the distance they assigned a new lead, Melissa. Melissa came over this week to meet us and it was a very positive meeting. As I ask everyone that walks through my door I asked about her background and her experience with autistic children. Melissa not only has years of experience but has her own personal experience with autism, 2 of her 3 kids are autistic. She is so sweet and Joseph took to her quickly. I look forward to what lays ahead with Melissa and I asked her some questions about her experience with Autism and it was great she is so open with me and honest. Change can be scary but sometimes it is for reasons other than you and I may know at the time.

On Wednesday Joseph had his MRI and it was traumatic to say the least. While in the waiting room a nurse came out and told us she needed to put cream on Joseph's hand and tape it on to help numb it which will help reduce the pain he would feel from the IV. Jason and I were trying to explain to her that Joseph is not a typical child he is autistic and placing something on his hands he will flip out, she quickly replied "I work with these kinds of kids all day long I know what I am doing. If you don't want him to be in less pain then I don't have to do it" We kept explaining to her how this wouldn't work and she was just so cold and literally heartless. So while in the waiting room with 20+ other patients and Jason holding down Joseph she puts the cream on him, while poor Joseph was in hysterics. Before she could even finish the 2nd hand he got the cream in his eyes and we just old her to forget it, this just wasn't working. So she left while our son was left in the waiting room with us in hysterics. He barely could breath and just kept saying "Go, Go, Go" and trying to take us to the exit. Then the sweetest nurse came out to get us, unfortunately Joseph is at a place now where if he sees a person in scrubs or an exam room he goes back to hysterics. I don't blame him at all!!! So when the doctor came in we decided to give Joseph a sedative drink to calm him down. Let me tell you it was the funniest thing ever, within 10 minutes he was laughing and pointing at the pig in his book. Yep my kid was a bit tipsy. They let me stay while they put him to sleep and I was sitting there with him talking to him and next thing I knew his eyes just closed within 4 seconds of them putting the IV in. It was the craziest thing ever.

Waiting for Joseph was so hard, either Jason or I have always been with him. I had to put trust in the doctors and nurse to watch over him like I would. About half way through I had them check in with the doctor because I was going insane not knowing. The sweet nurse came out and reassured me everything was fine, and it ended up being. As we left the MRI, we ran into the mean nurse and Jason stopped her and told her, maybe next time you should offer the cocktail sedative before the cream for autistic kids. (First time ever Jason mentioned the word autism and referred to Joseph in a sentence) Her response was great, "Well if your son ever has a MRI done again you can tell them that". Wow nothing like listening to parents and possibly helping future patients. Overall looking back with Joseph in hysterics and the mean nurse that combination just made the experience awful. Jason and I agreed there is no need to test Joseph further, we know he is autistic and we know his strengths and weakness'. We just can't put our little boy through this ever again unless there is an obvious medical reason for it.

I woke up sick with some virus on Thursday and was literally laid out for 2 days. It was no fun, but as I have said a million times before things happen for a reason and this is why I think I ended being sick and not able to go to work. On Friday, the tutor Misty was here and if you read last week's post you would know she was treading thin ice with me. I noticed about every 5 minutes Joseph getting upset with her and frustrated( he doesn't do this with the other tutor), anyways she asked him to do the signs for twinkle twinkle like this "OK Joseph we are going to sing Twinkle Twinkle now so sit down" and he didn't want to and he told her "no" (one of the few words he verbally says) and he came and sat with me. Just for the record this is not the proper way to work with a 2 1/2 year old. This is too structured for them at this age, it should be way more play based. After sometime Joseph requested balloons with PECS and she refused to give it to him because he had not done the twinkle song. I told her excuse me but when a child requests an item you need to give it to them right away and she replied "no" because he didn't do the song. Needless to say I was pretty mad on top of being sick. So I called the Consultant, Nimantha and asked her was I wrong? If I am wrong by all means I will own up to it. Wow, I was correct. With PECS if I child requests an item correctly you should give the child the item immediately otherwise you defeat the purpose of PECS and could set him back 2-3 weeks worth of hard work. I told her I was very furious with Misty's actions and the tone she took me was out of line. I ended up calling the office as well and spoke with the clinical manager who is Nimantha's boss', boss. She agreed Misty was out of line and I explained what happened last week and she told me " I am going to guess you don't want her back?" So another bites the dust....as my facebook status said. 

Friday night we had our bi-weekly team meeting at our house scheduled and it was going to be arranged that Misty was being dismissed immediately from his case and not to come to the meeting. My darling teenager played a prank on me and says to me from another room "Mom, guess what? Misty's here" Oh the blood was boiling I was ready to politely ask her to leave, knowing me with the anger I had at that point it wasn't going to be nice like that. So who walks through the door.....Cheryl, the other tutor!!! Oh my child is truly rotten, ha ha. So during the meeting I made sure the one's that are left on Joseph's case are well aware that they understand what I am looking for and pretty much said if everyone runs things like Cheryl it will go smoothly for all. So now they are on the hunt for another tutor because unfortunately due to the amount of hours Joseph receives we can't have just her. So because I don't sit by quietly I will be in contact with Capitol Autism's hiring manager to ensure she knows exactly what our Little Joseph needs as far as a new tutor is concerned. They obviously need help in picking staff.

Wishing everyone a fabulous week!!

Jenn

Pictures for Autism Speaks Walk

Week 8 & 9 of ABA & Momma is here to stay

I haven't posted in almost 2 weeks, honestly been on a roller coaster emotionally. A lot has happened as far as Joseph's progress excelling while other things have hit a wall so here we go.

If you follow me on Facebook then you know I have such a strong desire to find other Mom's in our community to connect with. I love our family and friends but in between work, therapy, and the kids I just don't find the time to meet up with anyone. I feel like I am stuck in this bubble called "our life". My Mom is great, she knows how crazy it gets and will just stop by to visit and give me a hug and it is always at the right moment I need it. I also have a great friend at work who always listens to me and lets me vent whenever I need too. As well I have found some great friends through Facebook that have kids that are Autistic and we understand each other, but it is just not the same as calling up a friend and meeting up at a coffee shop and being able to totally get what the other is going through and I need this so desperately. There is nothing like having a friend that can totally understand exactly what you are going through. I can explain it my family and friends but they will never totally understand, they can be sympathetic but it is just not the same thing.

About 1 1/2 weeks ago during one of our parent trainings I have to do for Joseph's ABA at the house I was talking about how I wished I could find another Mom I could relate to, I went on to say how I just felt like I was the only Mom in Plumas Lake with an Autistic child. I was told well you are not the only Mom there are other kids out here that receive services from us. I was super excited only to be disappointed because they couldn't tell me where but that if I looked outside I could see the house. WOW...that close!! I got so excited and put my PI hat on, I offered to give my information to them to hand to the other family if they wanted to contact me but that was not an option either. Darn. Well I don't take no for an answer ever so on the hunt I went. Plumas Lake has a website/forum that you can post whatever sell things, complain about your neighbor, all sorts of stuff. So I searched on there for the word "autism" and found 1 family but haven't met up yet. So I decided to make my own post on their and didn't get much response and was starting to feel really lonely and lost and like I would never find another family. I kept pushing the ABA team for some information but that didn't get me much of anywhere which I totally understand.

Then out of no where I got a reply from another Mom with a son a little bit older than Joseph, he was 3 1/2 and we setup a play date last weekend at the park. The minute we got their Joseph connected with the little boy, was it because they are going through the same thing or was it because he was boy and Joseph has only played with girls? Maybe, but all I know is they had fun together. I even learned to let go a little bit and let him go down the big slide all by himself, he LOVED it. While we were at the park another Mom of a typical child came by us with her son who was also going down the slide and boy he was sure a talker and the Mom asked me how old Joseph was, I didn't want to answer her, I didn't want her to know my son was autistic, I didn't want her to give me the pity face, I just wanted to run so I ignored her. After she asked me a second time I said 2 1/2 how old is your son "He just turned 2". My heart dropped here her son is 6 or so months younger than Joseph can understand every single word she is saying and can hold a conversation with her and my son just kept saying "Go, Go, Go". I guess I am still in the grieving process of his diagnosis, I am in no way embarrassed of my son I love him with my whole heart but I just didn't want to see the reaction of another person and the shock and disappointment on their face. I guess this is why I really don't like taking him to the park and much rather stay at home and play on our swing set in the back yard. 

It was hard to talk at the park with other Moms so we ended up going to their house, they are not the family on our street but live about 5 minutes from us and I am so grateful that we got to connect. We talked for awhile about each others experiences and what we have gone through and what lays ahead for our families and kids. Come to find out we have the same case worker through Alta Regional Center, both went to Mind Institute for the "A" diagnosis,  and at one point had the same Pediatrician. She didn't have that great of an experience with the Mind Institute or the Pediatrician but it was so awesome to connect with someone that understands me to a "T". At one point we were talking and I was trying to explain how I felt about something and didn't even have to finish my sentence, she totally got me. Finally, someone gets my feeling and emotions. I look forward to our friendship blossoming and am so grateful for the opportunity to meet her. Since her son is a bit older I got to find out what I can expect when Joseph turns 3 and starts preschool which is funded through the school system as part of the Early Intervention process. I have been worried on what school he would go to and if he would be around typical kids, it is very important to me that Joseph is around typical kids. I was relieved to find out he gets to go to the preschool in Plumas Lake which is only a few blocks from our house so nice and close.

ABA therapy has been going great and Joseph is learning so much, it just reinforces the need for them in our home 5 days a week twice a day. Joseph hit a block with learning new words he was only saying a few words that he had learned about a month ago and it really concerned me. I heard other Moms of autistic kids mention their kids regressing so it is always in the back of my mind but with how Joseph has excelled I thought we wouldn't really have to worry about it. So instead of regression we just hit a brick wall. He stopped learning words completely so I mentioned it to his speech therapist, Monika and she evaluated what was happening as he wasn't hitting a brick wall but said that what happens is he will flip flop from learning to say new words and learning to understand words we are saying to him, and explained that he was starting to excel in his comprehension of speech and that I shouldn't be concerned. Monika was right on with what she said, he has been excelling in understanding when I ask him a simple question like "Do you want to eat?" and will respond with either the word "No" or if he wants what I ask he will use his sign language skills and ask for more via sign language. It is great to be able to ask him a question and him understand.

Just a few months back Joseph couldn't understand a single word I had asked him. From our personal experience speech therapy alone has not done this, it is a combination of speech therapy, ABA, and us working with him. Honestly a child can have all the therapy offered but if the parents and people around the child aren't consistent with any given thing you are teaching it will never work and you will see melts downs from the kiddos. I am not trying to toot my own horn but I work a lot with Joseph, I am constantly incorporating what ABA and speech therapy are working on with him. Every minute I spend with my kids even Jocie, is a learning opportunity and a chance for me to teach my kids something. Jocie is wonderful with Joseph and loves working with him and teaching him new skills like how to use a spoon, that was all her. Joseph is so lucky to have her as a big sister and I am truly blessed to call her my daughter.

PECS level 4 is going great, Joseph has had some regression at this stage it is a bit harder. He has to have the 2 pecs cards in the correct order otherwise he doesn't get what he is asking for. My last post I explained level 4 a bit but simply he has 1 icon that says "I want" and the second icon he chooses from his book to let us know what he wants but if he puts lets say the "Cheerios" icon first then the "I want" it doesn't make sense "Cheerios I want" so he has to start over until it is in the correct order. So since Joseph has moved up so quickly in the PECS the consultant with Capitol Autism asked if she could feature Joseph at their clinical meeting they have monthly which they feature a child that has excelled or a child that is regressing to share and so others can learn. She said they have never had a child move up so quickly in the levels. So of course I obliged and even offered for them to use my videos I have taken through the past 9 weeks to show how he has grown. She said she would give me a copy of the presentation when it is all done so can't wait to share with all of you.

I am also super excited to report Joseph is saying "Momma" and "Dada" consistently and appropriately. When he wants me he calls for me and I honestly have had some tears of joy when I hear that sweet voice calling for me. Finally what I have been waiting for, and this time I have a feeling it is not going to go away because he has been doing it everyday for the past week or so. The tutors have even reported during the day he is calling for me while I am at work. The other night I came home from work late and he was in his room playing with one of the tutors and heard me come in and ran into the front room calling my name all the way and gave me the biggest hug ever, ahhh deep breath the time has come the affection and recognition I have been yearning for all this time. Today he gave me a kiss when I asked for one, priceless moments like this just help me realize how blessed I truly am to have the sweetest little boy that I get to love every single day.

Since I asked the male tutor to be removed from Joseph's case he only has 2 tutors working with him, a lead, a consultant, and then a supervisor. The tutors are here every day and the others come only a few hours a month to check on things and to ensure the tutors are running the lessons correctly with Joseph. With all these different people and personalities it was bound another one would drive me bonkers and boy my expectations have not let me down. I love Cheryl, she is so great with Joseph and makes every lesson she tries to run with him like learning body parts FUN,  but Misty oh boy she just drives me and Joseph crazy. She is too by the book for us, she works with Joseph like he is a 5 year old and you can tell she is just trying way too hard and that just doesn't work for a 2 year old. Because of Joseph's age his ABA is more play based and less structured, this is one of the reasons I went with Capitol Autism was because I wanted him to receive services via playing. Not only that she is constantly trying to impress me like her singing which is not what she thinks it is, yes I have to listen to her sing when she is here on Monday and Friday evenings poor Jason gets a double whammy when she is here during the day. Guess that explains why he is always finding projects to do around that house that are not needed, I would too if I was home all day. Anyways, in the past few weeks whenever she is here I just feel this tension and I swear I have been trying because I know there are not many options out here as far as getting another tutor. So last night I opened the door with a huge smile and stayed positive and things were great but Joseph didn't want anything to do with her. I ended up doing everything last night, why in the world was she even here to watch me? When Cheryl is here Joseph just loves to go with her because as I said she makes everything fun for him. Well, I am not sure what happened but I had given Joseph a snack of some popcorn and he threw the popcorn so I picked it up and was working with him on not throwing his food and he was getting hysterical I mean really hysterical and kept looking at Misty screaming and it was the weirdest thing I swear. I ended up telling her we would be back and I took Joseph in his room to call him down my way taking him out of the environment and calmly whispering to him to get him out of the meltdown. As soon as we went back out the meltdown continued so I just took Joseph to his room to play and we played for about 40 minutes in there and we finally came out of his room and then Joseph was fine. I don't know what caused this huge meltdown I know for a fact it wasn't because of the popcorn because I did that frequently, he had his nap so it wasn't that. I will say this, he has never acted this way with Cheryl. So the night went on and Misty went on to talk to me about a meeting that took place outside our home about Joseph's case, this is a huge "no no". She should never speak to me about Joseph's case that is something that should only happen with me and either the lead, consultant or the supervisor. She kept talking and wouldn't let me get a word in at all and told me she knew what I wanted as a parent and what I was looking for in Joseph's response when I called his name and to not worry she told everyone else what a parent is looking for. Then she started talking about Halloween and asked if we were going out to houses and I said "yes" then her response was great "oh that is perfect then I can have the night off and will just make up the time on the weekend before then so let me know when I can come over on the weekend" First off she is not me so how dare she speak on my behalf and second is her title "Joseph's Mom" I think not, and I was actually looking forward to having them go on an outing with us and thought Halloween would be perfect opportunity to work on his outing skills. So no worries I called the one in charge and told her I am seconds away from calling it quits I will not have anyone speak for me I have my own voice and I will not tolerate someone else telling me what I want or expect. I also voiced my concerns and what I was wanting on Halloween and she agreed it would be a perfect opportunity for them to come with us. I told her I didn't want Misty coming with us anymore and if Cheryl can come great if not just forget about it. Also who is she to tell me she wants a day off, sounds a bit like that one tutor that is no longer on Joseph's case. Aye ya ya my life is never boring.

I am so sorry I just had to get that off my mind, I am really trying to stay positive for the most part but sometimes things happen that just set me off. So to leave on a positive note we have been working on Joseph imitating us, he now shakes his booty too cute, and does the hand movements for twinkle  twinkle little star so I have included some videos below so you can see for your own eyes as well as a video of how level 4 of PECS looks like. Tomorrow we are doing the Sacramento Autism Walk at Raley field with Capitol Autism, they are making us breakfast first and other families will be there so maybe that family on our street will be there too so could be a great opportunity for us. I am just looking forward to hopefully meeting other families and possible learn more about Autism and the world we have been living.

Jenn


Joseph's art work, this looks just like "Snoopy"

"PECS Level 4"

"Twinkle, Twinkle, Little Star" (I know I can't sing, so sorry)

"Shake the booty"

Joseph's EEG Results and Progress

Wow this past week went by so fast I couldn't believe it, must have been all the catch up I was playing at work. It was a good thing though because it kept my mind off of thinking of Joseph's test results from the EEG he had done the week prior for the most part. I ended up calling the neurologist office on Wednesday and his results showed NO Seizures!!!! You can imagine the relief and gratitude I felt. I just wanted to jump for joy.

When I had taken Joseph to the neurologist I had asked them to mail me a copy of the report from the visit to keep for my records. That also came in this week and was a bit shocked by some of the things he wrote that he didn't even discuss with me. He wrote in the report that Joseph was Autistic (we know this), shows OCD traits (didn't mention this when we were there), low tone in his mouth (we knew this) and low tone in his hips (he didn't mention this when we were there). There were some other things as well and called on the one person I can trust to either have the answer or find the answer we need, Joseph's speech therapist Monika. I explained to her when she came out Thursday what he said and showed her the report and she was shocked by some of this as well. In his report he also went on to say that Joseph is really good on puzzles and has an excellent memory and she agreed. She was a bit concerned with the low tone in his hips said her Mom is a Physical Therapist and she would ask her so I gave her the report to show her Mom. So most of this is off of memory, I know he had some other behaviour type of diagnosis there too but really is it that important? I guess I just take each specialists report and dissect it into tiny pieces on how I can help my son. On the other side I also don't want him mis-diagnosed or mis-labeled. Sometimes I feel like they are forgetting he is not only a person but my son and he has a name and it is not autism, OCD or what ever other diagnosis you want to give him his name is JOSEPH!!

OK I feel better and will try and stay positive here. I was reading my post from last week and noticed that one of my paragraphs got deleted somehow and it was a very important paragraph so I am going to try and redo it now though I know it won't be the same. My big brother Chris had come over last weekend to visit and of course seen Joseph as any normal Uncle does and as any Mom does was showing him all the things Joseph has learned, proud Momma moment. Later that evening I was talking on the phone with Chris about gaming systems as a matter of fact and he switched gears and was telling me how amazed he was with the progress Joseph has made in such a small amount of time. He went on to say that he was telling his wife about it and saying that is something you have to see with your own eyes amazing. Just this 5 minute conversation filled my heart with such love, joy, happiness, and pride too. I think all parents need to hear they are doing a great job with their kids and friends and family telling you how great of a job you are doing, but especially parents of Autistic children. Raising an autistic child is so much harder than you can imagine, literally it soaks up all my energy and the stress I am under is pretty extreme between work, therapy, bills, grocery shopping and having a teenager daughter too that needs equal attention and time. I am not complaining because I honestly can't say if given the opportunity I would change Joseph because then he wouldn't be the Joseph we all love and adore.

During this weeks ABA therapy Joseph has mastered (aka learned) where his Head, Tummy, Feet and now drum roll please Nose are. I am so excited, I know for many this is something your child does at a much younger age but I am sure you can share in our excitement thinking back to when your child did these things and your excitement. Another success this week is Joseph moved to the next level of PECS, Go Joseph. He is blowing this out of the water! So now he has a strip and places an icon that say "I want" and grabs the icon of what he wants such as his favorite "puzzle" rips the strip of the PECS book and brings it to say me or Jason and puts his hand on each icon as if he is reading it but instead I read it for him and say "I want Puzzle".  He does mess up from time to time, he brought me the strip yesterday that said "I want chase TV" I just had to laugh. At times he wants things that there is not an icon for so he will use another like "puzzle" I have gotten really good at reading his body and facial expressions to really understand what he is asking for. He is also babbling more and this weekend has said "Momma" like 5 times. I feel like we got "Momma" back again and hopefully it continues to stay because as I have said in the past it so hard not hearing that simple word. At night when I put Joseph to bed I tuck him in and lean over and kiss him and tell him the same thing every night "Love you and one day you will tell me you love me too back" I hope that day comes soon, very soon!!

Jenn

Touch your Nose

Someone had some yummy pizza

Touch your Head

"Shhhhh"

Vacation & Joseph's EEG Test

This past week was one crazy week for us. I took vacation Tuesday-Friday off work at first was for Jason and I to celebrate our 15th wedding anniversary but life had another plan for us. We had planned to rent a cabin for the weekend and get away at one of our favorite places to go, Lake Camanche. We have always loved going fishing and anywhere there is water, it is so peaceful and really helps you get a grip on reality and what life is all about-Our Family. Especially with Joseph's therapy schedule we really needed this. Well, some things happened at work and what I had originally planned for my vacation days was changed so we decided to cancel the idea of the trip to Lake Camanche instead I was going to look forward to some major relaxation and pretending I was a stay at home Mom at least for a few days.

The week before my vacation I had pulled up Joseph's report from the Mind Institute whom diagnosed him with Autism, mixed developmental delay, and Echolalia because I had remembered something about him needing to be referred to another specialist I just couldn't remember whom and why. So I figured it out and he was supposed to have a referral to a Neurologist to rule out any relation between his Autism and his reflux medication he was on as a baby, Reglan. (Read previous post for the details of that appointment). Long story short, Joseph's pediatrician never even put the referral through which to me is just a bit suspicious being that had there been a relation between Autism and Reglan he is the one whom prescribed that medication. I am so thankful to God that it came out to be no relation at all because I don't know how I could have lived with myself. I don't think I would have ever forgiven myself of that.

If you read my previous post you would know that the neurologist wanted Joseph to have an EEG to rule out what they call "Silent Seizures" it doesn't look like a seizure but just like a blank stare for a few moments then back to normal. The doctor thinks Joseph may be having them in the middle of the night or possibly during the day but we just are thinking it is him "spacing out" for a few moments. When talking about it with Joseph's speech therapist, Monika this week she told me it is so hard to tell if that is what is going on because some of the signs for "silent seizures" are the same for an autistic child. So on Thursday morning I got a call to schedule Joseph's EEG and they wanted us there in a few hours at 2pm. Funny how things work out because Joseph had therapy until 1pm and the drive to Roseville where the appointment was about 1 hour so we got there just in time.

Due to Joseph's age and lack of understanding they had to Papoose him which is a nice way of saying "Constrained" and he literally screamed and cried the entire time which was so hard for me. He repeatedly kept saying "All Done, All Done" it was literally breaking my heart. They had to place wires at certain places on his head and glue them and dry each one individually and they placed about 10-15 wires plus 2 heart monitors. I kept telling him he was such a good boy and was doing an great job over and over and he finally calmed down and said "I did good, I did good" in the saddest voice I ever heard come from him. But in all that I realized how in the world did he come up with those words, he has never said those 3 words, granted he heard me saying "you are doing good" but for him to turn it around and speak of himself I was amazed. So little Joseph for the next 24 hours had to wear the back pack on his back and carry around the device tracking his brain for seizures.

During all of these I was rushing between doctor office visits and therapy appointments I honestly felt like I was loosing my mind. Well I did because by the time Friday came around I completely had forgotten about our wedding anniversary, I had it all planned a girl from work was making us a red velvet cake (yummy) and I was going to do this special photo collage of us from our wedding and now and have the frame engraved. I spaced about picking up the cake and by the time I realized there was no way I could pick it up in between therapy appointments and going back to the hospital to get the EEG taken off of Joseph. Luckily I have the sweetest husband and he understood and his feelings were not hurt at all. So this week that is my goal to get that photo collage put together some how I will.

So that was pretty much our crazy week. We took a few hours yesterday with no cameras and only Jocie's phone and went to the river to just relax and spend time with Jason and the kids. It was so nice and Joseph did great. He loved picking up the rocks from the water and throwing them and didn't try and run in the water, it was like his sense of fear is starting to pick up which is great because he has always been fearless which is scary.

So all in all it was one "Hectic Week" to say the least. We have to wait 1 week for the test results of the EEG and Joseph's MRI is scheduled for next month. I am hoping the results are negative but am expecting the worst that way I won't be disappointed and I know that what ever cards we are dealt we will get through it one day at a time because I am a survivor of all things and I fight through what ever we are given and always come out on top. So maybe one day we will get back to what some people call a "normal life" but if not I am willing to accept our current life as our new "normal life".

Wishing everyone a fabulous week and just remember you can conquer anything as long as you put your mind to it and honestly what I do is pray, yes a simple prayer can go a long way. I don't pray for Joseph to be cured or for him to speak but I pray that I can obtain the knowledge I need to help him be successful and I pray for the therapists and tutors to have this same knowledge.

Knowledge is Power.

Jenn

"Tickle, Pickle"

"Gymnastics" (We went to a birthday party last weekend at a gymnastics studio)

Here are some pictures from the past week

Neurologist Visit

When Joseph was originally diagnosed with autism in May, the Mind Institute wanted him to be evaluated for any relation between the reflux medication he was on when he was a baby and his diagnosis of autism. I never got a phone call and well life got busy and I forgot about it until last week when I pulled the report from the Mind Institute out to see how he has progressed and remembered. So Joseph's pediatrician's office worked really hard and called me yesterday to get him in this morning with a pediatric neurologist. Honestly, I know the only reason he got in so quickly was because yet again I had to make a formal complaint to have my voice heard.

Joseph and I met with Dr. Khan this morning, and he ruled out any effects that the reflux medication, reglan may have had on Joseph being autistic. Huge relief. He went on to really explain autism to me in a way I have never heard before and it was like it finally all clicked with me. He said that it is like a person with OCD, anxiety, depression, shy, etc but much more severe that it takes them to the level of being labeled or diagnosed with autism. Autism he went on to say is not what is causing Joseph to be delayed, not give us eye contact, non verbal, and drooling it is the label it gets but what we need to do is really find the cause of his symptoms. He did concur that Joseph is autistic but he has some extreme characteristics that really Joseph should not be doing at his age, such as his drawings (see below). He said Joseph is doing some things at a 4 and 5 year old level WOW and other things at 12 months and this is what gives him the diagnosis of autism as well as mixed developmental delay and like 3 other diagnosis I am losing track.

While we talked Joseph sat in the chair next to me playing word games on my IPhone and the doctor said, I have been watching him while we talked and he has not gotten 1 word wrong. (he was matching letters) this is just not something that is typical of a 2 year old at all, he is extremely smart. He said he really doesn't understand what the letters are but has memorized where they go. It actually is funny because this is exactly what is happening with ABA therapy, he is excelling so much he started phase 3A of PECS yesterday and mastered it by last night and is ready for phase 3B. The tutors said they have never in all their years of experience since a child progress as fast as Joseph. You can tell him to match the 2 red blocks and matches them or any other color. Just for the record I would like to say that he must get his smarts from his Mom ha ha.

As well he noted that Joseph had been drooling the entire time we were there and that too is not typical and said he does not feel it has anything to do with Joseph's autism diagnosis but that he felt Joseph is having small seizures possible at night. He said they are the kind of seizures you physically won't see but that something is going on. So he is ordering an EEG which will be us going in to the office hooking up a bunch of wires to Joseph's head and going home for the night and trying to keep the wires on his head all night long, this will be fun.

Lastly he said that a child just doesn't get autism, something is triggering it in the brain to not fully function correctly like a birth defect and that he is going to order a MRI of Joseph's brain to figure it out but warned me he will have to be sedated for that part. I asked him what would be the benefit because I don't want Joseph turning into a guinea pig for nothing. He told me there is so much that can be seen beyond looking for cancer or a tumor, they can see how his brain works and is functioning and possibly a reason for all of this.

So all in all it was a good appointment but really was not ready at all for the possibility of him having seizures and am so worried about him. I wish I could take a magic wand and fix him and make him all better, needless to say my heart is breaking again.

Jenn


Here are some of Joseph's drawings at 2 1/2 years old:

This one is "caterpillar and snail"

 This one is called "Sissy"

 This one is self portrait "Joe Joe"