Countdown to Homelessness: 5 Days

Today I finally got some good news.  My uncle Walt happens to be in Phoenix in tow weeks to visit some family members on his side of the family.  I have never met them.  Though he is not in good enough shape physically to help with the moving part it will be nice to have a friendly face in town. My uncle has never seen the children.  That will be fun.

My parents were also able to get some money together and will be able to help with paying for two weeks in an extended stay hotel. It will be something cheap but it will be a place.  I am suppose to start my new job on October 15th.  This is good in some ways because it is sooner than expected.  On the other hand it is bad because I will only have two weeks to make everything happen.  To get into town, scout out a place to live, find a sitter for the children, get the children enrolled into the services they need and take them to where ever else we may need to go.  Mostly I am worried about getting the three of them enrolled in services.  For three children that is a process that can take, easily, a month to set up working on it all most full-time.

Still, it is overall good news and I am just hanging in there.  Something of a plan is coming together.  Maybe this will work!

Countdown to Homelessness: 8 Days

Photo Credit: minimalisthome.com

I had grand ambitions to have a garage sale today but I just can't get it together.  I don't have a lot of places to display the things  want to sell and I need to get the things that have been packed out of my way.  I was hoping to get some money to rent a storage room.  It looks like I will not be able to take much with me so every thing else has to be stored.  I will be taking the crib mattresses of Margaret and Joseph's beds.  Our clothes. Some kitchen and food stuff.  That will be it.  Everything else has to make it to storage, be sold, given away or thrown in the trash.

I spoke to my mother again last night.  I like talking to people when I am having anxious fits. LOL   She said she and others have thought about it and "they" think I should come back to Alabama.  I reminded her we have had this conversation before.  If I went back I cannot make it.  She said I could with her help.  I told her, "Why would I want to give up a job that I have worked for professionally?  A job that would allow us to support ourselves or be close to it along with State benefits? Plus, it would be a slap in the face to the 235 people I beat out for this job position.  I AM TAKING THIS JOB!"  She kinda chuckled at that point and said, "That's true.  You were offered the job over 200 people."  Maybe she got my point this time...lol.  This job is basically everything I have worked for and wanted professionally.  I am only sad because everything is happening a year sooner than I wanted.  I am mostly worried about Joseph.  I don't want to put his health at risk but other than that I am happy for us all.  I just have to figure out HOW I am going to make the transition happen!

Photo Credit: nvenergy.com

The electric company, I am afraid, will have to wait for their payment.  I have pretty much been convinced NOT to pay them.  This means the power will be shut off in the house on Friday.  I checked with John to make sure he was taking the kids this weekend.  It is suppose to be his weekend.  When I spoke to him he said he was not sure what I was doing.  I said I would be in town and taking care of the house.  That I did not have enough money to leave town until the first.

Me: I wanted to make sure you were taking them on Friday because the electricity is going to be shut off John: What are you doing about the water, gas and cable that are still in my name?
Me: Call and have them turned off on the First.  Then take the money out of the child support like you have been doing.
John: Okay.  That will take away some of your money to move.  I could skip paying them for a month and take the money out in November.  At least you should have a paycheck by then.
Me: Okay.

What else was I going to say?  You could cover the $250 worth of expenses since you did not help with any of the moving expenses?  I could but then again I did not want to pick a fight.  I would imagine I will be hurting for money just as bad in November since I will be trying to catch up with expenses and pay child care.  At least this is a problem that will move to November and I can worry about it then.

One day at a time.  It is ALL I can handle right now....one day at a time...

 

Countdown to Homelessness: 10 days

I have been writing this blog and detailing my experiences.  I have a badge on the right of the screen where I have been trying to raise money to keep the children and I from being homeless but so far I have only been able to raise $55.00.  Thank you to those that have contributed!  I had over 3,800 page views in the last month.  If everyone had contributed just $10 I am sure I would have reached my fundraising goal by now or close to it.  Please contribute if you can!

I was recently reading a post from a Facebook friend about how she has felt "let down" by her friends.  That she had been sick and in the hospital for all most two weeks and during that time only one friend called to check on her.  That was it.  When I read her post I was sad but I understood her feelings.

Here I am, a well educated woman, with three disabled children and I am about to find myself homeless.  I am fortunate in that my homeless situation should not last forever because I have been offered a job but that does not make the experience any less frightening or anxious.  Today I have been feeling so anxious that I feel nauseous. 

I have a few friends in town that know the situation I am in and none of them have offered to help (they are older though so I am not sure how much they could physically do).  The part that bothers me most though is hearing them say, "Don't worry Michelle.  You are a good person and things will turn out okay."  I am sorry but I missed where that happens in real life.  If anything I commonly see good people suffer all sorts of horrible things.  I think that is why I like talking to my friend Krissi lately.  She knows where I am.  She has been though it herself.  The only fortunate thing for her is that she never got as far as losing her house but it was close.  When I speak to her she offers me no false hope.  It is refreshingly nice.  

When I spoke to my mother tonight I was told God will help to make it happen and don't give up because somehow the money will appear.  Really?  So far the answer is, "No, it's not."  I have tried calling my oldest son, who is currently unemployed, to help me but his fiance is pregnant.  She will not let him leave her to come and help me.  Another possibility is my uncle.  He is an alcoholic and drug addict but is currently on the straight and narrow.  Should I risk my children being with him?  I don't want to and I am not sure he would even come anyways.  Random strangers answering an ad?  Even scarier thought but what choice do I have?

That is me up above.  I am a woman defeated.  You see me with tears in my eyes, dirty from sweating all day packing and tired.  I don't know how to stop the train wreck that is my life at the moment.  I have to be out of my current house at the end of the month.  I am facing having my electricity shut off on Monday.  I am hoping I can convince the electric company to leave it on for a bit.  At this point I owe them $700 for two months electric and a deposit.  I am sure I will have to pay them but that will cut into the money I need to move and survive for next month.  All I have done this evening is cry.  When I got back John did not offer to do anything to help me get to the welfare office.  I am on my own.  You have NO idea what the welfare office is like here.  People never bring little children in because they will kick you out.  It is the craziest thing I have ever seen but that is what happens.  The respite provider I have been using has taken a full-time job so she cannot help me.  She gave me the names of two other women but one said she would not watch my three children alone.  She said they were too much for her.  The other lady would not answer.  

I have reached out to the local regional center and this is the email exchange...

Hi Michelle,

I am doing quarterly updates on the kids. Could you please tell me how each kid is doing in terms of health, school, and additional services (speech, physical therapy, and Occupational therapy).

Also in order to receive respite for the next quarter, I need to know the name of the provider that you have been working with and whether or not respite has been helpful.

Thanks so much for your time

This will be pretty easy. SO far the children have, overall, been healthy. We had several trips to the dentist but so far things haven been good.

I have not signed the children up for school services for this year.

The kids had been going to private therapy. Margaret had been going to occupational therapy and Joseph has been in physical therapy. A month ago Joseph started to walk. His walking is very unsteady and wide legged but he is making it.

My husband left us in July. The children and I have been trying to make it but we are going to be homeless at the end of the month. I am not sure what we are going to do so therapy has stopped for now.

Respite has pretty much been a no go. I cannot find someone to come to my house to watch the children. The lady I had been using has found a job so she can only watch the children on Saturdays. That is not when I need someone. The other numbers I have called and no one seems to answer, want to watch so many children, or in town any longer.

That should catch you up.

Thanks,
Michelle

Thank you so much for the update. I am very sorry for your current housing dilemma. I can send you a list of community resources that may be of some assistance. Quarterly respite is due and I need to know if you would like me to take the kids off the list. If you do not anticipate using the respite voucher, then I will have to take them off the regular list so that children on the waitlist can use the respite. Please let me know ASAP so I can notify the respite coordinator. Sincerely.

The list of community housing resources would be useful. Please send that information. I want to use the rest of the respite voucher for this month. So please send the most recent list of respite providers. As for next month take us off the respite list.

I have not completely decided yet but we may move to Arizona at the end of the month.

Thanks,
Michelle

I know, I know. I lied to her (only about leaving for AZ) at the end but it is only because I want to see what she would do. So far I have not heard back from her and I sent her my response yesterday. Notice she did not say she would HELP me find a place.  Our regional center is basically useless.   : (  

Not sure what I am going to do tomorrow but I guess I will start off with calling the electric company and seeing what I can do.  The countdown to homelessness has begun...

PS.  To add insult to injury today I just realized that the little outfit the nurses sent home to me that Martha wore is NOT right.  She did not wear those clothes.  I realized it today when I came across the box with the outfit in it.  When I found the picture the NICU nurses took that day of Martha I knew as soon as I saw the romper again that was NOT what she wore.  I never had her little clothes.  :' (   

UCLA Neurology Department is a Disappointment!

So Friday I was hoping for all sorts of great phone calls and good news.  Sadly, that was not how things went.  So far neither of my phone calls to the homeless shelter in Phoenix had been returned.  I was even referred to the homeless shelter as a partner to another group that serves disabled children.  So I do not understand why I have not heard anything back.  

I asked my new employer for a job offer letter last week.  I wanted the letter as reassurance that I have the job but I also need the letter to show my landlord and a few other places as to why I am moving.  I especially need it for the landlord so she knows I am not just breaking my lease with her for the fun of it.  I called the office but my new boss did not answer his phone so I left a message. 

I called UCLA since I had not heard anything about Joseph getting an appointment there.  I call the number the registration department gave me and moved through the options.  After waiting for 15 minutes on the phone an actual HUMAN answered the phone!  I had NEVER had that happen before when I have called! I spoke to the receptionist.  I told her I was trying to get an appointment for my son.  So after giving her my son's name, UCLA ID number and other information she put me on hold and was gone for several minutes.  She finally comes back and says I will have to call next week to see if I can get an appointment.  What?  Are you kidding me???  I asked her why and she said Joseph's records were sent to the wrong department.  After fighting for about a year to get special  approval to see this doctor we did not make it last year.  It got too late into the year with the cold and flu stuff going around so I wanted to wait.  When I asked for approval again this year it took two months but I got the approval.  I NEVER thought to look and see if the doctor specialized in pediatric patients.  The receptionist told me that Joseph's records went to the pediatric department and their department just got them (adult side).  I was told Dr. Sheih could take up to 10 days to review the records.  I got upset then!  I had been trying to get Joseph an appointment for the last 6 weeks at least and I still did NOT have an APPOINTMENT! Just an appointment people! OMG!  Once he reviews the records he may turn down Joseph since he is so young!  UGH! We just need to see the doctor for a fresh muscle biopsy.  That is ALL!  So I told this to the receptionist and pleaded with her.  She said sorry.  I asked to speak to her supervisor.  I re-explained everything to him and he said there wasn't really anything he could do.  He gave me the direct number of Dr. Sheih's  assistant.  I also got the phone number for the pediatric side.  I gave the assistant a call and of course she did not answer so I left a message.  I called the pediatric side and yet again no one answered so I left a message.  Then I called Joseph's geneticist.  She was the one who wanted the test.  I called and complained to them.  The assistant there is SUPER nice.  She said she would call either Tuesday or Wednesday of next week after she spoke to the geneticist.  She said she is hoping the geneticist would call herself and try to push things along.  Then I called the insurance company and complained about the doctor NOT being a pediatric doctor. I was on a phone calling rampage at that point.  All I could do though was call and leave angry message everywhere and wait until Monday to get a response. 

I have been working on packing items.  I came across the older children's yearbook when they were in K and 1st grade.  OMG, did that bring back memories!  I cried.  I miss my older children.  I regret the time I had to spend away from them to work and go to school.  All the lost time!  I miss having my son around popping out of his room and giving me a hard time. I miss baking cookies during Christmas with my daughter.  I miss talking to her and her sense of humor. I am hoping she will come to visit me for Christmas but I do not know yet.  I was hoping my son ans his fiance were going to come out here and help me with the babies but that is not going to happen.  It would have REALLY helped me out, help them out and I would have LOVED to get to have and play with my grandchild.

One of the greatest things to happen around here in a LONG time is Joseph starting to walk.  It is both a good and a bad thing.  He fell EIGHT times yesterday. He busted his lip a little once and the other times added lumps to his poor little head.  :(  Other than the falling this makes me SO happy!  How could it not?  Just as recently as a year ago we wondered if Joseph was going to TALK or WALK!  A little after he turned four it was all most like a miracle.  One day sitting in the tub he was picking up the foam letters and telling me what they were.  He quickly progressed from there and now, about a year later, Joseph is speaking in full sentences occasionally.  When he fell into the floor he came over to me rubbing his head and said, " I bump my head mama. Ow."  He says it so sad and pathetic it breaks my heart!  I am glad he can talk though!

About a month ago Joseph started to take more steps on his own without holding on to anything.  Now he is mostly walking around the house.  He had a very wide-legged (V-shaped) stance and walk.  He takes REALLY small steps.  He does pretty well as long as he does not get too excited.  If he does then he tends to fall.  I have to watch him.  Sometimes, when he knows he is going to fall, he can catch himself or fall on his rear.  Other times he misses and bonks his head. 

I have noticed, and so have the therapist, that Joseph seems to have good days with motor skill and planning tasks and other days he seems like he cannot do it.  I have also noticed that since he is walking now he tends to take a nap again in the afternoon.  As I have mentioned I am wanting to get Joseph tested for mitochondrial disease.  The way he behaves with the motor issues I have often wondered if he suffered from silent seizures.  There was one time I swear I saw Joseph having a seizure.  The neurologist we see in Vegas (dislike him a lot bwt) did a short EEG on him (less than an hour) and said it showed no activity so there was nothing wrong and what I saw was Joseph having a night terror.  One plus to being older and having older children is I have had experience with night terrors and THIS WAS NOT IT!  Joseph not only did not seem like he was able to recognize me but the muscles ALL over his body were twitching.  What concerned me the most were the muscles in the middle of his back near his spine.  They were twitching too.  Those are not muscles the average person would ever have move.  Another thought I had was Cerebral Folate Deficiency (CFD).  CFD can manifest itself in a lot of ways.  Some of the possible symptoms are: ataxia, developmental delay, autism-like symptoms, intellectual deficiency, microcephaly, hypotonia, dyskinesias, spasticity, speech difficulties, and epilepsy.  Joseph has quite a few of these symptoms and I want to see about getting him tested since possible causes for CFD are genetics and autoimmune issues.  I don't think Joseph's cause would be genetics but it could be autoimmune.  I have autoimmune issues and so does he.  He has all ready developed autoimmune thyroiditis. 

Some resources for CFD are:
Cerebral Folate Deficiency (CFD) and Mitochondrial Disease
What Is Cerebral Folic Acid Deficiency?
Cerebral folate deficiency.Cerebral folate deficiency: life-changing supplementation with folinic acid

There is also a Facebook page where parents can ask questions about CFD, get information on CFD testing and other great tips is  https://www.facebook.com/groups/363697893680469/  


Here is a video of James and Joseph playing.  James watched the cartoon Sonic and he was running around saying he is as fast as Sonic. Joseph wanted to play too so he was walking up and down the hall...lol.  James is sometimes so rough but other times he is a good brother.  He did not even knock Joseph down while they were running.

I have been talking to my friends and family about our upcoming move.  I was telling my father that I was going to be homeless at the end of the month.  He said he did not believe that would happen. I said that was the path we are on.  There was no other way to see it.  He said he would talk to a cousin of his in the area that was big into the Shriners.  What good that would do I have NO idea. 

My poor friend Krissi, she lives in California with her disabled son, is appalled I cannot find help. Bless her and her indignant outrage...lol.   She lives in a small town and she wanted me to put together a flyer.  She said she was going to hand those out and put collection jars in the local restaurants.  It really is about one of the kindest things anyone has offered to do for me. 

I am not sure how the move will come together but it will one way or another.  I was hoping John would offer to take the children today.   It is not his weekend but if he took them for the day it would have been a huge help in packing and cleaning since they would not be under foot.  Plus, knowing we are leaving town, I thought he would like to spend what time he could with them.  Whatever.  The time is his loss.  As for packing, if I can't get it all done because of my hand (still having major issues from the carpal tunnel surgery) then I will call Goodwill or someone to come and take the rest away.  Got to have the house cleaned out for the landlord!

I don't know what to say...

I have not signed in for a bit because I don't know what to say. Spring is coming and the pace of my life is picking up again. The local school district finally got all the information they needed after I had to get some paperwork from the doctor. Now the children are getting homebound services. It was interesting because when the teacher first arrived she came just to talk and determine what she would need. She told me her plan was to combine teaching the children. So she was planning to teach James, Margaret and Joseph ALL AT THE SAME TIME! I was shocked at this! James is very advanced in several ways and can read at a second grade level, Margaret is smart but has a VERY difficult time sitting and focusing and Joseph is slow to take in information and respond to questions. The children are all SO different I did not know how she could possibly teach such very different children. I told her she could not do that. I said they would all have to be taught separately and maybe over time Margaret and James could be taught together. The teacher said she did not have time in her schedule to do that. I told her if the children were all in separate homes she would have to find the time. I said it is convenient for you to be able to drive to only one house but the children cannot be grouped together for lessons. She said she would have to look at her schedule but she was not sure on if there was time. I told her that was not my problem and it was not the children's problem. It was her problem or the school district's problem. LOL Can you believe I said that!?!? LOL She just stared at me and said she would have to get back to me after she examined her schedule and I said that was fine. LOL Score one for mom and ZERO for the school district. I hope I can keep the score like that. :)