Saturday, November 15, 2014

It's been awhile...

Hello everyone!

     WOW!  I cannot believe it has been 6 months since my last blog post!  A lot has been going on, some good, some bad, some just normal.  Where to start?  I guess I will pick it up from where I left off and hope y'all don't mind my being long winded.
     Risperdal was working great for Monkey, he was sleeping in his own room, his anxiety was way down and then BAM!  It was like getting kicked in the stomach, he got out of the shower one morning and came to me crying "Mama, I have boobs, I'm a girl now".  My heart broke as I hugged him and then looked at his chest, he was indeed growing breasts!  So, I called the psych immediately who said "Let's lower his does and see if it goes away."  Lowering his dose did NOT change a thing except his anxieties starting to return.  We decided to wean him off of the risperdal entirely, and his little body is slowly returning to normal.  Of course his anxieties have returned full force, as has his rocking and waking frequently along with his needing to be with me constantly.
     Monkey has started 4th grade and it has NOT been a good year for him.  Our school uses the K12 platform and it is anything but reliable.  Due to changes in the Florida State Testing, K12 had to redo all of our math, and language arts text and work books and were unable to complete them in time so we get a few units at a time which is very frustrating on its own and even more so when the site is often down.  Monkey who always had math come easy to him is struggling and often cries while working, he will have a complete meltdown and yell at me and throw his book, it is heartbreaking to see him so very upset over one subject simply because some politician decided to change how our kids should do math.  I still am completely baffled as to why anyone would want to change math and honestly feel that it put our kiddos at a disadvantage.  Monkey is also struggling with writing, poetry and understanding similes and idioms, these things do NOT make sense in his mind, and I find it baffling that they are trying to force him to fit into their round hole.  I have made the decision that next year I am going to pull him from our current school and enroll him in FL Virtual Home Based program.  No, he won't receive a traditional diploma when he graduates, but he will have the peace of mind that he so greatly deserves.  I want him to enjoy learning again, and to actually learn and not just parrot back what he can remember.  I feel good about this decision but also worry just how it will all work out.  I am hoping their platform is better than K12's because 100% of the lessons are online, there are NO books whatsoever, so if the site is down, we will not be able to work at all.
     With the holidays coming and hubby still looking for work I have been SUPER stressed about Christmas and then a couple of days ago, my oven decided it didn't want to work anymore!  I have signed us up for every toy giveaway I could think of, and am searching for either a used stove or the part we need at a reasonable price!  The Autism community has been so supportive to me and my family during these trying times and several people have offered to help with gifts for my awesome little boy and I cannot express just how blessed that makes me feel.
     I am also doing a fundraiser through http://www.kulturecity.org/ called Wizard Talk.  Wizard talk is amazing! People who donate to Monkey's fundraiser https://www.classy.org/fundraise?fcid=364623 not only help him to receive an iPad mini, BUT, each time a person rasises $300 for their child, kulturecity donates a second iPad to a family with an autistic child!  The donation is also tax deductible and each donor receives an email that includes kulturcity Federal Tax ID number!
     I have also been blessed to receive help from ROCK THAT AUSOME, so if you donate even just $1.00 to my fundraiser, then like their page and let them know that you donated you will entered into a giveaway for a weighted lap pad, a weighted animal AND an autism bracelet!  Pretty awesome for just donating $1.00 to help an awesome little boy, and a great cause!
     I just want to thank you all for continuing to support me and my amazing Monkey, for allowing me to vent, and for not abandoning me while I figured some stuff out and had my page unpublished.


Friday, May 2, 2014

Counselors, Psychiatrists, meds, sleepless nights, OH MY!

     It has been awhile since I posted, it's hard to keep up with this because I am also keeping a med log and notes on Monkey's behavior and sleep patterns for the Dr.'s as well as for myself.  This post will be about our struggles with counselor's who do not keep appointments, meds that just don't work, finding the right behavioral center/psychiatrist/therapists, Monkey's anxiety, our sleepless nights and how we are trying to deal with it all.
     As many of you know, we were going to SunCoast Mental Health Center for children.  Our experience was not a good one.  Our first counselor quit her job after our first meeting with her, and we didn't find out until I called her because she was 30 minutes late to our meeting.  Of course this schedule change did not go over well with Monkey who took it personally and spent the rest of day very emotional and feeling out of place and anxious.  The policy at SunCoast is that a counselor must meet with a child a minimum of 4 times before a referral to psych for meds can be made.  So, we got another counselor through SunCoast.  This one seemed to be really engaged and very nice.  Unfortunately, after the second visit, she called to cancel our session 15 minutes before she was due at our home.  She did this 3 times in a row, so we called the center and told them we didn't want her anymore.  While all of this was going on, Monkey was put on Prozac and Clonodine by his neurologist, well the Prozac after a week of working didn't work anymore, and an increase in the dose, made him very depressed, and the Clonodine lowered his blood pressure to much so the neurologist made a referral for psych.  So, we informed the program director of SunCoast that Monkey needed to see psych and we had a referral.  He said "We only accept referrals from our counselors."  My husband then got very angry, there was talk of suing the program and Monkey had an appointment for the next day with the psych.  When we arrived at the office we were informed that he would see the psych nurse practitioner and that this is standard...She took him off of the clonodine entirely and put him on imiprimine, which made him very depressed.  When I called the center to speak to the nurse, I got her secretary who told me that it would not be possible for me to talk to the nurse, but that she would call her...Long story short, we cut SunCoast loose, and are now going to Legacy Behavioral.  They are AMAZING!
     So, we met with the psych at Legacy on Monday and he put Monkey on Zoloft and Ativan.  Monkey was wide awake at 2am on the first night, so I made a call the next day to the office.  The psychiatrist called me back in a reasonable amount of time and we decided to increase his Aitvan dose at night.  Tuesday night Monkey was up until 7am!  The psychiatrist called to check on him, and I told him that he didn't go to sleep until 7am and he immediately made an appointment for Tuesday (he isn't in town) to change meds and said to increase the dose of Ativan until then.  He promised me that we would figure it all out, and just generally showed that he cared.
     Monkey's anxiety is pretty severe, he shakes, he cries, he heart races, he feels like he is in a dream and things are moving away from him.  I have anxiety and I know how hard it can be for me to cope with it, I can only imagine how it would feel to be 9 years old and have that kind of fear inside.  It breaks my heart for him.  So, we spend lots of cuddling, talking about how it will get better, and some days we watch the sunset and rise, and hope that it will get better sooner than later. 
     Those of you reading this who do not believe in medication for kids, please don't judge those of who choose that route, this journey is different for all of us, and I am just trying to get some relief for my Monkey boy, I just want him to be able to sleep at night, calmly and without fear.  Our ultimate goal is to have him not need medication and we are hoping that with therapy this will happen.  The road is long, but we walk it together, and love one another and have faith for the future.
     Those of you reading this, who have been on this journey with me from the beginning, I thank you for reading what I post, for following us on facebook and for always reminding me, that we are not alone and that together we can overcome anything!  Thanks to all of the people who sit up at night and listen when I need to talk!  Thank you to my husband who goes to every appointment, listens to my fears and reminds me daily that I am a great mom, and that I am doing all I can. 
     Thanks for listening and remember, DIFFERENT NOT LESS!  If I have left anything out, please forgive me, and call my attention to it, I will gladly add on!  If you have questions or just want to talk, leave a comment or find me on facebook.  Remember always that you are NOT alone.

Sunday, March 30, 2014

Meds, bedtime and meltdowns

     Hi everyone, it's been a while since I've posted.  Monkey finally got in to see the neurologist, and is now on Clonodine and Prozac.  The Clonodine helps him to feel tired and the Prozac helps with his nightly anxiety.  Monkey has never been good at sleeping through the night, he has nightmares, and tons of anxiety about people breaking into the house and hurting him and/or us.  This has never happened but has been a fear of his for a very long time. 
    He had an MRI and EEG done and thankfully both came back normal!  Yet, the anxiety remains and causes him to have emotional meltdowns, because he is so afraid and frustrated.  You see, he knows that there is no basis for his fear, yet the fear remains.  He does okay when he first goes to bed because we are still awake, but the second the noise from the living room is gone, he is wide awake and afraid.  He feels like we are leaving him when we go to sleep and he is left unprotected, I can only imagine the strength of his fear, I can see it in his eyes and feel it when he holds me so close, it's as if he is trying to melt into me, to escape the fear.  I have no idea how to make it better, the meds are helping, but they only take the edge off and make him so tired that even the fear cannot keep him awake.  I'm not sure if this is the right way to go, I often feel like a failure because I cannot fix him.
     Last night was the first night of his new routine.  Bedtime is now 9pm with lights out at 10pm, and we mean lights out.  Bedtime used to be 10pm with "lights out" at 11pm but he was keeping his bedside lamp on all night, and we stopped that.  The meltdown before bedtime was epic!  Refusal to shower, brush teeth, put on PJ's and even refusal to watch TV to settle himself.  He wanted NO part of this new routine, but he pulled it together and ended up with lights out at 11pm anyway, of course he got up twice more which made our movie night end at 3am (so much for going to bed early).  As soon as the TV went off, he was up and crying uncontrollably, clinging to me and hugging me hard.  I let him sleep in my room, and he fell asleep pretty quickly.
     People often say "Why do you let him get away with that?"  There is no answer that I can give a parent of an NT child who does not understand what my ASD child is going through.  They don't understand that he isn't misbehaving, that he hates the anxiety, the emotions he can't put into words, the constant belief that others are better than him because they don't feel or think like him.  No matter how I try to explain that I am not "letting him get away" with anything, but simply doing the best I can to make my sweet boy feel as important, special and safe as possible.  As parents, we all do our best to raise caring, productive kids.  Special needs parents, in my opinion, question whether we are doing the right thing, a whole lot more.  We have to decided what therapies, medications, methodologies, routines, schools, play groups, friends, will be best.  I often feel alone, like I am on an island and no can or wants to reach me.  We no longer get invited to birthday parties, play dates, museum trips with friends, etc..., it's very isolating.  People don't understand that Monkey isn't mean or aloof, he doesn't understand how to play with other kids, unless it is video games and even then if the other kiddo isn't playing "right", he melts down...Sometimes, he wants friends, people to play and talk with, but he doesn't know how to enter their world, and he hasn't found anyone who is willing to deal with this for any length of time.  Even the little girl across the street has started to call on him less and less. 
     I guess, while the medication can help him sleep and somewhat and sometimes eases his nighttime anxiety, we haven't hit on anything that can help him connect with people outside of his immediate circle.  I am hoping that OT and Behavioral Therapy will help him and me in those areas.
     I'm sorry that I babbled throughout this post, I guess I needed to get some stuff off of my chest, I feel better now and hope I haven't bored you too tears.  While I know that there are many of you out there who know exactly where I am coming from, when you don't actually see people face to face, and are basically alone aside from your Monkey's and hubby life can feel pretty lonely.  Don't get me wrong, I love my life and wouldn't trade Monkey or anything about him for the world.  Okay, I am done ranting for now, if you have stuck with me this far, I thank you from the bottom of my heart.  If you're new, I hope you get something out of my rambling that makes you feel less alone.  I always remind myself, that I am not really alone, I have many friends on social media who are there to listen and they always do.  They have my back when I feel like I am losing my mind and honestly, virtual hugs are pretty damned good when you're down, and lonely and don't know what you're doing.  I hope this post helps others in some way, I know that writing this blog definitely helps me.

Wednesday, January 29, 2014

The final diagnosis

     Well, yesterday we had our eligibility meeting with the school district.  We all knew what was coming and I really thought I had prepared myself and was good with everything.  They said that my precious Monkey Boy is autistic, and I felt like someone had punched me in the stomach.  I cried and asked "what did I do wrong?"  I keep coming back to that, I must have done something to make him this way, I have failed him.  Then I think, how could I have failed him when he is so absolutely amazing?
     Monkey Boy feels that he is abnormal, and needs to be fixed.  I keep telling him that he isn't broken, that he is perfectly, perfect just as he is and I wouldn't want him any other way.  After all, if I were to change his autism, I would change who he is at his core and that would destroy me!  I LOVE his personality, his quirkiness, his silliness, his enjoyment in the little things.
     Our next step is an IEP meeting in 2 weeks, and then setting up OT, which I think will be amazing for him and us!  We already have family counseling, and his dad I will be starting individual counseling soon.  Monkey isn't comfortable with individual counseling yet, so we are sticking to family for now.  So far counseling has been amazing and the counselor is even willing to come to the house!  We are going to be looking into getting Monkey a weighted blanket and see if that helps him to sleep in his room throughout the night.  We are also going to look into medication to help with his anxiety and sleep problems.  We are ready to start this journey and help him make all of his dreams come true.
     I just wonder how many other moms and/or dads had the initial feeling that they somehow were to blame, and had in some way failed their child(ren)?  How did you deal with it?
     I'm sorry that this blog is so short, I am just feeling really overwhelmed and trying to sort it all out, and not let Monkey Boy see me sweat.  That is a HUGE thing, if he sees that I am upset, then he will be upset and that is the last thing I want.


Thanks again for joining me on this journey, as always I am extremely grateful for your input and support!

Friday, January 3, 2014

ASD, illness, Christmas and a birthday!

     Is it just me or do kiddos with ASD have an especially difficult time coping with any kind of illness?  Monkey doesn't like the way his clothes, blankets, water, food, or ANYTHING feels when he is ill.  It has been just about a week now, and I am also ill and dealing with on and off migraines.  Trying to make an amazing Christmas, and Birthday (Jan 2) for him was challenging to say the least!  Christmas went off without much of a hitch, of course there were several melt downs and of course he slept in our room every night.  We got through it though, and that is what counts! 
     Honestly, without his amazing dad, I don't know if I would have made it!  He helped with cooking, laundry, cleaned the ENTIRE house himself, and put up with my attitude, which was NOT pretty!  After all, I am only human and I get frustrated and overwhelmed too.  My husband honestly is amazing and deserves some kind of trophy for all he does!
     So, his birthday was yesterday, Jan. 2nd...We invited his BFF, his BFF's mom, who just happens to be my BFF and her daughter.  I suggested to him that we invite my really close friend and her 2 kids and that produced a melt down.  Why?  I'm not really sure other than he felt that was just too many people for him to deal with.  He wasn't in a great mood between his cold and there being a lot going on for him.  He was great right up until shower time and then the melt down began..."Why are you being mean, I had a rough day?..."Monkey, it's time to wash up and get ready for sleepy's"..."NO!"  "I'm not going to sleep!" "yes you are going to sleep, you need sleep to grow", "I don't want to grow, I want to be little forever!", followed by hugs, a discussion about how I will ALWAYS be there for him, and he has nothing to worry about, he has a long time before being a grown up and doesn't HAVE to move out or away.  Finally, he is ready for bed.  My loving husband made a rookie mistake and said "Is there any point in you even attempting to sleep in your own room?"...Monkey:  "No, there isn't I need your room."  Really?  I mean, is he new??  We haven't been alone now, in about a month..So, Monkey sleeps in our room, by the way he was asleep in 15 minutes!
     He goes back to school on Tuesday, and is already unhappy about it, and wants more time off, no desire to start again, have I mentioned that I HATE vacations that are longer than 4 days?!?!?!  So, I am trying to ease into it.  He is still taking Children's Nyquil at bed time, and thankfully isn't up every 10 minutes.  So, moms and dads, how was your holiday vacation?  Any illness?  How did your Monkey's cope with guests, going to others houses or just the holiday business in general?  I for one, am glad that another holiday season is behind us, and Summer vacation is around the corner!