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"