Wednesday, January 16, 2019

Cutting stress down using respite care

I am trying very hard to schedule recreational time, and I am making it a priority. I'm in a rut of feeling powerless and helpless with my constant infections, and our family trying to care for Andy and the other kids. A couple weeks ago, we took our two daughters to a waterpark for the night with some friends. It was a really nice break.

I have to admit, I was so sad when I dropped Andy off at the respite home. He started whining as we approached the home. When I took him inside, he started whimpering. One of the workers came out that he is familiar with, but he hasn't been to the home in many months. She started pushing his chair into the kitchen and he cried out like I've never heard him before. He was protesting to me against being there. I felt like I could vomit.
Andy getting familiar with the "new house"
The worker assured me that Andy would be okay, and that it's just been a long time since he had been there. I tried to comfort him, but she reassured me saying "Just go and enjoy yourself".  I mentioned that I'd call in a couple hours. I drove away in tears, and wanted to run back inside and bring him home with me. We were having him stay there for two nights.

I told my husband right when I got home that I might need to pick Andy up in the morning, and take him with us if he was still having a hard time. We both agreed. I called after dinner time, and found that Andy had been too upset to eat dinner, but was calm now. It made me feel horrible. I asked if they could try to feed him some crackers before bed.

I called in the morning to see how Andy was doing. The worker told me that he woke up happy and ate all his breakfast. It made me feel a bit better, but I still questioned leaving him there. I had so many worries, I thought it would be hard to be away. We started out on our drive, and were only going to be a couple hours away. We were really only gone until the next afternoon.

I picked Andy up two hours earlier than I said I would. I called ahead to let them know I was 30 minutes out. I felt bad when I got there, because he was napping on a blanket on the floor, and would now have to be woken up. They told me he needed to play in the room alone, because he was upset. It is also what I do when he is at home with us, and he needs to calm down and be away from everyone.

Now that our handicapped accessible ranch is almost finished, we will be moving in soon. It will be easier to have our parents stay with Andy if we want to go somewhere. He will be more comfortable not having to go to the home, but we will probably still use it on occasion.

I have planned another waterpark night away for the future, but this time, Andy will stay with our parents in our home. We will see how it goes. I think he will do pretty well. We are so fortunate to have supportive parents that help us out, and enable us to have some time away. It is helping cut back on stress, and lessening our feelings of powerlessness to be away from the chaos.

Thursday, December 13, 2018

I have IgA deficiency

I'm not sure if all the stress is causing my drop in Immunoglobulin A, or if it's always been this way. I've been struggling to stay healthy for the last several years. Every time I get a small cold, it always turns into a horrible sinus infection. I've had my current sinus infection for 5 almost 6 weeks. It has been hard to study and focus on school.

I've been on three courses of antibiotics (Cephalosporins and Augmentin two different strengths). I am also currently on anti-fungal suppression therapy, after years of complaining to OBGYNs of my constant yeast infections. I have to take Diflucan once a week or else I will get a bad yeast infection. I have been doing this for 8 months or so. My last OBGYN told me to go see an internal medicine doctor to try and get answers about the constant yeast infections. A blood test was done on my immunoglobulin levels. The test revealed that my IgA is almost gone, its below 5.

When I read about the symptoms of IgA deficiency, it's all true for me. I have constant infections of the mucosal areas of my body, resulting in constant sinus and vaginal yeast infections. As it stands now, the infectious disease doctor wants to redraw my blood in 6 months. He will check it 2 to 3 more times before moving forward with any treatment. He wants to be sure that this isn't a one time dip in my immunoglobulin level.

I'm not sure if I would pursue treatment either. It would involve receiving blood products, which is risky in itself. There is a risk of an allergic reaction to the IgA in the blood, since I don't have any now. It is unsure if my body has now made antibodies against it, and if I would reject and try to fight the new blood product. The doctor suggested having me try to increase my intake of vitamin A and D, but I already take a big multivitamin every day. The doctor did not feel that collostrum supplement pills would help.

The doctor also said that it would be good for me to try and cut my stress in half, but he knows it probably isn't possible. I was crying so hard in his office. I always start crying when I talk about how stressful it is to care for Andy. School will be over soon, so maybe this will help my levels to rise back up.

Monday, November 19, 2018

Developmental Disabilities Research study for ages 5-7

Oregon State University is conducting a research study on children with Developmental Disabilities who are ages 5- 7 years and 11months old. Please click on the link below to participate.

NEEDED: Parents/caregivers of young children with developmental disabilities! 

Complete a survey to help improve our understanding of parental influence on physical activity and motor skills of young children with developmental disabilities.

To participate in this study, you should:
·     Be a parent/caregiver of a young child (5 years and 7 years 11 months) with a developmental disability 
·      An example of developmental disability includes, but is not limited to autism spectrum disorders, intellectual disabilities, cerebral palsy, visual impairments, attention-deficit hyperactivity disorder, hearing loss and developmental delay
Participation in this study involves:
·      Completing an online survey, which takes approximately 13 – 18 minutes. 

Thanks for your help! 

Tuesday, October 2, 2018

ABA and PT

Andy is very busy, going to ABA therapy 3-4 times a week, and physical therapy twice a week. He and I are both getting a bit worn out from all the running around. He becomes very fatigued and takes naps at school and sometimes at ABA therapy for 30 minutes. I'm not sure if I need to cut back a bit, or continue this schedule. He goes to school as well five days a week.

I'm in nursing school also, so pretty soon my schedule won't allow me to keep all these appointments. Andy seems to be eating better with a fork since ABA, and is also sometimes trying to say words. He seems to be trying to gesture to things a small amount more also.

Saturday, September 1, 2018

Taylor Swift Reputation Tour 2018 Review

I am always looking for things to do with my daughter to lighten up the burdens of raising Andy. We are often so isolated from our family and friends due to his outbursts and behaviors that we get left out of a lot. However, we got together with my daughter's best friend and decided to pay for some great seats near a side stage, and it was SO worth it!

First of all, I would recommend that anyone pay a little bit more to get a good seat. It was so awesome when Taylor Swift came back to the small stages to perform! She was right in front of us! My daughter was pretty upset that she didn't get to give Taylor a high five, but she was just a few feet away, it was quite amazing.

We saw the Detroit show at Ford Field. The whole show was top notch. I would see her again, and pay for a pricey seat AGAIN. It is amazing that my daughter and I can share a musical interest like this. My daughter, who is 11, said "I've been listening to Taylor since I was born", and she has! I started liking country music at 18, and was excited when Taylor came onto the scene. It has been wonderful watching her evolve, and she seems like such a wonderful young woman.

She gave a moment of silence for Aretha Franklin, which was so great. Aretha's funeral was actually just a few miles away from Ford Field at the African American Museum on the same night as the concert. The acts preceding Taylor were awesome as well. This show is well worth attending!

What time does Taylor Swift go on stage? About 8:45. After you hear Joan Jett's "Bad Reputation" song. Charli XCX  goes on right at 7:00pm, and about Camila Cabello about 7:45. It was great to hear "Havana", and "Fancy", and Iconopops "I Don't care".

How long is the show? Taylor sang for two full hours, from about 8:45-10:45.

What songs does Taylor Swift sing? The songs were roughly, Ready for it? Bad Blood, Delicate, Blank space, Style, Love Story, Gorgeous, King of my Heart, Getaway Car, Look what you made me do, Shake it off, Dancing with our hands tied, End Game, This is why we can't have nice things, Don't blame me, Dress, and We are never ever getting back together

I tried wearing my purple wig for a bit, but we didn't get picked to meet Taylor. Maybe some day! We loved the show anyway, and had a great time! I also liked how it was a PG show, there wasn't any foul language or swearing. This is such a well-done concert and amazing experience, you will really enjoy this show!

We had to fire our builder. You can too!

My husband hired a supposed friend to build our handicapped accessible ranch home for our family and Andy. His new home building company had only built one completed home that had not been sold yet, which we viewed, when we signed on. Everything seemed legit, they had a lengthy contract in place, and seemed like they knew what they were doing.

We got a home construction loan that gave us one year to complete the project. We foolishly did not set any parameters for the stages of building, for example, roughing done at 8 weeks etc. We signed papers September 1. The project was dragging on and on, and our home was open to the elements of snow and rain (we are in Michigan) with an open roof for 5 months. There were many days where no one showed up to work at all. We kept seeing him starting other homes, and working on those homes instead of ours.

My husband Kevin complained to him over and over again to "please just finish my roof and get it closed up, and make it water tight", but he did not. His crew would instead show up and be working on the interior of the home, or the front porch and not closing up the several large openings in the roof. My husband then started complaining through emails to his friends dad, who is the financial backer and part of his son's new company.

They kept telling us, "this is a custom home, it will take as long as it takes". It was growing ridiculous, because after 6 months, there was no signs of the roof being completed, and his crew was showing up less and less. He would even tell my husband, the guys don't want to work when it's cold, I have no control over getting them to show up". Kevin told them, "You have 2 weeks to get the roof done, or I'm firing you". They didn't really care, and my husband fired him.

My husband had taken photos of other homes in the area that were being built after ours was started. After just 8 weeks, the home was completely roughed, and the roof and shingles were on. Kevin showed them this in comparison to where we were at after 6 months. "Those aren't custom homes", they would say.

We had to pay his full builders fee, which was insane. Otherwise, they wouldn't release the loan for us to hire another builder. My husband already had a new builder lined up. He was someone our son's school bus driver recommended. He was all ready to go, but the old builder slowed us up for another two months. We thought since this person was a friend (the old builder), they would just call it good for all the fees they had already received thus far,  but they would not.

This company is basically racketeering, because they promise to build you a house, and then they don't show up in a timely fashion. People get so fed up with them that they just want them gone, and by then they've taken all your money. It was a truly awful experience.

The guys father, who is a millionaire, would not allow his son to let us out of the contract without paying them the FULL builders fee, which they did not deserve. It was tens of thousands of dollars, which we don't really have to spare. My husband feels badly, and feels that he disappointed me and has let our family down. This is a home for a SEVERELY DISABLED BOY!!! These crooks are unbelievable.

The new builder needs to get paid as well, and so far is working with us despite our strained funds. He was actually heaven sent if you ask me. He is helping us out big time, despite his busy schedule.

The moral of the story is, any one can get screwed over by a builder, and it is SO scary. We were handing this guy huge amounts of money at a time, and trusting he would do the right thing. We never thought a friend would do this to us, but he did.

We were working with Chemical bank, so they at least have said they will no longer work with this builder in the future. We could not get the bank to state that they were "unsatisfied with the builder". If they would have agreed to this, we could have gotten out of the contract. We now have to pay a huge fee every month for going over the one year mark with our construction.

This new Michigan builder has done this to several other people. For one woman, in Canton, MI,  they completely stopped showing up. She was paying cash out of her pocket though, so they may have felt they wouldn't have any bad repercussions from a bank. Another man in Northville, MI, is still stuck in a contract with them, and refuses to pay their fees to get out of it. He cannot move forward as of now.

The builder's father has threatened to sue us if we put out any bad reviews about them, which further shows what bad people they are. They actually have no experience as custom home builders. I wanted to talk to some of the people they were building homes for, but didn't before we started the project. If we would have, we would have never used them. I don't even think they would really be able to provide any one with references that are real, because none of their customers would recommend them- ever.

We are so thankful for the new builder Walt Holden, he has so graciously been helping us pick up the pieces of this home construction nightmare we started out with. He has fixed several of the previous builders costly mistakes, that would have made the house irreparable in the long run. Things weren't done properly and now we are paying for his mistakes.

Monday, August 27, 2018

Seeing some progress from ABA therapy

Andy has been picking up a fork from the table and putting it in his mouth! It is so awesome to finally be seeing this happen. He is gaining muscle memory somehow through repetition with the ABA technician at therapy. We also reinforce this at home, but we've never seen a big change like this, so suddenly. The ABA therapy really seems to be paying off! He attends 4-5 days a week. Andy does start to lose interest in picking up the fork after about 5-6 times. Once this happens though, I hand him the fork and he will continue eating for about 10 more bites. If he starts lessening his grasp on the fork when I try to hand it to him, then we finish the last few bites with hand over hand feeding.

I'm trying to consistently show Andy that he needs to hold the utensil every time, if he wants to eat. He has no problem putting toys and rags in his mouth to chew on them, so now we have to push our expectation that he will feed himself. We are seeing some improvements, and this comes with a great relief! Andy does not stab at food with the fork, but just getting him to put the fork with food on it into his mouth is unbelievable.

Thursday, August 2, 2018

Trying ABA therapy

We are trying ABA therapy for Andy. He attends for several hours. They are working on his communication with others, and trying to get him to use picture cards to get what he would like. He has cards with his water cup on them, tv shows he likes to watch, and toys he likes to play with. The technician is working with Andy to show him how to use the cards. The hope is that he will pick up a card from a board and hand it to the technician. I felt he might be more successful picking up the card he would like, and placing it in a container, because he doesn't really hand people things yet. I don't know though, maybe he will surprise me!

The first few visits were rough. He was happy in the car, but when we arrived he was fussing and crying. After he played a few times with the technician, he started to become happy when we pulled up. He no longer fussed as we walked in. He will have a few crying episodes here and there, but the technician says that he does well there. There are other children in close proximity to Andy that are crying and fussing also, and sometimes this sets him off. We send him there with noise canceling headphones, that they use sometimes. They say he enjoys a sensory room with nature sounds going and lights hung up at the ceiling.

Andy is benefiting from this therapy so far. He is improving on fork feeding himself, as this is a goal they work on as well as here at home. I put the food on the fork and put it on the table or hand him the fork. He will then either put the fork down, remove the food from the fork and mash it up, or he will put the fork with the food on it in his mouth and put the food back down. They are also working on him shape sorting, brushing his teeth and communication.

Since Andy has been diagnosed with autism, his insurance will pay for ABA therapy. It has been great since I was able to get it started soon after his school year ended. He loves getting in the car and having somewhere to go, and things to do. It's been a real blessing for us, because I think it's helping him, and it's definitely helping us give him a great day.

Wednesday, July 11, 2018

Respite Home for one night for Andy

I dropped Andy off at the respite home, and didn't cry this time as I was driving away. The staff there are getting to know him. They know that he likes to be driven around, and listen to pop music. They know that he likes to play with bead toys, and he seems to be more comfortable with them. 

I dropped him off in the morning, and picked him up a little over 24 hours later. I told him "You're going to be sleeping at this house tonight, and I'll come get you tomorrow. " After I dropped Andy off, I went back home and my husband and I, and the girls got in the car to drive to a waterpark hotel. We had fun, but the 18-month old was exhausting. My older daughter had a great time. We ate at a cafeteria buffet with no wait time for our meal, so that worked out great for us. The baby slept just fine in her temporary crib in the hotel room, and even took a nap in there because the room could be darkened. 

We left the hotel the next day, I took everyone home, and immediately left to pick up Andy. He seemed happy when I picked him up. He was watching TV with his earmuffs on at one pickup, and the last one he was sitting by the window looking outside when I picked him up. He was happy in the car all the way home, and most of the day once we got back. 

The respite home has been a great resource for us so far. I do still want to attempt a couple nights away with Andy, but they are usually stressful. We will be taking him up North and to our camper for the day and we will see how that goes. 

Thursday, July 5, 2018

Using a respite home occasionally

Things have been tough as usual. Andy was having half days at school, but that is over now. I've been trying to get Andy into ABA, but it isn't looking very promising. The company advertises weekend and evening hours, but I've been trying to get Andy in there for two months now. They are telling me they hope to have him being seen by the three month mark. Summer is here, and Andy needs some structured activities to do. Otherwise, he gets bored, and has meltdowns.

We found out about a respite home a few years ago, from one of Andy's social workers. I was reluctant to give it a chance. I was worried about how Andy would do there, and didn't want to have him stay overnight somewhere. Recently, I've had a change of heart.

We called them to get started, and to just check it out. The first step was taking Andy in to eat lunch there, so they could meet him and see his demeanor. He did okay. He was a bit whiney there, and we played music for him to help him calm down. A couple weeks later, the next step was for them to pick him up from school in a handicapped van, and take him to the home to spend the night. In the morning, they returned him to school. This was a trial to see how he would do. They said he was okay to begin spending some additional nights there. We signed up for additional dates for respite time.

Andy will probably only go there 3-4 times a year, as there are lots of other families that use these services for vacations without their impaired child. Sometimes, he only needs to go there for 24 hours. This is enough time for us to drive to a hotel and check in there, and pick him up the next day. It has been an awesome resource for us to be able to spend time with our other children. It provides relief, but at the same time, we worry about Andy when he is there. I call to check on him, and usually feel better when I find that he is doing well. I also feel better when I pick Andy up, and he is happy and doing fine.