Family · Self

Update. What’s Going on Part II

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I’m back with Part II of the update.  In the last update I told you about finding a special school for my son to attend.  We are still trying to finalize his attendance. Since the school is so small there isn’t a lot of hard core directions or go to persons.

I have yet to remove him from our public school system.  I’m waiting until the first week of class before I do that.  Just in case there is something catastrophic at the new school. I hope things go well.  Right now I have to keep focusing on getting “E” to attend class.  My mind keeps jumping ahead and thinking “Is he going to lose friends? Is he going to make friends? Will the school get accreditation? How will we pay for this?  How can we afford college?  Can we retire?” That’s just a sample.  There is so much more going through my mind.

We were going to send “E” to a week long computer class the school was offering.  It was unfortunately cancelled due to low enrollment.  They had another class the following week.  He couldn’t attend that as he was taking a coding class.  He really wanted to take the coding class.  Since he is not panicked to attend coding we want to encourage that.  I don’t want him to get too agoraphobic. I see hints of it. I also see hints of OCD but it hasn’t gotten to a full blown issue so I am just leaving it.

The funny thing is I planned my schedule around that class. I had cancelled over 9 different appointments to accommodate that class.  Story of my life that.

At home we are still having some trouble with him. Some of it is what he has been diagnosed with, some of it is being a teen, and some is brat or only child syndrome.  I don’t know how to handle it sometimes.  I think because he was so easy as an elementary school aged child he’s making up for it with gusto.

We recently had several appointments with a local psychiatric center that is known for diagnosis and classes to help people with mental limitations or illnesses.  Over the course of two meetings I handed in a two inch thick pile of paperwork on E. We initially went to see if he would qualify for one of their groups.  Mainly to help his severe shyness.

They agreed that he would benefit from several services.  The first thing is family counseling, then they recommended a diad. A diad is two kids and two therapists.  It’s kind of like group therapy but with one other person.  It’s sort of the next step from individual therapy to diad then on to group at one point. They also recommended case management.

They had offered the family therapy right away. However, the time they had would interfere with Erik’s school.  I told them I wanted to be put on the wait list for two different locations near us.  We need to get acclimated to his new school and schedule. Taking him out early would not work for him.  Granted we will be doing this in the future, but I will wait till September before I start it. It would be too much going on for us.  Just like I am putting off E’s eating therapy too. The anxiety, depression and school has to take precedence.

Since “E” couldn’t attend that class we went to the new school last week to meet two of the teachers.  We spent about an hour there.  “E” didn’t want to talk much.  He spent most of the time on his ipad.  It’s his way of coping.  Hopefully, everything will go well. I want to have him develop other coping skills.  Maybe he will get some from the other students.

During this time I also visited a geneticist.  Mainly because breast cancer runs in both sides of my family, and last year’s breast cancer scare. I had just one meeting and she said my risk isn’t any different from the general population.  I wasn’t worried but everyone else in my family makes it a big deal.  Now I can get people off my back.  For me, we all are going to get something.  In fact, we will all get multiple things health wise.  I’m not going to be paranoid.  I just want to take care of myself.

Speaking of which, I have gained weight.  I am so disappointed in myself.  I have to recommit to losing weight.  To losing a significant amount of weight and getting healthy.  Damn, I wish junk food wasn’t so good.  I also want to be more healthy since all this stress has come up.  My body isn’t able to cope.  I have increased panic attacks, nausea and gastrointestinal issues.  I’m exhausted all the time. So much so I can sometimes stay in bed all day. Then the migraines and chronic pain are rearing their heads.  Self care needs to take a more important role too.  I need to get back to regular chiropractor and massage therapist appointments.

This concludes my “update.”  Thanks for letting me rant.  Sometimes you just have to get it off your chest.

 

Self

Update, what’s going on. Part 1.

Placeholder ImageIt’s been a long time since I last updated you on what is going on in my life. It’s still rough. E finished his seventh grade year in public school. He could not get past only 15 minutes in a single math class. He has gone from the advanced group to the below average one. This is a kid who is extremely smart. Who had A’s and B’s before and now barely gets C’s. Since he’s not in class he doesn’t learn everything he needs to. So we’ve been paying for a tutor twice a week. It’s financially painful.

As school ended we met with his teacher and case manager to plan for the upcoming year. We made a list of things we wanted to improve for next year. I only hoped we could get it together by the end of 8th grade. If not, we were going to have problems. I was not only concerned about his anxiety but also his education and social development.

We were at this point taking him to an eating disorder clinic for ARFID twice a week. After several months of going the clinic told us that we didn’t need to come back. They didn’t feel Erik’s problems were the result of ARFID (Avoidant Restrictive Food Intake Disorder) but more of a sensory issue. So we will have to try Occupational Therapy and Food Therapy in the future. I have a lead on some places to take him. I am going to hold off until we get his anxiety under control. It’s just too much. The anxiety and depression come first. They overwhelm everything.

In the summer E’s therapist has decided to not do talk therapy anymore and concentrate on his extreme social anxiety. They are going to do exposure therapy. She thinks if he can get a handle on his social anxiety his overall anxiety and depression will get better.  I am glad she is willing to try something new. This doing “challenges” is what helped me to get over anxiety myself.  Knowing that, my husband and I have kept him going places to prevent him from being agoraphobic.

His Psychiatrist says he doesn’t know what else to do for meds.  He’s basically on it and at the max dose for a child.  I still think it should be increased, but I don’t own the prescription pad.  He sees his therapist weekly and his psychiatrist every two months.

We have been having E tutored twice a week during the summer.  We found a tutor through Wyzant app and website.  (No ad, that is just what I did.)  I didn’t have the faintest clue how to find a tutor and this site is really helpful.  He is tutored in Math and some English.  Sometimes he had a good tutoring session other times its a disaster based on  his anxiety. It’s hard for us as it’s a cost that we haven’t anticipated.  I am also tutoring him in History and Life Science.  I was hoping to be done by the end of summer but it may have to go into the new school year starting in September.

This summer we have also been looking for alternative schooling for E instead of the public schools.  The public schools here are very good.  Academically, we have no complaints.  In dealing with them for my son’s illness and disabilities, there is a lot to be desired.   Granted he is one kid among thousands in the district but this is what we pay our taxes for right? We figured that we would give him one more year to turn it around.  He will be in 8th grade this year.

However, after the tour of one of the schools I felt really good about it.  They have a lot of kids with severe anxiety attending.  It was nice to not have to explain E’s situation every time.  Someone “gets” it.  We decided that he would benefit from attending immediately.  Luckily there was a spot left for him.  So we didn’t have to wait.  We have been filling out paperwork and submitting lots of stuff.  Finally, we found out that E was excepted to the new school.  I know he will be nervous, but hopefully this is the thing we need.

The school never has anymore than 32 students.  Depending on the year the total number fluctuates between 25 to 32. Each grade has 2-4 students. I know it will be rough.  I hope this helps and he makes friends. The options that are left are not that great.  If they are really options at all.

I will continue updating you on what else is going on in Part II.

 

 

 

Self

Update

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It’s been awhile since I have updated everyone on my life.  Honestly, it still feels out of control.  It’s like I almost don’t have my footing.

As I wrote before, I have just gotten over a severe case of pneumonia over two months ago.  It was horrible.  I still don’t feel as if I have recovered from it.  In the past two months I have gotten a lot of stomach bugs and one regular cold.  Ah Winter, the season that keeps on giving. I just haven’t felt right since. I was pretty rundown before the pneumonia.  However,  this feels different.  I think since I am still under a lot of stress my body just can’t take it.

I have had to miss so many appointments and cancel out on people in the last few months. I really hate doing that.  Appointments are so hard to come by. I tried to avoid  same day cancellations.  I try to at least get the provider their tip so they don’t lose out on money.  Fortunately, I only had one or two that I had to do that way.

I am trying very hard to get back to feeling better.  More water, eating better and trying to get out of the house.  I have also spent more time doing self care.  Going to bed early, getting a massage and other things. I still have a long way to go.

My son is still at the same point as he was at the last update.  He can only manage about 15 minutes in one normal class.  I have no idea what to do next. His therapist and I are challenging him to do one extra minute a day. So far he hasn’t done it. If he can do one extra minute a day, he will be up to an hour at the end of the year.

In addition to his mental health therapy I have started to take him to an eating disorder clinic.  It was the same one he went through last year. So I returned with him on an outpatient basis.  He goes to a dietician at night and family therapy in the afternoon. So far I’ve gotten him to eat a banana but not much else new.  Apple no, Tater Tots no, and other things?? At least he is crazy about Ramen.  He eats about 4 bowls a day.  The only problem is he eats noodles.  What I need help with is fruits and veggies of which he eats none.  I’m not 100% certain of the diagnosis of ARFID, as an eating disorder.  The also want me to start seeing and OT again.  They are going to try and get referrals for me for my son.  Another provider to visit?  I don’t know.  He saw an OT for over a year a few years ago. It didn’t do any good.  Would a different OT do anything?

He’s seeing a tutor twice a week on the weekends.  He isn’t in math class long enough to understand the teaching.  However, everything he turns in is late because we have to wait for the tutor. I have purchased a Life Science and History textbook to help him understand what he missed in the school year this summer.

I see my son getting left behind. I don’t know what to do.  He gets upset and goes through crying spells and anger at this anxiety. I don’t know what else to do.

I have gotten to go somewhere for fun twice in the last six months.  I went to a flower show which was cute.  Then I also saw a decorator home open for charity.  I think I need to get out more!

 

Family

UPDATE

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Oh boy, it’s time for an update. So much has gone on since September, the last time I updated you.  Honestly, the last two months have been so physically and mentally draining that I don’t want to recap them. I am drained. All I have the energy to do is listen to podcasts.  Even then, I find myself falling asleep sitting up. I the energetic equivalent of a garden slug.  Although, I’m pretty sure the garden slug has more pep.

I keep hoping for progress. My son has had difficulty since school started.  We had to reschedule and restructure his day multiple times.  He has been routinely having panic attacks.  It got to the point where he could only go to three classes.  I was also called a lot due to him having panic attacks and needing me. Sometimes the call would go to voice mail and all I could hear was my son’s incoherent stuttering on the other end. I would often come to sit with him in the office.

Once the school physically walked him to class and sat with him.  Then they refused to let him call me.  I wrote a very strongly worded letter that they could not do that again.  I’ve got a kid suffering from horrible anxiety and was hospitalized for suicide attempts.  Not the kid you want to upset and embarrass in front of his peers.  I had trouble getting him to go back.  I told him I made sure that it would never happen again. I do not think the school was very happy with me after that.  There was definitely a cool reception for me after that.

I understand that they had the best intentions for him at heart.  However, many people do not understand anxiety disorders.  There is a lack of understanding and empathy for those with mental health issues in general.  My kid is normal.  He just has this issue.

I kept taking my son to school, sometimes staying hours there myself.

The school kept pushing me to enroll him in another school and another program.  I felt we couldn’t give into the anxiety and would just have to work within the school parameters.  Then we got a letter from the Dean of students saying he had to meet with us because our son had missed too many days of school and is a truancy problem. He said we needed a plan for my son.  Um, that’s what I thought we had going with the school.  I kept thinking why doesn’t this guy know?  Don’t they all communicate?

My understanding was that the school and my son’s therapist were working together.  So I made the appointment.  We get together with the dean and some other members of staff.  So the Dean has us fill out this paperwork for the county. So we begin to answer all his questions and he fills out the form. We went through everything that has happened in the last year and what we have done.

Halfway through filling out the form he stopped writing as he ran out of room on the form.  He was very surprised at how much we had done.   In fact, we have done everything.  There could be no more recommendations. The “plan” was the same one we had before.  To slowly get E to integrate into each classroom. Like to keep adding five minutes each day until he can stay for the whole period.  Unfortunately, this was not working.

Several weeks pass and I get a notice for another meeting.  This time with more staff, most of the people I have dealt with before.  E has not been improving.  So they try to force my hand.  They wanted him to go to school at the other junior high and be involved with this special program.  He would be in a room with kids who have high functioning autism.  He would have two classes there and then be in regular classes for the rest of the day.

If he can’t go to regular classes at his old school with teachers he knows, how is he going to attend regular classes at a new school?  I know the stress would push him over.  Homeschooling is not an option.  He can’t stay at home for the rest of his life.  Making his circle smaller only increases the anxiety.  So I felt we were at a stand still.  My husband thought we should try it.

He often agrees with whatever the person running it says.  He doesn’t deal with the schools and doctors like I do.  I get so angry at him for this.  I have dealt with anxiety and depression my whole life.  It runs in my family.  I know what I am talking about.  These are administrators and teachers, not mental health professionals.  So what to do?

Then it dawns on me.  I will let him go to the new school if he gets to stay in that special room for every class.  They will only integrate him if he is comfortable. That way he is with the same teacher and same aides.  It will help alleviate his stress.  They have two weeks to see if this works.  If he gets worse, he is going back to his own school.  If he is the same or better he can stay.  He will still have a new case manager and social worker.  At least he knows the school nurse as she is our neighbor.  It’s hard to leave everything you know.  Even if you don’t go to it all.  So far nothing has improved but it has not gotten worse either.

I have had to pick him up a few times due to the anxiety making him unable to do anything.

In reading the paperwork done by the dean of students I noticed that it said that if no changes were made the matter would be referred to the district attorney.  Huh?  They told me this was just a formality.  So I called our family attorney.  She said she knew what it was, but there was nothing to worry about.  She said they do that if there are families where the parents won’t or can’t help their kids. Since we have been doing everything and can prove it, the county will do nothing.  That was a relief.

Also, at this time, I took my son to his therapist. The therapist up to this point has been trying to get E to work on his anxiety and being supportive.  This time she decided to play bad cop.  She really lit into my son and had him distraught.  She told him that we (his parents) were going to get into trouble and he would be taken away.  Then she told him she wouldn’t see him again until he could go to four classes.  This didn’t work and he was so upset he thought he was going to be put up for adoption.  Don’t know where that came from. I spent the next few days telling him he wouldn’t be taken from us.  He clung to me so tightly.  This changed nothing.  Now, I am trying to find a new therapist b/c he won’t go back to the old one.

I spent a week trying to get him into a new therapist in town.  I called 4 times and sent one email.  No response.  So now I have a phone call into a new place.  I hope the will call me back.  I really feel that he needs some counseling. I have also started calling a second therapy group as a back up.  They are not taking new clients and have an extensive wait list.  So they gave me the name of another therapist to try.

We have increased some of his meds.  He still has his psychiatrist. E has however lost weight.  So the psychiatrist is worried.  E won’t eat any breakfast or lunch because of his anxiety.  Add to that his sensory issues and he barely eats anything. He definitely does not have a balanced diet.  We try to supplement things with nutritional shakes and supplements.  It’s the best we can do.

Our son’s grandmother came to visit for about a week.  I spent that week, both morning and evening, sleeping.  I was so exhausted I couldn’t get enough rest.  I think since I can trust grandma to handle things my body was trying to catch up and rest.

I want desperately to have a different life.  I just feel so buried with everything I don’t know what to do.  I have ideas of directions to go, but time?

I’ll update you again shortly.

 

Family

Giving You a Quick Update…

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Hello everyone.  I”m sure you have noticed that I have been a little MIA the last two weeks.  My son has started back at school.  He wanted to go to school and his depression has improved greatly.  His anxiety still showed, but he was doing much better.

The first week of school he did okay. He had some panic attacks but was able to attend most of class.  He had a difficult time with Health, Science and History.  Not so much due to academics, but due to the subjects they were studying.  He can’t handle things with blood, or creepy.  The school allowed him to drop health.  Then we were able to transfer him to an Earth Science class. We will have to take history as it comes.

The second week of school he missed a lot. I ended up going to school  to sit with him and spending time waiting there.  He barely spent time in class.  So we had an emergency meeting with the special education department and the school social worker.  They tweaked his schedule even more.

A few times when I had to go to school to be with him. I found him shaking from his nerves. So I put in a phone call to his psychiatrist.  He prescribed a fast acting medication to help him get through the day.  After two days, it was not working enough so the psychiatrist increased the medication.  It made him too sleepy to go to class and he still had panic.  He was just tired with panic. So we went back down to a lower dose and were able to get into see the doctor soon.  I think we will have to wean him off the current meds and put him on new ones.

The poor kid doesn’t eat much either.  I worry about him so much.  Today, was the first day he went to school with the new schedule.  He made it almost through to the third period.  Hopefully, tomorrow we can make it to fourth period.  The stress has been very bad for me.  I ended up throwing up today.  It just hit me out of the blue. I haven’t been ill from stress in over thirteen years.

I am hoping I can get this figured out. It’s been a draining year.  My son’s anxiety is primarily related to school. He used to have it in other places, but we have made a conscious effort to help him overcome his going out phobia.  He still is socially extremely shy but can mange.

When he is in his element, he shines.  When he goes to coding class after school he shines. He is able to talk about anything computer related.  In school, if he does things with computers it really brings him out of his shell.  I can only hope that it can grow into other areas.

I will keep you posted.  Wish us luck.

Family

Update, Part 5. My son’s struggles with anxiety and depression.

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While in PHP (the partial hospitalization program) we would get a sheet home at the end of the day.  On it, they score E on his participation in each element of the program each day.  Sometimes he didn’t participate.  Other times he was crying or upset.  Sometimes he did a great job.  A typical 11 year old. I wrongly assumed that they were working on getting him to participate.  They were the experts right?

On one of the last days before discharge we were brought in for family therapy. To be honest there was not therapy.  It was just talking, a Q and A. They told us that discharge was happening in a week and we needed to make other arrangements. They then proceeded to list what we should be looking for.  I could only think “Why didn’t you tell us he would need more therapy when he first started.”  Programs for children his age are few and far between. When you find one to take him, the waiting list is usually weeks long.  What to do?

We (the school district and I) decided to start E back to school on a partial day.  We would then work up to a full day.  I did alert the school that he had not received a lot of therapy and coping skills.  I was hopeful that by the end of the school year in early June he could go to class for three hours.

The first day we got into the building and sat in the office for the third period.  I congratulated him. I asked him if maybe he could try five minutes of class the next day.  We got back to  school the next day and he made it to class for third hour.  The teacher said he did great.

I was so pleased.  I was sure that he would go again tomorrow. Tomorrow came and E was so nervous.  He didn’t want to go to school. I was able to get him there. We go inside and for twenty minutes we are in the main office.  I try to encourage him to go to class.  He has a meltdown. So we sat in the office with him clinging to me and whimpering.  We left early.  The day after he refused to go at all. I was able to convince him to let me drive him to the parking lot and we would sit in the car. So we did the care for 15 minutes.

The next day we increased our car in the parking lot time to 25 minutes, then so on.  When the next week came we started going into the building and sitting in the counseling office.  First for 5 minutes again and then the rest of the time in the car.  I also did the increase as this week went.

We also found time to sign E up for next year. He chose computer classes for his elective.   I am hoping he will be attend class. He has now been able to sit in the counseling center for the entire 3rd period.  He has been able to do it for 3 days in a row.  For the first 2 days, he had panic attacks at the end of the time.  He wanted to leave, but I wouldn’t let him.  He finally was able to get a hold of his anxiety. I am hoping if we can still go next week.

Next week, we are going to an intake meeting for a new day treatment program.  It should be a half day program in the Summer.  I’m not sure what good it will do.  It is with a different counseling center than what we have been dealing with. I hope it will be helpful.  I feel like he hasn’t gotten any help yet.  We were told by the PHP that this is a step down in care.  I’m not sure. He hasn’t had any care yet and I am concerned.  If they enroll him right away we will not be able to try to go to school again.

There isn’t much time left.  School is ending soon.  I had hoped to be further along in his recovery from  anxiety and depression. I just have to take it as it comes.  I would prefer things to be more planned.  I’m not able to plan too much as I have to rely on other people. (doctors/therapists)

I did send some flowers to E’s case manager/teacher.  She has been super helpful. I have always been amazed how accommodating the school has been.  It is a complete difference from my experience with his elementary school. I’m really grateful that they have been so accommodating.  The stress would have been so much greater than if they were not helpful.

I have also made the decision to break ties with E’s old therapist and have gotten him a new one.  I told my son the new therapist is closer to home. Which is true, but not the main reason.  We really have to see more concrete effort.  It has been months and he has gotten worse. I have high hopes for this new therapist. It will take E awhile to warm up to them.

I have also arranged tutoring for E this summer.  So he will be caught up academically by next year.  We also went back to see his old Psychiatrist.  The Psychiatrist said he would increase E’s medication slightly but he is concerned that he hasn’t made any progress.  So I told him about the new therapist and other things.  I also created a plan to help him for the summer.  I am hoping that it will help him overcome his anxiety and depression.  I am hoping he can make it next year.  I only have 3 months to help him.

There are so many things that I need to do in regards to E. I can only do so many things at once.  The big thing is to get him in control of his anxiety and depression.  After that is done I can address other things.

 

 

 

 

 

Family · Uncategorized

What’s going on, in May. Part 4.

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What is going on now.  Things are still stressful. I’m still physically and mentally exhausted. Honestly, I am so angry over the last two months.  I am really angry at the mental health clinic that has been treating my son in one form or another.  Where to start?

If you remember from my last update, we were trying to get E tutoring from the school district. We were able to secure tutoring for E after school. A teacher would come after school for an hour each day.   Fortunately, my son really liked his tutor.  They covered several pages in his math book.

As I also said in the last update post E was on the waiting list for the PHP he last attended.  While we were waiting I was able to get E twice weekly therapist appointments. We also started him on his third medication.  We are seeing a slight improvement in him.  I fear that his dose is too low.  Unfortunately, with children you cannot increase as fast as in adults.  It’s an extremely long road. I’m still exhausted and depressed myself.

After having the tutor over to our home for one week when I get a phone call.  It is the PHP (partial hospitalization program).  They have a spot for E.  He can start the following week.  Ugh.  Of course, when I got the tutor up and going he would get into the PHP.  I am hoping that he can get some coping skills this time. I am hoping he will talk about hurting himself less.

For the first couple of days back at PHP E is sad.  His friend Johnny would not be there and he missed her.  I can’t lose any more friends he would cry to me.  E has lost a large number of friends in his short life.  All of them have moved away.  I count about 6 or 7 friends  who moved.  E is very, painfully shy.  While he makes friends easily he also feels their loss deeply. My son is a nerd, polite, shy, self conscious, friendly and helpful.  Many kids have said so.  Even though in PHP there are different rules than outside.  You can’t be in contact with people from the group.  I’m sure it had to due with confidentiality and safety.  How do you explain that to an 11 year old?  I tried to tell him it was not about him or his friends.  This was the rules for everyone.  Even with that it caused him so much pain.

This time round he made another friend named S. S likes video games and anime like E does. She has also got him into drawing.  I have tried for years to get my son to do artistic things. It’s not his thing.  Until now.  I’m glad he loves drawing like I do. I know he missed S.  They are very much alike.  I’m sad that he has to deal with another loss.

In about four days after he started back at PHP I get a phone call from his social worker. “We think E is doing great.”  “He is not acting like he did before he went into lockdown. We think we may discharge him” she said.  Huh?  He hasn’t even been there a week.  He has anxiety through the roof, crying fits and talks about hurting himself.  To that they said “He isn’t doing that here.”  All I could think is of course he isn’t. He doesn’t want to go back to lockdown.  It’s one of his major fears.  He is terrified of being taken away from us again.

Here’s the kicker.  Our insurance doesn’t want him discharged!  Never had an insurance company want a person to have more treatment. The staff at the PHP is thinking that he should go to a special academy or day treatment program.  They told us to start investigating them.  We have no idea how to start. We do know of one academy. However, it’s over $30,000 a year.  Kiss retirement and college goodbye.  I also don’t think that pulling him out of school for a year to attend school at a day treatment program or special academy is the answer.  If anything it would cause him more harm. He could also lose many of his friends.

To be continued…