I am so depressed today. I have been all consumed in work, watching Transparent in the background, and feeling sad inside. Nothing has happened. It has been a pretty stress-free, routine day. I am wondering if it is such a sad-mood day because it is my first full-day alone in my thoughts.
As noted in my previous post, I had both my second appointment with my psychologist and my first appointment with her recommended psychiatrist. I was not as anxious at my second appointment; my speech was not as rushed; my thoughts, although still rapid, came out a little clearer. However, I still had the tendency to move from topic to topic, time frame to time frame, issue to issue. The therapist showed me the note she faxed to the psychiatrist and gave me a copy as well (if lost in faxing). There were a couple of items I walked away from therapy realizing: 1. I internalize everything/am VERY sensitive. So, if I know a person would not purposely hurt me, I am most likely misinterpreting their words/motives. 2. In 42 years (with about 25 years in and out of therapies), I never really knew what I wanted out of therapy; what my goals are; what I am doing.
A visit to the psychiatrist is a stark contrast to seeing a therapist. I had been to psychiatrists in my eating disorder days. They seemed cold and I never was able to tell if medicine affected me positively, negatively or acted as a placebo. Therefore, I stopped going and stopped taking medicine. After I gave birth to Roger, I sought out a psychologist and she stated I had postpartum (believe me, I did not need a therapist to tell me that). My primary care doctor gave me a prescription to Prozac and I never since consulted with a psychiatrist.
My therapist told me to expect to take some tests to assess my diagnosis, as well as conversation. On any day, I’d rather take tests than talk. However, first came the talking. It was an anxiety-riddled collection of thoughts. I was all over the place. It probably came off as drug-induced conversation. I never know what to say. I say too much. Trip over my words. Feel embarrassed and idiotic. Act like I’m a prepubescent teen who has no knowledge of herself and life. Then came the easy part: the tests. The answer to most of the questions was Frequently. And I thought to myself, “Don’t most people feel like this most of the time?!”.
My diagnosis, according to the psychiatrist (and first pointed out by the psychologist), is undeniably Bipolar Disorder. My previous therapist gave me a diagnosis of Aspergers and OCD. It seems that bipolar is sometimes misdiagnosed as OCD and that the drugs prescribed (anti-depressants like Prozac — that was increased to 40 mg due to the OCD) actually make Bipolar worse. Bipolar Disorder requires mood stabilizers instead and a lot of OCD tendencies may be a result of having bipolar, instead of a separate diagnosis.
Although depressed over having a mood disorder, there is much to learn about the diagnosis and myself. I wrote many different verses to end this post but none can sum up how I feel. Please do not feel bad for me; do not pity me; do not state this is a false diagnosis; do not state I am strong and can do this. I love your support but am putting this out there “as is” and not for input. I have so many thoughts and feelings to sort out that I do not wish to misconstrue your words…
Today will be an interesting day.
Last week, I started therapy with a new psychologist. I dearly love my previous therapist (who is also Roger’s therapist). She diagnosed me with OCD and Asperger’s. She, too, struggles with OCD, so we had a connection. Unfortunately, she is in such high demand that having a consistent appointment would not be possible. She recommended the therapist I met with last Friday.
I think I overloaded my new therapist with years of information in such a short period of time. However, two issues that I have had recent problems with and are intertwined are: 1. lack of sleep (yes, still 3-5 hours per night) and 2. my reaction to trazadone. My doctor and previous therapist decided to switch my Prozac to a medication that would also be a sleep aide. The amazing part of trazadone was that I was sleeping a whopping 6 hours per night. The downside was I was not myself. I was on the medication for 2 weeks and feel like it remained in my system last week as well. My husband thought I was out of it. I was in a haze, but then had bursts of energy where I’d clean, shop excessively on-line, make a million plans, be obsessed with my phone even with my son around. I decided to stop taking it when my husband kept noting how I was not present. Once off the medication, I started remembering all the purchases I made, my consumption with the stupid phone rather than life, how I should not have been driving, how messed up on a prescription drug I had become.
Describing the above to my new therapist, she suggested that I see a psychiatrist because my lack of sleep and my reaction to trazadone is prevalent in Bipolar Disorder. I have to say my husband and I have used that term in passing due to my moody behavior. She thinks I may have approached medication the incorrect way thus far. I have not been to a psychiatrist since my eating disorder days of yore (decades ago!). I am quite nervous. After that trazadone fiasco, I am scared of any and all medication (except for my prozac and allergy medication). I have a back specialist appointment next week and am even fearful of medication he may recommend.
There are many things I look forward to changing through therapy but do realize that medication may help me reduce my anxiety, stress, obsessive thinking, crazy mood swings, depression, etc. I approach today taking baby steps towards larger strides in the future.
After being completely overwhelmed the past few weeks (months, years), I finally decided to take a week off of work and just relax. It has been over five years since I have had 5 consecutive days off of work. At the beginning, I had plans to try to: 1. exercise 2. read 3. blog daily 4. reconnect with me….and the list goes on.
After feeling overwhelmed by the to-do list for my staycation, I decided to not have any expectations or plans for my staycation. That has worked out best, for I have not done much. It is Thursday and this is the first blog post I have written. Exercise, Schmexercise. I did disconnect from social networks for the most part this week (or drastically reduced usage from a typical week). That has made me enjoy the silence a bit more.
Tomorrow marks the last solo day of my staycation. I have multiple doctor appointments, so not too much fun or relaxation ahead. I thought I would be bored by the end of this week and longing for work. However, I would love to take another week off!
September has been a really rough month for me. I have not felt myself the majority of the month and realized I missed my boring, old self! Here’s hoping October weighs a little less heavily on my mind and body…
One of the things I cherish most about being in my 40’s is being free from drama. I live a stable life: married to a man I have been with since late 2001, been working at the same place of employment since 2003, brought a beautiful child into this world in 2010, and bought our first house in 2014. Do I yearn for more? Sometimes. I wish I had more ME time, maybe go on vacation, read a book, lay in bed all day, etc.
Autism has created any drama I need in this lifetime. How will he react today vs. yesterday? What will his meltdown be about this morning, afternoon, and night? It makes me usually question spending money on a vacations that may be filled with meltdown or illness. Therefore, we don’t venture out too much. We take trips to the zoo or the aquarium, but our child is really not interested in either outing. He wants to look at the fans in the cafe or go to the giftshop. He always waits to be finished with the outing. When we went to ICE, he basically fell to the floor and screamed to be let out of the exhibit. It’s frustrating to lose that money and not be able to enjoy a holiday event with my son. Will he ever enjoy these things? Going to see Christmas lights in Orland had a similar blood-curdling reaction. Again, we were in a line of cars and could not just leave. Another past time I would love to enjoy with him.
Well, the next holiday is Halloween. He does love Halloween. He has to be Batman (like the previous 2 years) because that is the routine. And, although prompted to say “trick or treat” before every house, he will ring the doorbell and ask “Do you have fans?”.
This is the only drama I need in my life.
Next week, Roger has his second ADOS. For this process, our therapist and I have been discussing his first warning signs of autism, the stages he went through, what were the strong indications of autism and how they presented themselves, etc. Yesterday, I filled out the parent assessment regarding Roger’s skills, behaviors, and emotional development.
I always state how fantastic my son is (and he is) but filling out the assessment made me realize how stressful our lives really are on a daily basis. One day on FB, I saw someone ask a question regarding their child having about 2 meltdowns a week and if they may have autism (roughly around the age of my son). Two meltdowns a week would be awesome! We deal with 2 meltdowns before school, meltdowns in the car on the way home from school, after therapies, around mealtimes, with the going to bed routine. If we only had two meltdowns in a day, it would be manageable. Many questions focused on the frequency of tantrums, mood swings, anger, sadness, bodily harm, hurting others, etc. I cannot believe the amount of times I chose Very Frequently.
The last portion of the questions dealt with basic skills obtained: hygiene related, verbal, academic – counting/letters, fine motor. He does very well with basic academic skills such as number/letter recognition, but completely is lacking fine motor for school. He cannot write his name without tracing it or draw figures. In addition, he has great difficulty dressing himself and does virtually none of his hygiene without being aided.
It was interesting to reflect on how much Roger has grown and advanced since his first ADOS (3.5 years ago). It was also very sad to see all the skills and behaviors he still has. He is a gentle, sweet boy. However, his limitations must frustrate him. I realize he needs to learn better coping skills (as do I). I am very interested in seeing his teacher’s assessment as well as the finalized ADOS. This time it is not as nerve-wracking as his first ADOS, but it surely is bringing a lot of emotions forward.
It is good to reflect.
Today, I had my assessment at the physical therapist re: my chronic back issues. The appointment was long and thorough. I left with seven exercises/stretches to help my back. The majority of these stretches are yoga-related or stretches I used to back in Chico post-exercise. Oddly enough, I never had back issues in Chico once I began a steady exercise routine. Hmmm…
When I started out trying to set the exercise habit, I took yoga classes to insure I would exercise for a full-hour. If left to myself, I could quit halfway through but, due to my social anxiety, there is no way I would leave a class early. Once I became pretty strong in yoga, I started trying to incorporate more cardio exercise. I took zumba a few times until I started getting dizzy during some of the movements. Then, I had a personal trainer for a few sessions that showed me a routine that I kept up (expanding difficulty and duration) until I had my hysterectomy.
So, reflecting back, I believe I shall start my babysteps back….After my back is sufficiently healed by PT, I will start adding additional yoga to my routine. I cannot wait to feel strong again!
I waivered back and forth on whether to cancel Weight Watchers and discontinue the program. I also started tracking calories on my Fitbit to see how many calories I am actually consuming. In addition, I exercised Tuesday and Wednesday. Yesterday afternoon I decided to stop by WW for a weigh-in only after today’s allergy shots (yes, I get 3 allergy shots each week).
Well, I did lose a pound since last week’s weigh-in and .8 lbs overall (in my 2 weeks at WW). I was relieved that my weight did not go up and disappointed that my number was not lower. However, I am feeling better emotionally. I felt better emotionally after I exercised. I have decided that, more than the calorie/point counting, exercise is really important for me. Not just for aiding weight-loss, but for altering my mood. Today, I also did my exercise (starting slow: 30 minutes and hoping to add more as time goes on).
I am not going to beat myself up on days I cannot exercise (due to schedule/health/appointments, etc) but I shall praise myself for the days I do motivate myself to exercise…YAY ME!
This past weekend we celebrated Roger’s Fifth Birthday (although it was officially on Wednesday). We had a nice party at Jump for Fun (pretty self-explanatory: bounce houses galore). Roger and his friends had a blast. Like most kids, Roger could not wait to go home to open his gifts. We allowed him to only open those gifts from friends at the party. We were holding off on our gifts and the family gifts until his actual birthday. After he finished opening all of his gifts in about 10 minutes flat, he started demanding more gifts. I could not believe his behavior. It turned into a full meltdown. I realized he was tired and overstimulated from the day. I tried resting with him in the downstairs bed. He kept crying and screaming for more gifts. I actually don’t remember how he eventually calmed down (and, yes, I realize that was only a few days ago, but my memory is not too good).
Birthday part 2 happened on his actual birthday. We let him open two presents before school, bought cupcakes for his classroom at school, and were going to pick him up early to go to Chuck E. Cheese to celebrate. The day through Chuck E. Cheese went pretty smoothly (despite my deepest fears of that place). After Chuck E. Cheese we went to grandma and grandpa’s house for them to wish him a happy birthday. He was so excited for his present. I picked out an awesome Batman toy for them to give him. He loved it but immediately asked for a second present. Um…there was none. After a bit of playing with the toy at their place, he wanted to go home and open the rest of his gifts. He tore through them the same as he did with his other gifts. One gift was broken. I told him we would go to return the item later that day and get a new one. Unfortunately, my husband told him he could choose something else to replace it. Roger opted for a transformer and all seemed well….UNTIL he proclaimed he wanted a ride-on motorcycle with four wheels….a quad. Now, to explain that a $30 toy does not exchange for a $400 quad bike. I told him if he exchanged all his gifts he could get one. Holy moly two and a half hour meltdown!!! At one point, he went up to his room for three random toys he would exchange for a motorcycle: a stick and two microphones. It was adorable but he did not like the reality that an exchange like that would not occur. I told Rob that Roger did receive money for his birthday and could get a cheaper scooter ride-on. We all agreed and went to the store. After what felt like an eternity of sitting in various cars, looking at bikes, asking for large ride on cars and trucks, he eventually settled for two small toys that was equal to the original $30 amount.
Today is the day after his birthday. I pick him up from school and what does he immediately ask for: a new toy. Hey mister this is not a new gift-receiving routine.
Holy smokes, I do not look forward to the holidays now.
At my son’s Occupational Therapy session, I sat in the waiting room. There were kids who had many different diagnoses and issues. One child (a preteen) was a very loud talker. He first walked around the office looking at concrete objects in the room through a spinning app on his iPad. He was naming everything he saw in the room. When he was finished with that task, he asked a woman all about herself : what’s your name? what’s your favorite color? what’s your favorite number? If he did not like her answer, he would tell her what her favorite color or number was.
On some days, there are kids in waiting rooms of therapies that cannot handle noise, will cover their ears and hum noisily. Sometimes there are kids who LOVE noise and will try to make as many things smash as possible. Sometimes there are older kids who talk to themselves in conversation to calm themselves down. Sometimes there are nonverbal kids who communicate more with grunting or leading. Some children have physical disabilities as well. Sometimes kids flap, sometimes kids rock, some kids may be geniuses, some may have an intellectual disability.
My son has been exposed to all different types of children and adults. Subsequently, I have been exposed to all different types of people as well. Prior to having my son, I usually felt uncomfortable or not knowing how to interact: don’t stare, don’t ignore, what should I say? offer help? Thankfully, over time I have had more and more of an opportunity to speak with, laugh with, learn and not be “uncomfortable” around people. I thank Roger for that. And, what is amazing, Roger never notes if a child is having a full meltdown, injuring themselves, flapping, screaming, missing a limb, looks “different”. He just does not seem to notice or care. Or is it the norm for him to be around?
Inclusion for me does not mean my child is included with your “neurotypical” kid. Inclusion should mean that your child has the opportunity to meet all types of children. They need to see all kids as “normal” and not treat those with disabilities differently. If only I had the opportunity when I was younger….
Today is another post solely about me. After yesterday’s post, I became my usual OCD self — looking up Weight Watchers, meeting times, FB groups, etc. I ended up signing up for 3 months with meetings (there was a 20% discount). I began my points counting yesterday and attended my first meeting today. My stomach ached before the meeting: did not know what to expect, nervous to be weighed, and, overall, uncomfortable. Upon arriving, they had log-in stations that are partitioned off for privacy on the scale. The leader helped me sign-in, weigh-in, and with my paperwork. On a positive note, I was .2 lbs lighter than I anticipated when I joined yesterday. I was fearful my number would be higher. Sticking with the positivity — damn, that leader, was so enthusiastic. I am not used to happily, enthusiastic folks. I am used to more neutral beings.
The meeting was okay and the orientation afterwards pretty unnecessary (I reviewed the app yesterday). It was not earth shattering, but am hoping I am motivated enough to follow through.
Like a lot of folks, I am a bit food obsessed. Not as a foodie or one who enjoys cooking, but one who questions every food choice. I have had issues with food my whole life. As a child, I enjoyed eating boxes of macaroni and cheese and watching TV. This led to a chubby childhood, preteen, and teen years. When I was younger, I hated recess and gym. I recall being called a “tub of lard” while playing Four Square. Fun times. I did diet in high school and lost a bit of weight, had my first boyfriend, and, in the process, gained back all my lost weight.
Some time in college is when I fully became obsessed with food. I remember dieting at a normal level (or maybe just “eating healthier”) — not eating bread with my burger, eating more veggies, and eventually becoming vegetarian. At the same time, I lost a good amount of weight and I received so many compliments. However, I kept wanting to see lower numbers on the scale. I really started restricting my food intake. I never kept a food journal but I believe I ate around 500 calories per day. My weight continued to drop and my period went away (amenorrhea). I started growing a little fur on my body (a protective layer – lanugo). My weight was half of what it is now. People no longer complimented but called my parents or asked if I was sick.
I recall when I broke up with anorexia. I went to an italian place with my parents and could not stop eating. This happened a few times and I felt shitty afterwards. Then, bulimia became my best friend. While anorexia accompanied me for about a year, bulimia was present for a good 8 years or so. There were many things that occurred at that time — I really try not to reflect too much on those years.
Aftermath: I am not sure what is linked to this as my history, but now I suffer from IBS, have problems swallowing, have reflux (that brings the food right back up), have problems with digestion (things remain undigested for long periods of time), my memory is horrible, have sleep issues, incredibly low energy, have eroded enamel on teeth, have difficulty losing weight — usually have to restrict to a 1200 calorie diet to make headway, etc. I have been in many therapies and still go to therapy irregularly (mainly regarding my OCD). The therapists I have met in recent years usually think I am headed for an eating disorder or knew I had dealt with one without me having to tell them (due to my anxiety, depression, OCD, Aspergers and control issues).
Probably shared a little too much about my eating disorder history (maybe a little too little since it spanned about a decade of my life), but it helps to make me who I am today.
I want to get healthy but am afraid of becoming obsessed again. I have decided to try out Weight Watchers beginning next week after Roger turns 5 (so I can enjoy the sweets!). I really hope I can attain what I want without going to extremes. I am going to try to remain honest in my blogging to hold myself accountable.
My son may jump all over us and get a little rough when excited. However, when he is around other little kiddos, he is the most gentle child. He loves playing chase and tag and roughhousing without the actual roughhousing. When I see a child push him, hit him or kick him, I usually say something along the lines of “that is not nice”. So, yes, I am that helicopter mom trying to keep Roger safe.
An article came out last week which I will probably massacre in relaying. It stated something along the lines of 90% of teenagers with autism are bullied. Most are completely unaware as they think of the bullies as their friends. These friends will manipulate, steal, make fun of, etc. their friend with autism. I worry about him entering public school. I worry about what I do not hear or see on the playground. I worry… The one thing I do not worry about is Roger being mean or rough with other children. I have such a sweet boy.
Yesterday, I woke up and felt like hell. I slept horribly as thoughts kept racing through my head. I thought I must have the flu or some sort of illness: nausea, body aches, sore throat, headache. I made a doctor’s appointment for today.
Today, I woke up feeling pretty okay. I did not sleep so well, as a near-five-year-old kept kicking me in the thighs. However, I was not daunted by thoughts and could fall back asleep once I positioned him. I no longer felt sick. I still had a slight sore throat, but so very slight. I felt happy, energetic, ready to conquer the world (well, work and my 30 minutes of exercise).
The difference: support. Yesterday, I reached out and spoke “virtually” with some mother friends to sort out my crazy thoughts. My thoughts were not crazy per se…they were just driving me crazy! I also decided to let the afternoon take us where it may: picking up Roger, OT, rollerskating, talking about Inside Out, bath time, and, overall, sweetness.
So long overthinking — at least for one night!
Over the weekend, I have all these plans to reorganize all the closets, workspaces, files, toys, etc. when Roger is back in school. Additionally, I plan on eating healthy, exercising, and blogging. Then there is a restless Sunday night of sleep. I wake exhausted and barely able to function and finish work. I think, “if I muster up enough energy, I can start in ____ room”. I then make the decision to take days off to work on the organization but do not do so in fear that I will be too tired to do anything on those days and have just wasted days off.
At least I wrote a few lines in this blog…
Being the self-absorbed person I am (and working alone in my empty house), I have lots of time to contemplate all the things I should be doing, critiquing the things I am already doing, wishing to be a nicer, more open person, wanting to be confident. How does one move from the thinking to the doing?
In an earlier post, I noted that I have been taking tennis lessons. I have really enjoyed the one-on-one lesson where I learn my forehand, backhand, serving, volleying, etc. Last Saturday, I took my first group class (4 Saturdays). At the beginning, I enjoyed doing drills with myself and one other woman who does not play tennis. However, she is athletic and has a history in numerous sports, so she excelled. Later, a third person entered our lesson. As the lesson progressed, the coach wanted it to be a competition between the three of us. I loathe competition. I never wanted to compete physically or intellectually. I really don’t want to start now. I have three lessons ahead and already dreading the next competitive lesson. Here is when I get self-critical again: am I just giving up? I will most likely still go to the lesson but will be more prepared (emotionally) for the competitiveness.
Guess I will stick to solo practices for the future, the only competition with that is with myself.
So, I have ventured into a sporty side project: taking tennis lessons. While I believe I will not be any good at actually playing a game, I am enjoying learning the basics. We have also purchased an elliptical and stationary bike. Both of which I do on occasion.
Today, I decided to do a 35 minute yoga video. I have to admit I have never felt so out-of-shape before. My constitution is so weak. I used to be able to do these in conjunction with other work-outs. It never winded me like today.
It’s time to strengthen up!
My thyroid appointment on Friday went different than I expected. The surgeon completed an ultrasound in the office and went over my sonogram with me. From the looks of my ultrasound, I did not need a fine needle biopsy. However, we did discuss my various symptoms (which still could be linked to thyroid or hormones or, perhaps, my extreme allergies, or some combination of all). The lump when I swallow and hoarseness most likely are thyroid related. She said my options are to 1. “wait and see”, come back in 6 months, and do another ultrasound or 2. if the symptoms interfere too much in my daily life, I can have surgery to have the thyroid removed. I am choosing option 1 for the time being.
As stated in an earlier post, 13 days ago I started a new hormone therapy that my OB/GYN told me would change my life. I am still waiting…Now, in addition to all my other symptoms, I can add the symptom of incredibly painful breasts. YAY Me! I left a message and am waiting to hear back. The plan should be that they will give me an extra hormone boost and, hopefully, that’ll change things for the better.
In the meantime, I have been trying to be as “healthy” as I can seem around Roger. We went rollerskating in the park Sunday morning. Last week, after he got better from strep, I took him to the pool. I always feel badly that I always feel badly. “Mom is sick”, “mom rest”, “mom needs to take a nap”, “mom is in pain”, “mom is going to the doctor”, “mom needs to sleep overnight at the doctor’s office”. Roger has been bombarded with these statements. I am hoping that he will not hear those nearly as often in the near future.
Today started out as a pretty good morning — Roger and I kidding around on the couch before he went to school and I started work. I reveled in the happiness and the giggles. I gave him a huge hug and kiss goodbye….
Fast forward to 10-15 minutes later…I get a call from my husband: we forgot to put Roger’s nap pillow and blanket in the car. Roger was having a meltdown in the backseat of the car and they were stuck in bumper to bumper traffic. I did not feel particularly guilty and vowed not to obsess over it, since Grapevine would be over an hour round trip for me to deliver the nap set.
However, about an hour into work, I receive an email asking if I could bring Roger’s blanket to school since he was so very sad. My automatic reaction was, “I have to bring it otherwise I am not a good mom”. I had a bone density scan scheduled and realized that there really is no way I would be able to deliver it by noon. Of course, that did not stop me from obsessing over it until I get an email from Roger’s teacher that said he got to pick out a blanket and pillow. He chose a Lightning McQueen pillow and was no longer sad.
At the imaging center, the technician was amazed that someone my age was getting a bone density scan. I assured her that, although my age may be 41, I feel like I am 90. The rest of my afternoon was pretty uneventful and work-oriented.
Finally, it was time to pick up Roger and go to McDonald’s and gymnastics. Well, he seemed a bit lethargic when I picked him up but we proceeded to McDonald’s. He wanted his usual: fries and Dr. Pepper. When the lady in front of us was handed a chocolate-dipped ice cream cone, he added that to his order. He took a couple of tiny bites of the ice cream, about 2 fries and ignored the soda. I started the timer for 15 minutes, so we would be on time for gymnastics. Roger looks at me and tells me he is not feeling well and wants to go home. He ended up having a slight fever and fell asleep on the way home.
After getting him settled on the couch, I get a phone call from my internist with the results of my thyroid ultrasound. There seems to be a “dominant complex nodule on the right thyroid lobe”…dabbled with vascularity and fluid behind the lobe…4 x 1 x 2.5 cm. Those are the notes I scrawled down. She wants to send the results to an endocrinologist surgeon for a second opinion. She thinks the surgeon will give me another ultrasound and a fine needle biopsy. This kicked my OCD into high gear on Google.
Mentally busy day. Now, let’s rest!
Yes, I know it’s technically June 1st and not January 1st, but I feel like it’s the first day of my new year. The weather has turned from a blanket of rain to a ray of sunshine (and I’m hoping so will I)!
Today, I got on new hormones. Since I had my hysterectomy in May 2013, no doctor has seen it necessary to test my hormone levels. Well, fortunate for me, I finally made the wise decision to see an internist/PCP who ordered the bloodwork at our first appointment and gave me the information for a fabulous OB/GYN to work on my hormone levels.
Today, I found out that my FSH level is triple what it ideally should be and that my testosterone is non-existent which could account for my horrible sleep, headaches, overall fatigue, brain fog, and my high anxiety. It will take about 3 days to “kick in”. If I still get hot flashes and am still symptomatic, they will give me an extra boost. Although not covered by insurance, I am hoping this form of hormones will finally help, since the last two have not. It’ll be worth every dime.
Happy New Year to Me!
It’s almost a week into 2015. There have been huge changes in our schedule: school, exercise, alone time!
Roger has switched from a 5-day/2.5-3 hour per day school schedule to a 3-day/7-8 hour per day school schedule. It will turn into full-time once there is an opening. Roger did incredibly well the first day. However, he was yelling at me to put on loud music for our drive to Grapevine this morning. Yes, that is another change. Roger went from taking a short bus ride to having a 30+ minute car drive to school. After Thursday’s class, I will have a better feel as to how Roger is adjusting.
I, myself, am loving the time alone when I work and drive. I am sure I will get sick of the drive at some point (probably when I am feeling sick) but am currently enjoying it. His new schedule also allows for me to fit in some time for fitness too. What I have learned thus far is: I am out of shape! I am looking forward to building up my strength, energy, balance, and to regain a new, healthy life routine. I will keep you posted on how all proceeds.
Open arms to 2015!
It’s crazy that we have had such an extraordinary year. We moved to Texas in October of 2013 and used 2014 to acclimate to our new surroundings. I must admit I cried when I knew we were going to move to Texas — a state I NEVER wished to live in.
I was born in Southern California, lived in upstate NY, spent my “formative” years in South Florida, lived with roommates for a bit in Athens, GA, moved cross-country to Denver, CO (where I spent 3 years living on my own and by myself and never thought I could live any other way), moved back to FL for a bit, then Southern New Jersey and Northern New Jersey, and, finally, with my husband-to-be in Queens, NY. We had our fair share of moving: from Flushing to two different apartments in Astoria. When the economy went south, we moved to Northern California for 4.5 years. Then, for my husband’s current job, we moved to a rented house in Flower Mound, TX.
In 2014 we decided to take the plunge and buy our first house (in of all places TEXAS!!!). This move has been an incredible move for us. I *gulp* love living in Texas. The year has gotten so much better with my parents moving nearby (a 5 minute drive), visits from Roger’s Nana and Papa for Roger’s birthday and our Aunt Janet for Thanksgiving, our acquisition of health insurance for Roger that covers ABA therapy, and Roger’s acceptance (after being on the waiting list) for the Easter Seals’ Texas Star Academy.
The past few days I have been unusually happy and even-keel. I am smiling all day long. I don’t know if I’ve ingested something curious or if my state of mind has shifted. Whatever the reasoning, I will gladly take it and wish you all the happiness I currently feel.
Here’s hoping you had a fantastic 2014 and will have an even more superb 2015!
Today has been a much better day than the past few weeks. I attribute it to having some semblance of routine/normalcy. My husband had to work today, Roger had occupational therapy, we went to a few stores, and I also had to work this afternoon. He was so excited to see his sitter — I am guessing he needed as much of a break from us as we needed from him! Also, she is 20+ y younger than me, so she is full of energy. He was able to ride his truck on the greenbelt, she walked him to the playground, and she probably had to push him on the swing for at least a half an hour. Each of those tasks singularly wears me out (just thinking about it wears me out)!
I had initially planned on writing a blog about Roger’s massive mood and behavior regressions during break. However, having such a good day overall, I think it best not to mention it for the time being. I do not want to jinx myself!
I know I have not been very consistent upkeeping this blog. However, besides the shock that my last post was eight months ago, my bigger shock is how few entries I had in the whole of 2014! With a few days left of this year, let’s try to make a bigger dent in our blogging…
I briefly saw that my last post concerned feeding therapy. Well, we did not opt for inpatient therapy. Roger was becoming very upset with the way therapy was going in Grapevine. He never disliked going to OT before and we were having to cancel sessions because I could not get him into the car. So, the first big change came in the form of changing therapists and, subsequently, the approach to his feeding issues. We have gone back to the sensory approach v. behavioral. His therapist saw that he needed a lot of sensory and muscle input for him to eat and accept new textures. Roger’s diet is still incredibly limited, but we have seen so much more progress than he was making at his previous therapy.
In the past 8 months, Roger also attended ESY (extended school year) which took a bit of fighting. Unlike CA where all special ed students receive ESY, here only about 10% of special ed children receive ESY. He loved going to school, the bus ride, and the longer school day. Unfortunately, his PPCD class this year is incredibly short. In total, his classroom time ends up being less than 2 hours a day. Overall, although it is inclusive, I have not been thrilled with this year’s program.
One major, excellent change is that we obtained a health insurance policy for Roger that will cover ABA beginning January 1, 2015. This led us to re-examine various options, tour facilities, interview in-home therapists, put ourselves on waiting lists, etc. Well, it was finally our place on the waiting list and we decided the best place for Roger in 2015 is at the Easter Seals preschool. It is an inclusive classroom (10 neurotypical children and 5 neurodiverse children). He will have a BCBA overseeing his program, always making sure his goals are obtained and redefined, have ABA integrated into his full 7 hour school day. Unfortunately, they only have a part-time opening to begin, but early in 2015 it should change to a five day a week program. I hope he transitions smoothly. He has been aware that after Winter Break he will be starting a new school. I have also prepared a social story. However, his overall mood and behavior during the month of December have been so awful that I am nervous a lot can be attributed to the stress of starting a new school. I hate changes and “starting over again”, so I fully empathize with him.
December has been such a rough month and moody end of year. Here’s hoping for an easier January (and 2015 in general)!
Yesterday, during occupational therapy, Roger’s new therapist proclaimed that she believes the best approach for feeding therapy for Roger is inpatient treatment. His denial of food is mainly behavioral. At one time it may have been caused by reflux or a sensory issue, but has now it has developed into a behavior. At inpatient therapy, there would be five feeding sessions per day at 3 meals and 2 snacks, as well as other therapies sprinkled in throughout during the day. I contacted the hospital where the therapy would take place to ask how long the waiting list is, what insurance covers, and my ability to work while we live there for five weeks. The wait list, once the evaluation occurs, is 4 weeks. His evaluation is May 15th. She said they are at full capacity for the beginning of June but there are still summer openings. Insurance, if it does cover this treatment, covers it 100 percent (after deductible). And the answer to my last question was more vague — they have wi-fi.
Today, we had our first appointment with a behavioral psychologist. I was all over the place describing Roger’s behaviors, my concerns, issues in the house, etc. One area I have extreme issues with is guilt. I feel terribly guilty when I see Roger uncomfortable or frustrated in his therapies. I believe my biggest fear of inpatient feeding therapy is how uncomfortable and difficult five feeding therapies will be for Roger and how much guilt I will feel each day there. Another concern I have is that if the therapy was during the school year would the break in his daily school routine cause regression in other areas. I brought up the guilt and the feeding therapy with the psychologist. Her retort was that feeding/food/nutrition was more important. This was even prior to me listing the items Roger will eat: goldfish, pirate booty, veggie straws, oreos, freeze dried blueberries and strawberries, chocolate pop tarts, gummy bunnies, and popsicles. If we are lucky, he will consume part of an apple, french fries, pizza and potato chips (How funny it was that Rob was thrilled Roger ate potato chips…he talked about it for days)! Where does he get his protein? was the psychologist’s big question. He doesn’t intake any protein. He only intakes fat and sugar. That is why we are seeking feeding therapy. His weight is normal, but he has zero nutrition. Hearing how blunt she was about the feeding therapy and that is the most important issue for him right now (as echoed by OT) has eased my mind a bit and made the decision easier (when the time comes).
There are other issues we have: Roger will not do anything to help himself get ready for school or for bed — if I change his diaper, he will not even help pulling his pants up. We still co-sleep and I am almost a walking zombie from lack of sleep. Meltdown, being a dictator, his sad streaks, etc….
One step at a time. First, I need a nap!
I read such a great little article about autism today. I posted it to my Facebook wall, for those who are connected to me on that social media. The gist of the article was accepting autism (“Your son has classic autism. ” the Child Psychiatrist said. “There’s no cure. Anyone who tells you they ‘cured’ their child of autism didn’t have a child with autism. It’s that plain.” And instead of sadness, I felt relief.)
Roger, too, was diagnosed with classic autism. Since he speaks and seems intelligent/manipulative, most people would not understand that why he would receive that diagnosis. It is evident not only in the flapping hands/constant spinning/pummeling his full body into the wall or couch or me, but also nuanced behavior with his diversion of looking at you when he is actually speaking, him slightly moving his body in such a way as to direct his back towards you, tensing his hands when trying to hold his hand without giving proper notice, the discomfort in his face when he puts food in his mouth, etc.
The issues that have arisen have been what is the autism and what are behaviors that need to be changed for all of our sakes? I admit that I have given Roger more leeway based on the fact that he has always had to work so much harder than other children, had a 20 hour therapy/work week starting at 18 months old. When he began finally using his words via signing or speaking, we used positive reinforcement in allowing him to receive anything he would request. This is backfiring now. We started co-sleeping with Roger around the 13 month mark and it helped him to bond with us more even when he was starting to withdraw. This is backfiring for me now, since he thinks his bedroom is our bedroom and daddy’s bedroom is the master bedroom. I am starting to need my own space. And Rob and I need our space together.
His occupational therapist asked if we were seeing a psychologist or behaviorist to help with his behavior issues. I had not told her about the above issues — she questioned based solely on the behaviors she observed during therapy. I have gone to a psychologist and had visits with a parent trainer. Both had opposing views of how to deal with everything which added more inner conflict. I was not impressed with either, so I should expand my search for a private behaviorist (not through LISD) and/or another psychologist.
So many things I want to do to help us all, I just don’t know where or how to begin and where I would find the time! I know I will find the time…I always do.
Since I blogged last week about therapy fails, I wanted to update you on how this week’s therapies have been thus far. I did call Baylor on Friday to change therapists, but OT (at all their facilities) have waiting lists for afternoon sessions. I was quite nervous to see how Roger would react to going to Occupational Therapy on Monday. He noted that Jonathan would not be there but that he would be seeing Janythe (his speech therapist). I told him that speech was later in the week and that he would only be going to OT. He did not seem upset. Upon arrival, there was a marked difference in his therapist’s demeanor. She was much more doting/smiling/personable. She gave more positive reinforcement. I am hoping tomorrow’s session will mimic yesterday’s!
Play therapy was pretty identical to last week’s session. Roger is stuck in his preschooler ways and Miss Janecek is no longer a stranger he needs to impress. Next week is our final session with Miss Janecek. However, Dr. Harrier did email me about trying to coordinate a structured play with one or two other children to teach Roger to play with other kids. He only wants to play with other kids if he is in control. Also, he has a tendency to turn his back on others while playing — to shut them out. I am hoping we can arrange a multi-child play therapy for the summer.
Another item I am trying to arrange for the summer (in addition to the possibility of feeding therapy) is private swim lessons for Roger. He gets too easily distracted to attend a class with other children. I think private lessons would be a much better arrangement for him and allow him to focus better. Additionally, I wrote a classified ad to for our HOA’s newsletter to gauge if there is interest in an ASD parent/family support group. I am hoping to have some feedback from the ad! Another possible title on my radar is Directory Editor for SEPTSA (PTA for special needs children for Lewisville Independent School District). And, I have been in touch with the PTA for Roger’s new PPCD school, which will also be his elementary school. I am excited to be more involved in his school next year and in the school district!
This weekend was one of the best, family-filled weekends we have had in a long time. Friday was a holiday for a lot of people, so Roger got to play at the neighbor’s house before I had to work. Rob got home early from work and was able to bring Roger to another neighbor’s house after making some yummy chocolate chip cookies. Not having vinegar and only using water led to a bit of an easter egg coloring fail.
Saturday was busy and fun. After a restless night of sleep, we had a lazy morning before heading out to the All Kids Count Fair. It was absolutely amazing. Next year, when Roger is a little older, he will appreciate some of the tables for craft-making, face painting, etc. However, in the meantime, he loved the music and dance floor. It was difficult getting him to explore outdoors. A tractor ride is what got him excited to leave the indoors. Unfortunately, Roger had no interest in seeing the petting zoo or the horses or taking a pony ride. Eventually, he enjoyed the bounce house obstacle course and the playground. He also was able to meet the Superheroes!
After the fair, we headed to a first birthday party in Plano. It took Roger a long time to warm up. He was overwhelmed and wanted to play with one particular truck for the first half hour or so (another little boy wanted the same toy, so there was a bit of stress). When it was time for the birthday boy’s cake, Roger was so excited and had to be right next to the birthday boy. He laughed uncontrollably at the smash cake. After the cake, the party thinned out and that is when Roger got more comfortable playing with other kids. Lucky Roger also got to have dinner at McDonald’s and met other “friends” to play with that evening.
Sunday was a very lazy morning again. The easter bunny visited! After Roger found all the eggs, he got a nice basketful of toys! My husband made a delicious breakfast and we enjoyed it on our patio sipping mimosas. After breakfast, we all did yard work. Roger loved helping through away weeds! The day proceeded with his social skills playgroup and another trek to McDonald’s in the pouring rain.
Last night we all slept soundly and did not want to wake up for school/work this morning: signs of a perfect weekend!
Since Roger did not have school today, I was able to schedule an early morning play date before I had to work. It’s interesting when therapists tell me that in his play and speech, Roger acts like a pretty typical toddler. Then I remember that these specific therapists only work with developmentally delayed children and do not have kids of their own. They seem so assured that he is playing appropriately and speaking appropriately for his age. I am doubting they have viewed him playing with “typical” toddler-aged children.
The difference is glaring. Roger remains pretty much by himself and usually does not play with the toys as they are meant to be played with. He will pick up motorcycles and fire engines and inspect them/spin the wheels. If you encourage him to put his car on a track, he physically has to move his car all the way around the track. He will not push and let go of the vehicle. He still is unable to do a back and forth tossing of a ball, kick of a ball, or any other type of back and forth play. He is nearly four and still remains playing with one toy for 30 seconds before moving to the next. He does not stay on task. In theory, he could play with cars for hours if that involved just removing cars from a box and staring at them one by one. In therapy and in those type of structured settings, Roger does perform the way they want him to, as a “typical” toddler. He does not generalize his skills — typical trait of autism.
He wants to have play dates and likes the idea of meeting new friends at the playground or McDonald’s. Hee usually attracts younger kids since he plays more like they do. However, he usually likes to follow the older children who take notice that he is “different” and usually ask me why he is doing what he is doing or saying what he is saying. I am glad he does not understand the questioning right now because making friends is so much fun for him. He goes up to them, unusually close of course, waves and screams hi at them until they respond. He introduces himself and tells them it is nice to meet them, even if he attends school with them daily. Most parents and therapists find this all very endearing and it is, especially now that he is 3. It is obvious that this is echolalia and probably will not be seen as so cute at 10, 14,16, etc. We will continue having play dates, going to playgrounds, attending social skills playgroups, etc. As long as he is happy doing so, I am happy bringing him wherever I can!
Although not even four years old, Roger has spent over 2 years in various therapies. While in early intervention, there were always high and low points in a cycle…like a repetitious bell curve. The low points always seemed to last longer than the high points. Of course, that is probably not true. When there are constant meltdowns involved, time tends to move slower than during times of giggles and joy.
Since beginning preschool (and even the move to Texas), the curve has not seemed as dramatic as the bell curve. There have been times of sadness and bad moods, but not really times of screaming and crying during therapies. As noted in yesterday’s blog, Roger did not fare well in play therapy and he has a new occupational therapist. Although Monday’s OT session was more tense than it had previously been with his other therapist, there were no huge meltdown moments. There were some NO’s here and there, but that was all. Tuesday’s play therapy did have a 15-20 minute freeze time where all playing ceased and Roger kept whining and/or yelling. Well, today was his second session with his new occupational therapist and it was as tense as the first session. The therapist just as abrasive; she does not smile or seem in the least bit happy. It is strange that there are people who choose to work in pediatric fields that do not seem warm towards children. This lady is one of them. She seems like a good therapist for an adult or a child older than toddler age. His therapy session put him in complete meltdown mode by the time he had speech therapy. Unlike his occupational therapist, his speech therapist is very sweet with Roger and very jovial. However, two-thirds of the therapy was spent with Roger yelling that he did not want to play and he did not want to go to Grapevine again (that is where therapy is and what we call going to therapy); he wanted to home time. I felt bad that she received the brunt of his anger/despair/frustration.
I am feeling the occupational therapist is not a good fit for Roger. She wants to begin working on food therapy next week. He hardly wants to do tasks he enjoys with her. I think adding food to the mix is a bad choice and could only backfire into retreating from food even more. How long should one wait to see if a connection grows? How much time should I give before requesting a new therapist or traveling much further to where his old therapist is now located?
Despite the therapy woes, today was not an overall bad day. We had Roger’s Extended School Year ARD which went extremely well. Also, post-therapy, Roger and I enjoyed our neighborhood playground.
This little man is so amazing that it hurts my heart to see him so upset with a therapist who seems only goal-oriented and not well-being oriented. It was quite a contrast to a phone call I later received from his school occupational therapist who said he is progressing so much since November. More importantly, she sounded so full of love and hope describing how much she enjoyed working with Roger and how much fun he they have in therapy. Although I could not see her face smile, I could hear her voice smile. That makes all the difference in the world.