Already July....

This year is going by quickly.  G hasn't been doing as well as I'd like her to do in school.  I'm hoping to get some new things set up so she can practice reading and writing a bit more.  Hoping her teacher is also much better than what she had last year.  We also switched daycares.  It became apparent that no matter the circumstances, my daughter would be written up.  They would automatically take another child at it's word without talking to my daughter.  So we are now in another daycare and they let RBT's into the facility.  However, we just had an incident and my daughter along with another girl, bullied a child with special needs.  They were both involved but only my daughter was moved to another room.  Again, she's being singled out as the troublemaker.  It makes my heart sad.  But the BCBA is having a meeting with the staff and was going to ask some questions about that.  In addition, I've been explaining over and over how some conversations are inappropriate and that's what got her in trouble.  She basically asked the little girl if she knows what gay means and the other girl asked her if she knows what special needs means.  I've reached out to her therapist for some assistance.  Social stories that can help her understand what she did was wrong.  It's hard to punish someone that doesn't understand what she did.  I think that's what's most frustrating of all.  Her lack of understanding.

Lifestyle changes....

 So with the husband back to work, we changed our insurance.  I started on a new journey as a result.  His company offers a weight loss program designed to help you change the way you live your life.  It's a long term program over a full year.  For the 1st 6 months, we have weekly coaching.  Then it's once a month.  So far so good with the effort I'm putting in.  I'm tracking food, walking on my treadmill daily so far and I'm seeing results.  I've had a lot of physical issues recently and I'm hoping this will help.  My hands have been swollen and now I have trigger finger in my index finger on my left hand.  It won't go away without treatment so waiting on my appointment.  But I can tell the swelling has gone down.  I can close my hands easily, except for that index finger.  Also, I've had pain on my right foot.  It's not as bad anymore so again, wondering if it's my weight.  My weight has been it's highest ever.  We all had the flu so I got a jumpstart on losing but now it's all in my hands to keep it going.  My blood tests show that I have very high triglycerides and cholesterol.  Another reason to start managing what I eat.  No more heavy cream dinners.  More healthy lunches and reducing the amount of butter I use.  Everything needs to be in moderation but I lost that.  Now I'm getting back to the basics.  My end goal is to lose 23 pounds.  I can do it.  I just need to be committed.  

Broken trust....

 Yesterday we had a visitor.  Someone reported us to DCSF.  The report said J berates me, that J lost his temper and G was in the trunk.  It said she wasn't sure if J shoved her in there and drove that way or she went in herself.  I can say without a doubt that my daughter unbuckled her seatbelt in the driveway and jumped over the seat to the back.  We have an SUV.  He'd never drive with her like that.  This was from an RBT that comes into our home to help us with G.  To help her figure out how to manage her big feelings in a productive way.  To help her learn how to talk to people and learn how to be a friend.  How can I trust them again.  I'm not sure who filed the report but I have a guess.  When J came home from a trip, G wanted to go with him to pick up Taco Bell.  She wasn't behaving the best so the RBT said she shouldn't go and we all agreed.  G became violent with her and has been mad at her ever since.  That's G.  She holds a grudge.  She will hit, kick and do whatever it takes to make the person go away.  I remember her mentioning G's aggression and the report says she believes it's learned from someone in the house.  Interesting though.  I had to pick her up from daycare so the investigator could talk to her.  When we got home, G was having none of it  She jumped over the seat and hid in the trunk (SUV).  So she saw first hand.  She talked to me for a while and asked if she could talk to the pediatrician and a character reference.  I gave her permission and a phone number to my SIL.  I also gave her Jim's number.  She said it takes 30 days for the case to close but it should be done.  She said she'll let me know.  I called the director and she was unaware of all of this.  She also said the RBT should have come to her before doing this.  If she finds out who it was, she won't be coming back into our home.  Again, how can I trust them again.  

Finally....

After 3 long years, selling out house and moving south, two additional moves (and still will have another in the future, but not yet), having our daughter go through Kindergarten, First Grade and now Second Grade, J is officially well enough to go back to work.  COVID nearly killed him.  It's taken a heart ablation, surgery to repair the phrenic nerve that controls his diaphragm and PT to get his pulmonary function test normal.  He had a PFT of 47 and now is perfectly normal which amazed the Mayo Clinic.  Another month, we'd be moving to another house and declaring bankruptcy.  I thank God every day for his life.  

So the school year begins and some things end...

It's been a hard end of summer.  A few weeks ago our cat, Amelia, passed away.  She was over 20 years old and I know she lived a great life with lots of love.  The hardest part of this is my little girl.  She was devastated.  J was away and it happened so quickly.  She stopped eating Tuesday night and Wednesday in the middle of the night she became so weak she couldn't make it to her litter box.  I told G in the morning to say goodbye because she probably wouldn't be with us.  She just walked downstairs and didn't say anything and went into her tent.  A minute later she came out hysterical.  She wanted to go with me to the vet to say goodbye.  I knew it wouldn't be a good idea with me on my own.  I reached out to the ABA therapist and she said she'd come by and we could all go together.  I had an appointment at 3pm.  I wasn't sure Amelia would make it till 3 but I didn't have a choice.  She slept by her water dish, then I moved her to her bed.  She stayed there sleeping till I had to pick her up.  She was so close to dying in my arms.  I kept my cool and got her in her carrier.  She didn't pick up her head or struggle.  She made gurgling noises but remained alive.  I didn't say anything in the car.  I just drove to the vet.  The Dr said her heartbeat was really slow and asked me if I wanted them to give her a shot to help her go to sleep.  G was inconsolable and I was having a hard time controlling my emotions as well.  The Vets office let us stay there as long as we needed.  I needed G to calm down and I needed to stop crying as well.  This was the hardest thing I ever had to do.  

After this event, we moved on to J coming home and attending G's orientation with her teacher.  After that, G didn't sleep Wed or Thurs night with the anticipation of the first day of school coming.  After getting 2 write ups at daycare in one day, I was ready for school to begin and a new routine to start.  

It's been a full week and so far she's doing well.  Her teacher said she's a great student.  She had her first gymnastics class on Saturday and she did amazing.   We also went to the pool and we invited her friend and mom to come along.  It was all going well till the floated popped.  Then she cried her eyes out.  Then I said it was time to go and she through a tantrum. A really big tantrum.  Screaming, crying, carrying on the entire time to the car and home.  I'm trying to give her some grace with school starting and everything.  I know she doesn't do well with change.  Also, she had a change in meds so I can see that being an issue.  Sunday went better when we went to the pool.  I warned her if she had another episode we won't be going next weekend.  

Anyway, her new issue is her disrespect to me.  She calls me stupid and dumb.  Says she hates me, etc.. This has been happening all weekend.  It's not very nice and I'll be bringing it up with the ABA therapists on our call today.  I'm tired of being the bad guy.  Always on her back to do something.  Sometimes I'd like J to be that guy sometimes.  

ABA therapy and strange viruses...

 So we've begun intense ABA therapy daily and even all day on Saturday's.  G goes back and forth with bad behavior depending on who is here.  She doesn't like it when she feels like someone is ruining her fun but she's really showing poor judgement.  It's not ok to just walk out the door without asking us first.  It's not ok to climb over the couch instead of walking around it.  It's not ok to just go through the pantry or fridge and just take whatever you feel like.  They are trying to correct her and she doesn't like it. Last night was Friday and we stayed in instead of going out.  She was hungry and not acting ok in the car.  J was going to see if she was doing well, we can go out but as soon as she started throwing things, he said no way now.  Anyway, she was very hungry and tired.  She wound up falling asleep next to the cat in my office.  The ABA therapist sat with her.  Next thing she hears is the snoring.  Overall, she did ok with sleeping even though she had napped for at least an hour.  

J on the other hand has himself stressed to the max.  Someone says a possible diagnosis and now he's in a tailspin of depression, yelling at me, etc.  I can't say a word without getting snapped at.  It's a lot to deal with these days.  I'm sort of done with it all.  I'm ready for him to die and me figure out how to dig ourselves out of the financial mess we're in without him around.  I mean he's convinced his life is over then maybe I need to accept that and just prepare for it.  I try supporting him but unless I totally agree with him dying, I get yelled at.  I'm so sick of it all.  I live on eggshells in my own house when I'm around him.  He stays upstairs all morning/afternoon and I don't see him unless he comes downstairs for lunch when I'm eating.  He doesn't help me around the house, no cleaning up anything.  It's all on me to do.  I work all day and in-between, I try and clean something up.  It's the best I can do right now.  I take care of the bills, cook dinner, clean up after dinner, take care of getting G dressed for the day, undressed for the night, brushing her teeth, washing her face, brushing her hair, washing her up, taking her to fun places to have fun, etc.  

JUST EXHAUSTED AND READY TO CALL IT QUITS ON LIFE.  

Did I say that loud enough?

How do I survive this...

G seems so unhappy these days.  I think she is becoming more aware of the meds and says she doesn't like them and doesn't like how she feels.  She keeps blaming me for making her feel that way.  I'm at a loss.  She's always saying why does she have to go to school when her friend doesn't.  (I really don't know what her friends family does and if they do or don't let their daughter stay home more than G.  She is in Kindergarten and G is in 1st Grade).  She wants to have a little sister and blames that on me too.  I wanted her to have a sibling but J didn't want to move forward.  He wanted so much for my age to be an issue and was so upset the Dr gave me the go ahead to try again.  Reality is, he didn't want another child and I'm being blamed by her for not having another.  I'm trying not to take it personally but it's hard when your child blames everything on you at such a young age.  She's not grateful for anything she has and I don't know how to get it through to her about that. With our trip to school today, I came home feeling lost and sad.  I don't know how to feel happy anymore.  

Assessment #2

So, tomorrow we have someone coming to our home to do an assessment.  We did this with another company but we are still waiting for services.  But they have charged us $200 for doing the assessment.  That is our co-pay.  And we haven't even started therapy.  I'm hoping these people will be much quicker and hopefully start sooner rather than later.  I'm tired of waiting lists and not getting the help we need.  G seems to be in charge or we have meltdown after meltdown.  I can't take it anymore.  Last night, she came in our room and into bed.  I need a wash cloth, I need tissues.  Dirty tissues all over the bed and wet cloth on the sheets.  I slept in the guest room.  Tonight we need to keep her in her own bed.  I need sleep.  How do I get her to stay in her room.  Always, saying she scared of something lately.  I had a bad dream, etc, etc.  I need suggestions on how to keep her in her own room at night.

We all have strep...

 So J was sick last week.  But in man fashion, he didn't go to the doctor.  Yesterday, I started feeling very ill.  Fever, sore throat, chills.  G threw up in her bed, then later in ours, then after drinking some water, after the doctor did the strep test.  So much fun.  After her Dr app, we went to my Dr app and J checked into the urgent care next my doctor office.  Now we are all on antibiotics for the next 10 days.   And I've spent the better part of the day, washing/sterilizing all our bedding.  

Hopefully we start to feel better tomorrow. :(

No outlets

So apparently, I'm the one that has to take all the crap in this house.  Everyone is falling apart and I have to deal with it.  J just gets angry and makes it worse.  I'm tired.  All I see is him checking vitals over and over.  As if his life depends on it.  Our daughter is going to grow up seeing this and be affected by this.  I'm scared she'll be thinking it's normal to do this all the time.  I understand having tools available is nice but if he doesn't get a number he likes, he goes back on the treadmill.  He comes off shakey and has lost a lot of weight.  This is not normal behavior.  And I'm supposed to just take it.  I go upstairs to get some peace and he starts banging and yelling because the number on the machine isn't what he wants.  He does it again and again and again and same result.  I walk out frustrated and with anxiety because I have to get it from him and her and I'm just on edge all the time.  I can't get it out of my system.  Only him and her get to express themselves and I'm just supposed to sit there and take it.  This isn't the way I want to live the rest of my life.  If this is how it's going to be, I hope for it to be over soon. Maybe I should just stop going to my doctors, let my diabetes go out of control, get sick so I can maybe get a break.  I don't like thinking like that.  I'm trying hard to lose weight and lower my cholesterol so I don't need to take more meds.  But the garbage in this house is exhausting.  

Drained...

It's been a long week.  We made it through.  It was hard.  J is back home and Giuli is happier than ever.  I'm still trying to work on getting Giuli to listen to me.  Sometimes she just ignores me and does what she wants.  Yesterday, the daycare tried to help me by saying to her she needs to apologize for what she did. Sadly, she doesn't always seem to understand her actions.  And of course, lots of loud noises and crying on the way home as a result.  I wish I had the knowledge to fix what's going on inside of her.  We're still trying to find ABA care for her.  Just sitting on the waitlist and waiting for another to provide us with the assessment they did.  Everything takes so long to get done.  I'm glad her school started doing extra with her.  She goes to something called Lunch Bunch.  I think she likes it too.  Yesterday, she got 2 tokens so I told her if she can do that every day, I'll give her a matching dollar.  She wants to go to Target and she needs money for that.  Hoping a goal like that will give her incentive to do well in school. 

Does my daughter hate me?

I feel like I’m losing my girl to Autism.  I doubt myself more than ever these days. I take care of her.  Feed her. Help her get dressed, wash face and brush teeth.I help her brush her hair.  I take her to parks and try to set up play dates with other kids.  But all she says is go away.  I only want daddy.  Not just once but all the time.  No matter what I do with her she just wants me to go away.  The last few days have been hard.  I’m feeling emotional about it and have shed some tears.  I’m trying to figure out why she hates me so. Am I doing too much?  My heart breaks when she pushes me away when I know she’s hurting. Is this part of her autism? It seems that a year ago she went to the Daddy/Daughter dance and she was happy.  Yesterday, she wasn’t happy.  Was she having anxiety?  Not even sure since she doesn’t communicate with us.  Hopefully we can get help soon before we lose her forever to Autism.

Before they left for the dance.  No smiles 

During the dance when she saw her best friend was there

Little in rare form yesterday...

So we are in waiting mode for therapy for G.  I feel like we get the runaround a lot these days.  Last night was so hard. Something doesn't connect in her brain.  I told her we need to leave so she can get her pizza for dinner while she plays.  She just sat there playing on her tablet.  Nothing.  Last time she didn't get to eat there she had a meltdown in the parking lot.  Laying on the ground.  I wanted to avoid that happening again and explained but she doesn't get it.  Still has no concept of time.  We need help figuring out how to parent her.  Then last night before bed she wanted to have some Fanta.  Dad says yes so I go with it.  She now is trying to pretent to pour from an open bottle into her dolls mouth.  I tell her to stop, she'll spill, but doesn't listen so I try to stop her. Then it spills and she says its my fault.  Of course she takes no responsibility when I said not to do that.  Because she thinks she can do whatever she wants and the reality is she can't.  She touches peoples belongings and goes into their bags. No understanding or remorse.  When someone took something from her bag she didn't like it.  She was upset but she can't turn it around to understand that she can't do that either.  We are challenged.  Praying for a good day today.  Hoping to take her for her swim lesson and maybe we can go skating.  Something different to do.

Tired of being worried all the time...

Yes, I worry a lot these days.  Money is the big issue.  Will we make it till J gets back to work?  I don't know anymore.  I want to see if we can skip any payments but J keeps saying they'll cut us off on credit.  Well, let's be real, when we don't pay and our accounts are overdrawn, then what, they'll just ignore the missing payments and let us use our open credit.  NOT.  But what do I know.  I'm just a full time employee and mom of a seven year old and have struggled for years to pay down our debt only to wind up in the same situation.  I've cashed in all the savings, investments and 401K money I can scrounge up to pay.  It's not looking pretty anymore.  I worry that when J goes back to work, he'll just spend like even more as if we don't have debt to pay back.  It has to stop.  At this point, I'll be working till I die.  

My other worry is my daughter.  J has ideas on giving money rewards and I want to change that.  I suggested it and he said he agreed, then a couple of weeks later he said he wants to give her money rewards.  I think she should have an allowance.  No strings attached allowance.  Good behavior shouldn't be rewarded with cash.  She just needs to have good behavior.  

That's my rant of the day.  Thanks for listening.

Praying for change in 2024

2023 was a hard year.  We had G evaluated and found out she has Level 1 Autism.  A lot makes sense now but still dealing with her being so difficult with lots of big emotions and no way to handle it.  Hoping for help from Autism Learning Centers but we'll see.  I'm not impressed with the speed they want you to take but not them.  We've called and had our paperwork done and now waiting again till they are ready to call us.  This started at the end of November so you can see why I'm frustrated.  And right now, I'm ready to go out with G for the afternoon but she's just whining.  I can't do this or that.  I can't brush my teeth, I can't walk, I can only whine very loudly.  I love my girl but this part of her is hard.  She doesn't say what's wrong.  Just gets mad and actsw out.  Doesn't say something happened or what's making her upset even if she knows why.  ON PAUSE

I'm back.  She's now having hot cocoa and watching her tablet.  She's still a mess but happier.  I on the other hand have fear and worry in the next month.  I don't know how I'll pay our bills.  I just don't know anymore.  Jim keeps saying wait.  Always has regret about something.  I should have done this instead of that.  I should have done that instead of this.  Never happy with decisions.  My bank accounts have been drained and I'm thinking I need to get a part time job.  He won't do it.  I'm the one who will have to work and work and work and take care of G and clean the house and run around while he takes care of himself.  I've never seen anyone in my life procrastinate as much as he does.  I'm stressed about this, about that, etc.  I'm just so fed up with it all.  And super tired today.  Low energy.  

Maybe, just maybe, I need to take care of myself for once.  

HAPPY 2024.  PRAYING FOR PEACE, LOVE AND ACCEPTANCE

Healthcare and meds...

So, G had some crazy looking marks on her leg.  Possibly bug bites but I wanted to have it looked at since it was so many and so round. I was lucky to get an app the next day in the morning with her doctor.  We decided that since it was the Dr and not the NP we would ask the her questions about coming off the meds. When J mentioned it the nurse who checked us in she looked pissed off and was very combative.  I don't know why.  I'm not sure what she gained from acting like that.  She didn't want us to talk to the Dr about it because we have an app in Sept to review it.  But why was is it that she was so freaking angry about it.  If it was the NP, we would have just had her look at G's leg and we'd be done.  Anyway, we got a prescription to start her coming off the meds. We started on Saturday and by Sunday, we had a change of heart and gave her the extra dose.  Sunday and Monday were ugly days for G.  No self control at all.  I was terrified for her and anyone she would come in contact with.  She wasn't being bad.  Just so wild.  Anyway, she had an incident at school so we are now waiting to get with the pyschiatrist and we'll assess whats needed then.  So much for taking her off meds we didn't think worked anyway.  

Challenges...

I feel like I'm drowning in responsibilties. I get up at 6:30pm to get ready.  Then get G up to get ready.  We've started picking out clothes the night before to alleviate the struggle in the morning.  It seems to be working for now.  Then get her breakfast, put her bag together, get her meds together, pack her snack and water.  After that, we go back upstairs to brush teeth and wash face.  In between with her running to J to say hello and not do what she's supposed to do.  Finally all of are in the car and we drop her off.  Then, I get home, make my breakfast and coffee and work.  I do some side hustle and get my act together for my day job.  Now, I'm reminding J to do things, throwing in load of laundry, again reminding J to do things, working, figuring out dinner, keeping the kitchen clean, possibly pulling out the vaccum and going back to work, etc.  Now we are trying to get G off the current meds but it's all such a mess.  According to the doctor's office ,she should have been monitored every 3 months by the prescriber which we weren't aware of.  Anyway, just not happy these days with healthcare.  

Updates on our lives...

So we had a crazy July.  We took our little one to VA to stay with Grandma and Grandpa.  And J and I drove to NJ to have his surgery done.  It was really crazy, stressful, and exhausting. Hotel living and surgery don't mix well as well as travelling as much as we did.  G was not happy to be at Grandma and Grandpa's house.  She did get to meet her cousins in person.  They are her second cousins but they are her age.  She had the best time with them.  We had an extra 2 days in VA before we traveled home.  I spent as much time with G as I could.  We went to Surge and she had a great time climbing and jumping all afternoon.  She even got to have desert for lunch.  Not my idea but aparently there are no food options except for the pancake desert place in the mall.  So for dinner we had pizza and then she got to go play in the pool and her Aunt and Uncle's house. The next day was travel back home day.  Longest drive ever.  8 hours plus a car wreck that took over an hour to clear up just 500 feet away from us.  But we made it home and tried to get G under control.  Monday was orientation day with her teacher and Wednesday she started 1st grade.  We went to her therapist app as her behavior has been deteriorating lately.  Maybe it's all the traveling. Or J not being well.  Or just starting 1st grade.  Who knows.  She has good days and bad days.  The therapist is going to have a psychiatrist contact us to get her started with another medication.  In the meantime we have to wean her off of the current medication.  It's not really helping so better to get her off of it.  That's where we are right now.  I'm doing all the work.  Working full time, taking care of G, cooking, laundry, shopping, etc.  I have been looking into preparing and having ready meals ready to make.  Some will be in a jar that can cook with just water.  Others will be in a bag with all the ingredients ready to grab off the shelf and prep.  I have some things already that I like but meals in a jar is something we can use for long term storage as well has easy to go meals.  I joined Thrive Life and decided to become a consultant since I can get the lower prices for the products.  Plus, I really believe it being prepared and want to try harder to do that.  Covid got me that frame of mind and who knows what can happen.  I don't want to be unprepared for an emergency.  Anyway, that's where I am today. 

Anyone interested in Thrive Life, just click on Thrive Life.

Silly G

1st Day of 1st Grade

Crazy moments with my daughter...

So this past weekend, G and I went to the pool.  I love taking her there.  The temps are really hot and I thought it was all going ok.  G got sick in the car on Thursday last week so J and I worked to get the smell out and clean it up. It still needs a really good cleaning but it smells ok.  So fast foward to Saturday.  We went to the pool and G and I were leaving.  Somewhere, somehow, she put goldfish in the cap of her water bottle.  I'm not sure why.  But she opened it all the crumbs came out and I lost my cool.  I asked her why she did that instead of just taking the bag of goldfish.  I told her she can't eat in the car if she's going always make a mess that others clean up.  Anyway, she then threw her water thermos.  I drove home angry.  I got out of the car to go to the front door and open the garage from inside (remote wasn't working). I came out and she was stomping on my phone in the grass saying I locked her in the car and closed the garage.  She went into the house and J followed her.  She hugged him and he came out.  It was then that I realized the windshield was cracked.  Huge crack and it'll cost us 500 to fix.  He went back inside and said, you broke the windshield.  She then kept stomping on his feet to hurt him.  Then went back outside to continue to stomp on my phone.  She was out of control.  Was it hunger, was it the heat, was it exhaustion?  I don't know.  She's seeing a therapist as I write this.  I hope she can help.  We need help parenting her.  The rest of the weekend was glorious.  She becomes really scary when she acts like that so something isn't right with her. I hope this therapist can help.

Struggles...

I love J but he doesn't always realize he's doing damage to our daughter.  He keeps commenting that he doesn't know how long he'll live like this.  She hears this and I can only imagine whats going on her brain.  She's been super clingy too. I want Daddy, running into Daddy's room, I need Daddy.  It's been over and over again and he says something not right with her.  I want to say, it's you.  You keep telling her it's over for you and you are not going to live much longer.  Every car ride you talk about it with me in the front and her in the back and she hears it.  I say stop.  I don't respond to it anymore.  If I say don't say that, he gets mad and loses it.  It scares me as well.  I'm not immune to his impending death.  I think if keep saying it over and over, eventually you'll accomplish the goal of dying.  Always so negative.  I want my little girl to be ok but he scares me.  And I'm at a loss at how to get him to stop.