Autism, GI issues, Sleep issues, Speech issues, OT and then there is Michael

This month it has been 3 years since Michael has started therapies. In the last year we have seen so much growth in all his abilities! He is turning into a very goofy little dude! I love his facial expression and how he loves to interact with people. He has come a long way and there is so much to be thankful for. I have talked with a lot of other parents at A is for Apple and we have been so lucky in many different ways.

3 days old

3 1/2 years old

1. We have a wonderful pediatrician that listens to Ken and I and supports us in all of our concerns. She helped us get on W.I.C. when we could not pay for his special formula and our insurance would not pay for it. She put in referrals for both Kidango and S.A.R.C(San Andreas Regional Center).

2. Thank God for Kidango!!! They have helped us the most! We started working with Kidango in May of 2015 with a social-worker named Stacie. She helped me get Michael into Speech, OT, Feeding therapy and to get the Autism diagnosis. This past year they have started working with Kaylee to help her work through her emotions (anxiety) and all dealing with Michael. Ken and I are also taking a in-depth parenting course with them that I really like called Circle of Security. We are working with the same social worker that we had when Michael was a baby Stacie and I really like her and since Kaylee already knows her its a big plus.

3. We only have to go to one play for Speech, ABA, and OT and it is less than a mile from our house. So many of the families drive for 30 minutes to an hour to therapies for their kids and have to go through many companies to find the right fit.

4. Our ABA team is amazing! The techs we have 3 right now that work with Michael at different times. Tia is on Mon, Wed, Fri from 9am-noon and is at the Social skills center with Michael. Crystal is on Tues/Thur from 8am-10am at our house. Then lastly we have Maria on Tues/Thur from 3:30pm-5:30pm at the Social skills center. Our clinical director Brian listens to us and helps us guide Michael in the right direction.

5. Speech therapy has helped Michael so much. His current therapist is also helping with his drooling. Michael does a lot of scripting and echoing. We are working on social language and working on audio processing.

6. He got into preschool with our school district! This is an amazing thing because it is a special day class that helps him on social skills in the classroom to get him ready for TK! We also have a very good school district when it comes to special needs. He also got into summer school for the summer.

7. He is eating solid food so much better. He is eating so much more foods and will also try new foods! This is thanks to an amazing OT feeding therapist at Kaiser and her ideas and suggestions.

All of this has been a lot of work but has been so much help for Michael and the rest of us. I can not imagine what our lives would be like right now with out all of this help! Michael has come so far and I am so prod to be his mom. We still have a lot to work on but when I look back over the last few years I see how much has changed for the better.

Ken and I are also becoming stronger/healthier partners through all of this. It was really hard on us in the beginning after Michael was born for about 18 months then Ken and I went for a few counseling sessions and it help us and now with parenting course I feel like we are going to be able to support our kids in a healthy way.

Things that we are still working on :

1. GI issues. They poor kids tummy is crazy. No clue really as to what bugs it. pooping is hard for him and freaks him out. It may be a sensory thing as well not sure. It is just a daily issues that we deal with as needed.

2. Sleeping is hard for Michael. He sleep walks and wake a lot in the night.

3. Potty training

Work, Health, Family

Well I have decided to quit working at nights. It was really hard on Michael which made it even harder on me. My last day was this week. I am going to keep looking for a better fit for us. I am hoping to get in at the kids school for next year as an aid, cafeteria or yard-duty. I am also looking into privet duty home heath care aid. I have my license so that would work too. But we will see. For now it will be tight but okay.

Health stuff sucks. I have been dealing with it the best I can with 2 kids and a so on. I now have a Bartholin's cysts which is being removed and if you don't know where the Bartholin's glad is you are better off not knowing. Lets just say painful and not fun. I glad it is over. Just waiting for blood work to get back in a few days. I also started a new medication and I am hoping it will give me less side-affects than others that I have tried. I am tired all the time and I need to start walking or something but it is so hard to want to do stuff when you don't feel well. At first I was worried my depression was coming back and went back to see my psychiatrist but she thinks I am doing okay, actually much better than before. So we are not going to change anything but I am going to go back into therapy for 6 months or so until they get all my health stuff under control. I am also going to start doing yoga with Kaylee daily. I am hoping that it will help us both.

Ken really really likes Costco. He works really early morning either 3:00 am or 4:00 am but is home by 12:00 pm or 1:00 pm every day. It is so nice that he can help me with the kids in the afternoon and I also get some quiet time in the morning when everyone is gone. During that time I am slowly working on cleaning stuff out. I have been working on kitchen for a while now and then Michael's room and then our room. I am doing my best to get rid of junk or stuff we have not used in years. We have lived here almost 9 years!!

I am planning on have a yard sale in May and June to help cover our trip in June to Lego-land. I asked my in-laws to buy the kids passes for birthday gifts and they said yes! So that leaves just Ken and I that have to get passes.! We are renting a house with a second family so there will be a kitchen and we can make a lot of our own food. The kids are looking forward to the trip. Kaylee can hardly wait to go. I put it on her calendar and she is marking of the days. I am so happy that we can make this work. She is going to have a blast.

Michael has been doing really well behavior wise until this week. It was spring-break so Kaylee was home and both Payton and Isaac were here. He has been on high. He started biting again and his sleeping is really bad. But he is talking so much and I think starting to understand a lot more too. He still has a really hard time with question. He is okay with yes or no question most of the time. The problem is when you ask him a question that needs a answer: Are you going to preschool? what is your teachers name? Who is your best friend? Whats your favorite color? Whats your favorite show? the list goes on and on. His answer to questions he can not understand or answer is "poop butt"! Drives me nuts because people laugh at him when he says it.

Working

So about 4 weeks ago I started a new job. I studied and got my home health care license and started work. I love the work and it's only 12 hour a week. But ever since I started my anxiety has like tripled! Mostly because I am a worrier but it is also hard because I lives are already so busy and we can't afford child care so I have to work nights. I was also under the impression that I would have a set schedule but that does not seem to be the case. So with all of this change Michael has been in a really bad mood and never wants me to leave his sight. He is not eating solid food and is not sleeping well. He does not understand. Kaylee understands and really does not complain about it.
Each week I feel more and more guilty and stressed. I am holding my breath waiting for Michael to understand. Today I spent almost two hours going over are expenses and bills trying to figure out where we could cut things that we don't need. I really think that Ken and I live within our means and the only things that we should cut are maybe the trips and camping we do with the kids. But then I feel guilty  because Kaylee  looks forward to all the small little trips we go on . Is it wrong of me to want to stay Home and still work on stuff with Michael? Am I giving in to him if I quit?
I found out today that next week I am going to need a small out patient procedure on the 12th and I am stressing about that because they don't want to to lift or bend for a few days. I really wish I had parents and or that grandma was 15 years younger! I listen to friends and other people complain about their parents and to honest I am jealous. I wish that I had a mom or a dad to talk to about life issues or to advice from.
Anyways enough complaining I know being an adult is hard.

Its been a while

So much has happened in the last 5 months since I have blogged. So much has happened and I really don't know where to start. The last few months of last year were really hard emotionally and I am not sure why.

lets talk about the holidays first!
Holidays
Thanksgiving:
I had a really hard time with the holidays. I really could not get in to Thanksgiving and Christmas. Micheal started preschool the second week in November and that helped me by giving me a break from him at lease twice a week.
I hosted thanksgiving and it was nice having it here. But Michael reamed Great-grandma really hard when he was giving her a hug and gave her a blood nose. It did finally stop bleeding but it scared him. He stayed in his room the rest of the night. The food was really good.
Christmas:
Christmas and the month of December were kind of busy but a lot of fun. I help to bring Godly Play into the worship service and it was amazing. I have so many ideas on how to use Godly Play at church and in our home. I really do love it.
Kaylee getting hurt a lot: 
The week right before Christmas/winter break Kaylee and Michael and their cousins were playing outside at grandmas. Michael and Kaylee were playing on this car and he pushed her and she fell off the car she was sitting on and scraped the side of her head but it looked fine. She can in I looked at it she was not crying so she went right on playing. Monday she woke up fine and she went to school. Tuesday she woke up and said she was not feeling good. Then we saw her EYE and it was swollen shut almost and her fever was almost 102. We took her to the ER right away. Poor thing had scratched the inside of her eyelid and the white part of her eye and it was infected. She was put on antibiotics and everything was good. Then the week after Christmas Michael, Payton, Kaylee and I were playing Doctor in Kaylee's room. I was the patient they were the doctors. All was going well until I asked them to start warping it up to get ready to leave. Michael gets hyper when it is clean up time. Anyways make a long story short Michael was pulling on Payton and Kaylee was pulling back on Payton to get her away from Michael when he let go and Payton flew right at Kaylee and hit Kaylee right in the mouth. With in seconds there was blood everywhere I could not tell what was bleeding in her mouth. Thank God Ken was home. He called our next-door neighbor to come stay with the kids while we took Kaylee back to the ER. Once there they determined that she had bitten off a good piece of her inside lip and cheek. They were not able to stitch it so the put something on it to help stop the bleeding and she was given an antibiotics mouthwash to use until it healed! Then right after Winter break was over Michael and Kaylee were outside playing at grandmas  house again and some how Michael throw a very large and heavy rock on top of Kaylee's left hand. I heard he screaming all the way in the back bedroom of grandmas house and came running out. There was Kaylee standing and screaming in the entryway of grandmas house blood everywhere and she was so scared. (We have boo-boo towels at our house and grandmas house. They are dark colored hand towels that don't show the blood on them. More for Ken then the kids!) I grab our boo-boo towels and saw the bone sticking up just under her nail. Yuck. So I wrapped her hand as best I could and taped the towel around it and off we went to the ER again. We got there and they took us right in
slowly took off the towel and sent us right to x-ray. Kaylee was not happy about having to move her hand that much but they got the x-rays they wanted. We really did not have to wait that long for the  x-rays to get back but while we were waiting the gave pain meds, antibiotics and a new toy. The doctor came in and told us that her finger was broken. the first 2 joins were broken vertically. Then there were 3 more doctors in the room talking about what to do next to save the nail bed and how to stitch it! Out of the whole the shot to numb the finger/hand was the worst part. they removed the nail and stitched the nail bed and then glued the nail back under the skin to help the new nail grow back in. It looked nasty and hurt for the next 2 days really badly. She is doing much better now her finger will always look a little different shaped but the nail is growing back!
Christmas Eve: The day was great. The kids had a fun day playing and just hanging out. we went to church in the morning and then around 1:30pm we went to Jean and Sally's for an early dinner. Sally seemed really tired and quiet but still had a good time. We stayed for a few hours and then went home to get ready for church at 10:00pm. At church I found out that Sally had fallen out of her chair right after we left. So after church Janet, Phil, Steve and I went to the hospital to see Jean and Sally.
Christmas Day:

The kids slept in! (Kaylee went to her 1st late candle light service on Chrsitmas eve). When they got up the open gift and play with their stuff for quiet awhile then we got dress and went to Bud an Joann'a house and open gifts with them. Michael had a hard time understanding that everyone opened there own gifts so he helped me a lot. Bud keep yelling at him and I did my best to keep my mouth shut and it was so so hard not to tell him to shut the hell up and give the kid a break he is 3! Anyways Kaylee got a doll house (a huge doll house) and Michael got a new lawn mower which turned out to be their new favorite toys.  after that we left and went to grandmas how and made some appetizers to take to My aunt Pam's house. I was really worried about Michael because she has a dog and Michael is scared of them. But it worked out great because the kids got to play outside and Michael loves that. Then we went back to Bud and Joann's house for dinner. I was not happy about this because they (Bud) does not let the kids do anything. Their house is not kid friendly and they don't want the kids to run around, the kids can't play in the backyard because of the pool and lastly Bud cares more about his dog Rusty than his own grand-kids. As I said before Michael is scared of dogs and will not even go in their house if he hears him walking or barking! We had dinner and it was good then the kids (Kaylee and Michael were the only ones) got to open gifts from Ken's family members. All in all Christmas went okay. It is just so stressful and a lot of running around but the kids did extremely well.

Now lets talk about kids:
Michael:
He started Special Ed preschool at Anderson right behind our house in November and then started at the Social Skills Center at A is for apple right down the street from our house. He goes to preschool 2 days a week and the social skills center 3 days a week. His speech has improved so much it is amazing. He is talking so clear most of the time. His social language is still behind but improving. He get speech at a is for apple one day a week after the social skills center. He and Kaylee are the same size now. Which blows my mind since he never hardly eats anything. We are really trying to work on eating and using the potty. He still has really bad sleep at night and wakes up a lot. I have done so much reading the last few months on Potty training, eating and sleeping for special needs children that I am not sure where to start first and with what. I feel like he has kinda hit a plateau for right now with things and I think that is okay. He has learned so much in the last 6 to 8 months he needs to process it all.
Kaylee:
Well I wrote about Kaylee and getting hurt so much over winter break already but I did not write about the CPS being called and showing up at our house 2 days after she broke her finger. I did not know what to say or do. I called Michael's old social worker from KiDango Stacie and she got back to me right away and told me what to do and how to request for her to work with us and with in 2 weeks she was doing an assessment on both kids. Once that started CPS closed our case. Currently Stacie is finishing their reports and will be over here some time next week to talk to me. They are going to provide emotional therapy for Kaylee and talk with her about Michael and support us in helping her learn what gets Michael over stimulated. It will be nice for her to have some one on one time since she sees Michael getting it on a Daily bases.

Michael starts preschool

I am freaking out. Tomorrow is Michael's first day of preschool and I am a ball of nerves. I am trying to be positive but I can not relax. I know how Michael is with new stuff and I have no idea how bad it is going to be but it is going to be bad/hard and I just am on edge about it. I have talked to him about it all weekend and even today. We have read books about starting preschool and he response to me is "Go Home". So I have no idea if he understands what I am saying or not. I tried to warn them of all his behaviors and that he bites and throws everything but I am not so sure they really understand as they have never seen his true colors as of yet. I just don't want any of the other kids getting hurt because of him.  Kaylee's fist day of preschool was so simple and I did not even give it a second thought. We dropped her off at the door she walked right in and never looked back! I am sure that wont happen with Michael tomorrow. I think it will be a problem to even get him in the door and I am sure he will scream for the whole 3 hours at school. But they are trained to handle this and they all know ABA so lets hope by summer time he will be wanting to go to school all the time.

What to do for Michael's birthday and a little more. (FYI I am venting about family)

Over the last 3 or 4 weeks I've been trying to figure out what to do for Michael's birthday.
There was a family incident a few days before Kaylee's birthday in August and I ended up canceling her tea party that was just for family and still kept her kid birthday party at the park. Kaylee was fine with that and had a wonderful time at her park party.

But this incident has been weighing on my heart and mind. It triggered something inside me that I never expected. I have been having some really BAD dreams/nightmares about my past. It also did not help that it also happen when I was going to the grief group at church which had already triggered things for me. I really wish I understood the human brain. I have not had dreams like these in years I think it has been almost 13 years. Since they have been this bad. Strange who words can trigger so much. They are almost worse than being physically attack and this is what I am trying to protect my kids from and I am at a loss on how to implement healthy boundaries and keep everyone safe. I know that I still hold on to so many of those words and names that I was attacked with over my childhood and even adulthood. I will never forget them. I have learned that they do not define me but sometimes it is hard to remember that though. My parents called me stupid and bad starting at a really young age, I had a cousin who called me an incompetent human-being for must of my grade-school and middle school years and no one stood up and told them to stop or took the time to tell me that it was not true. A family member blamed me and said that caused my Grandfathers death because I caused him to much stress, My mom called me a selfish person for most of my adult life even in-front of family and friend and no one told her to stop or told me she was wrong. I have gone to therapy for years trying to get these words and beliefs out of my head. These are the ones that I feel comfortable about writing you should hear the stuff that I can't even write about. I don't want my kids to have to deal with this. Words hurt and stick with you for ever even if you tell yourself it is not true and there is no reason for my KIDS to ever have to go through this. It broke my heart into pieces when I had to explain to Kaylee what SELFISH meant! and it killed me even more that I did not stick up for her when the work attack was happening. I felt like I failed as a mother for the first time. I have had to do a lot of processing and thinking. The good thing is that since this incident happened I've learned that we have so many people that we're not related to by blood that are family to us. And I treasure every single one of them that have included my children into their lives, and even Ken and I. My kids are so so lucky. Grandma is 93 and wont be around forever. I kept think that she is the last then it will only be Lewis and I. But I have realized that I have been lucky enough to have start to grow a family out of friendships and love. I see that now and it gives my heart a little peace. 

So back to Michael's Party am I ready to set these boundaries and follow through with how and what are okay behaviors to put up with? I have no idea what to do and this is really bugging me.I am struggling to come up with something for Michael. I feel he deserves a party because he has come so far this past year and I believe that this would be the first party he'd understand what was going on and what it was for. I also want it to be a fun happy day for him as well. He has improved so much in talking it is impossible not to celebrate that. I hope I can come up with something simple and meaningful. 

I'm torn on what to do. The one thing that I've learned over the past few months is that just because someone's family does not mean that you forgive them and go on with them in your lives. You can tell a family member to stay away and have healthy boundaries if they're never going to change and hurt you.  

Grief support group week 2 and 3 and updates on the family.

Sophie:

So I have been going back to the grief support group and proud of myself for doing so. It has been a little over whelming but also has brought me some relief as well. This is the first time that I have ever been in a support group with people that I know and also know my family and at first I was not sure if I should be a part of the group because of that but I have stuck it out and have shared things that I have only ever told my therapist and that part of share things to people I know has been the hardest but also the most liberating thing I have ever done. The group has been extremely supportive and have been patient with how hard this is on me and the fact that I am not good at explaining my emotions at all. It has brought up some emotions and I know that I have been extra short with Ken because talking about this always makes me edgy. But he never complains just checks in with me every now and then. Next week we focus on Spirituality and I know right now that this one is going to be a hard one on me.

The group has also mad me realize how much anger and hurt I still have towards my family and even my parents even though they are dead. My whole life I told myself I am so lucky because it could have been a lot worse but I am slowly learning that it a way I avoid having to deal with or even think about what happened. My mom played a victim and the poor me rule as long as I can remember and I never wanted to do that. I never wanted any attention. I still have a hard time with that. I am also realizing at how much I miss them. I am not sure if it is them that I miss or the fact that I missed having any parents at all. I have always just taken care of anything that I need to do no problem I just did it but now at the age of 35 I wish I had a parent to call on. I am learning that a child's relationship with a parent or caregiver in really important and do to my situation growing up neither Lewis or I have someone we can call on, we have no safety net other than each other and that is not the same and what is even harder is that I feel we are both going through a hard time in life and we can't even give support to each other. I guess that is when we turn everything over to God and have faith! God's grace is amazing and I feel it daily and thankful that it is there but still my heart is telling me one thing and head is running a non stop script in my head about the other stuff. I guess that is why this whole month has been a hard one emotionally. I have felt really sad and lonely yet I am so happy to be around Ken and the kids. With Michael's therapies I don't get out of the house as much as I want. I have also tried to get in contact with a few friends with no luck. So I guess it all adds up and my brain wont shut off.

This week I had a lot of kids in my house and I loved it. With it being the first week of school a lot of kids only go half days and get out between 12:00pm and 1:00pm. At one point each day I had 7 to 8 kids in my house all the same age! I LOVED IT!! I always wanted to have a lot of kids but that is not happening now so it was nice to have it while it lasted! I was tired and in bed at 8:30 every night but it was so much fun and I loved hearing all the laughing, playing and yes even the fighting was cute. But it was a lot for Michael and it has had a few side-affects on his sleep. Up at least 3 times a night and really grumpy and clingy to me during the day. So maybe it is good that we can not have anymore kids! I can still dream about what it would have been like though and I would have loved it. Michael would have adjusted over time! (I am not sure Ken would though) LOL

I am excited about Labor Day because we will have people over and do a BBQ and the kids can play in the water. I try to have something that I can look forward too. I need to get better about planning one thing very week so I have things to look forward

Kaylee:

Kaylee started Kindergarten and is loving it! Her teacher is amazing which is good. It is so hard for me to think of her as a kindergartner! School has only been in for a week but so far she can't wait to get there and always wants to leave early! We had back to school night and got some more info which helped us understand how they do things. 

Kaylee also lost her first tooth on Wednesday! I could not believe that it fell out. But she was so happy plus the tooth fairy came in the middle of the night!! Michael keeps asking about his teeth. I guess he wants to loss his tooth just like his big sister. She has a dentist appointment on August 31st and she can't wait to show them! 

Kaylee's Birthday is on Tuesday and she will be 5 years old!! She can't wait. I have had a hard time getting a party together for her. For some reason I am just having a hard time this year. Plus last Sunday my Aunt said some pretty hurtful things to Kaylee and I! I am still trying to process it all and figure out how to handle it all. My heart is full of sadness for Kaylee as she does not understand all the stuff that goes on in a family she just loves everyone endlessly. But this time it affected her greatly. So possessing time is needed for me to decide on what to do next. I canceled a tea party that I was going to have for the adults in her life because of all of this so to make up for that we are going to take Kaylee to her FAVORITE restaurant on her birthday!

Michael:

Michael's behaviors have gotten a lot more intense the past month and it is stressing me out a little. We meet with his ABA team and they have noticed it as well. I asked if it could be his age and some of it is probably age but most of it is sensory and  him getting overly stimulated and not knowing how to tell us or dealing with it himself. He is only 2 almost 3. He has about 3 to 4 melt downs a day and they last anywhere from 5 to 45 minutes a few have lasted hours! On top of that he has the usual temper tantrums that very 3 year old has. It is just so tiring. I need a break from him.

On the plus side Michael language is improving DAILY! He is talking clear and using more and more words. I am so thankful that communication is possible now. He also has a visual schedule that we use and that seems to help a lot with transitions. The one thing I am not good at but need to improve is prep him for things. I mean start about 30 minutes before we leave the house or get Kaylee from school. I need to tell him details of what the process will be. Example: "Michael we are going to get Kaylee from School. You will be in the stroller." (because he thinks that he gets to WALK) "so we are going to get our shoes on in 5 minutes!" And do this a few time so he knows the transition process. I have learned that some of his melt downs come from frustration of not understanding what is happening or what is expected of him. So I do my best to prep and explain both visually and verbally.

Ken:

Ken has been at Costco a year September 1st! He loves it. They asked him about being supervisor and I think he wants the position but we will see. I just happy that he loves his job and has a set schedule every week. The raises are good the personal time is great and he loves how he is treated. It is been so nice to see him happy with work. We also get to see each other a lot more too!