Single Moms Raising Autistic Sons


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Monday, September 03, 2012

Uncle Charlie is Alive Thank God!!!!! Tae Kwan Do


Griffin and his Uncle Charlie in the hospital yesterday, Charlie is lucky to be alive and we are so grateful that he is because he had a horrible motorcycle accident. Actually it was a small scooter and he had a helmet on thank God and his neck and head were not harmed but both his legs were broken and both his wrists were too so he can't use his hands but maybe his fingertips. He also has broken ribs so altogether he is in a lot of pain. They put those rods in his legs, those kinds that are on the outside of the body that are sticking up and go circle around the leg then go into the leg and boy do they look painful.

He said that the doctor said that he would get out in two weeks but then he couldn't use a wheelchair because he couldn't push himself due to his broken wrists so I guess he would use an electric one or have someone push him. The nurse said that he would go into rehab since he has no one at home to care for him. Griffin is really close to Charlie and used to spend a lot of time with him, he acted out at the hospital because of the environment and possibly because it bothered him to see Charlie like that even though when I later talked to Griffin he didn't say so. It could be that Griffin just doesn't know how to verbalize his emotions about it or maybe it could be that he just became impatient at the hospital and got antsy because I made him wait too long and I am making too much of this.

I think that I will take him back one more time for a short visit to see if it bothers him because initially he did seem happy to see Uncle Charlie and he did talk to him as he gave his Get Well Soon card to him that he had made that is pictured here in the photo. It has Perry the platypus from Phineaus and Ferb, Mordicai, the Blue Jay is from the "The Regular Show", and Cookie Monster on it. If after a few minutes he is impatient and showing signs of being uncomfortable then I will know that it is not okay to bring him back, then we will have to wait until Charlie is in rehab healing in a wheelchair looking more like a regular human and not so scary for a youngster who doesn't understand exactly what is going on.

It was so good to see Charlie after not seeing him for over a year's time and I was so glad that he was okay and in one piece even though he was really beaten up. So grateful that he is alive!

I give thanks to Spirit that is great and generous to us all giving us life and sparing us when we think that we might not make it. You may call this Spirit "God" and it doesn't really matter but either way I give thanks that my Aunt Patty is doing well and my Aunt Gail is talking, and that my cousin Charlie is alive. I give thanks that Griffin and I have our health and are safe each and every day and that my family is safe and has access to the health care that they need for their continued progress. I am surrounded by love and I sometimes take it for granted but at night I say my prayers and give thanks. I try to not beat myself up for not being perfect but at the same time I strive to be the best that I can be for Griffin for his future but I must remember that I have to be in his present. And the only way that I can do that is to make mistakes and to be human and to let him know that it is okay, to move on, and to apologize. We make up and snuggle, he is such a loving and forgiving child...........one more thing to be grateful for!

This is at Tae Kwan Do class (Karate) Saturday, the first one for Griffin ever, it really was a test run to see if he liked it. He kind of participated but mostly just stood there and watched, I stood behind him for awhile to help him but the instructor helped him out most of the time. The class was ahead of him since they had been there months ahead of him, Griffin tried 2 moves and got them without getting upset.....YEAH! But when it came to time to wait on the side of the mat sitting while the other kids did their thing, he sat so patiently I was so proud of him. He had a great first class even the instructor said so, he explained that Griffin was exactly where he expected him to be at this point and that most kids don't participate until sometimes 6 weeks into classes.

Special Olympics is supposed to start on the 15th so I don't know if we are going to continue with Tae Kwan Do, it will be bowling and I am so excited for Griffin. I think that he is going to love it!



Thursday, August 30, 2012

Awake at 4:00 a.m.




Griffin and I got up at 4:00 a.m. which means that I must be giving him his sleep meds too early and putting him to bed too early so that is going to change tonight! But we did get in some quality time together before the bus came which was nice. Griffin and I spent time reading books together and he spent time on the computer of course. He has been complaining about having a frog in his throat and kind of clearing it and according to his description it hurts but I took him to the doctor and she said that it's not strep and that as long as he doesn't have a fever that he is okay. So I tried to explain to him that he would be okay and help him to not worry about it and by the time he left he was okay about it.

I found a website Nancy's Bird Photo Journal  and it has all kinds of birds and photos of every one. Since Griffin is a great bird lover it is a wonderful source of information for him especially since we are birdwatchers when we go out. He loves the ducks and since there are different kinds there, it is nice to have a place to look up what types they are. I think that Griffin's love for wildlife is going to take him places as he grows older.

I just included these photos that I had leftover from the lake because I wanted to use them before I take some more this weekend. I really like these and am kind of proud of how they turned out, especially since the camera is as old as it is. I am experimenting with it and trying to see how I can get some better pictures out of it.

I am always open to feedback on my photos.......feel free to comment on anything!

Sunday, August 26, 2012

Friday, August 24, 2012

Genius May Be an Abnormality by Temple Grandin

http://www.autismtoday.com/articles/Genius_May_Be_Abnormality.htmhttp://www.autismtoday.com/articles/Genius_May_Be_Abnormality.htm

Temple Grandin has written this wonderful article about genius, Aspergers, and autism. Here is a sample of the first paragraph of a very detailed article that I highly recommend:

I am becoming increasingly concerned that intellectually gifted children are being denied opportunities because they are being labeled either Asperger's or high functioning autism. Within the last year I have talked to several parents, and I was disturbed by what they said. One mother called me and was very upset that her six-year-old son had Asperger's. She then went on to tell me that his IQ was 150. I replied that before people knew about Asperger's Syndrome, their child would have received a very positive label of intellectually gifted.

Then she goes on with continuum of traits, genius is an abnormality?, types of thinking, and teachers and mentors.


Below is something that I discovered on Facebook that I am fond of that I hope that you can find something valuable in to take with you.



Wednesday, August 22, 2012

Pre-teen and Growing Up

Griffin is being reminded by people that the hair on his legs is growing longer and that he is getting a mustache and I don't know if they are talking to him about it in school but he has been obsessing over this pre-teen growing up and getting older issue so we have been talking a lot about it. He told me that he is afraid of growing up, getting old, and dying. He told me that he knows that I am going to be an old lady "soon"; I am 48 but to him that is ancient, and the poor guy has reason to worry because I am not Spring chicken but I did not let him think that I was going to kick the bucket anytime soon. I did my best to get him excited about growing older and told him that great things happen when you grow up like learning to ride a bike, like going to college, getting a job, learning to drive a car.....he may or may not do all of these things but I certainly want him to dream big. I want him to aspire to do these things to strive to achieve all that he could possibly conquer in spite of his autism. In fact, I think that he could use his autism to his advantage especially through his art and with the computers. But I digress......

I want Griffin to feel comfortable growing up especially since I think that he is about to hit puberty, he is exhibiting signs of hormonal changes now with his moods and other behaviors. We are going to see a psychologist now who I really like and I trust that he will lead us in the right direction.

I have been staying busy, busier than I realized I would since Griffin started school. I think that I am going to start doing my photography again. I went to the lake and took some photos yesterday and I must say that they came out pretty good. They camera is old and is limited but that's okay I can work with it for now.


Tuesday, August 21, 2012

Seeing Beyond My Autism Diagnosis

Seeing Beyond My Autism Diagnosis

This is an excellent article by Judy Endow who so intelligently inquired, "are you a low functioning NT or a high functioning NT?". Think about how we label one another especially those who are "disabled".

I highly recommend this article.....read on.

Tuesday, August 14, 2012

How to Prevent Common Childhood Injuries

Here are some great tips that you may already know as the fantastic parent that you are but it never hurts to have reminders. Take a look just for a quick brush up....and you can always pass it on. This was shared by Nancy Parker. The website is Nanny Source, I have to say that I do not have experience with them personally but I do like their articles.

http://www.enannysource.com/blog/index.php/2012/08/13/steps-nannies-can-take-to-prevent-common-childhood-injuries/

Griffin loves his "scribble pad" or as you may know it as a Doodle Pro. He doesn't go anywhere without it and is constantly drawing on it. He goes to "meet the teacher" tomorrow and I think that he is excited, I know that he is excited to start school Thursday. I will miss having him around to hang out with although it will be nice to know that he will not be so bored and looking for things to do all day long, even though he has plenty to do. Not looking forward to homework but maybe the new system that I have in mind will work....fingers crossed. Griffin has a hard time sitting still for anything ADHD, and it creates a challenge especially for reading and homework. So there will be more to be written on the subject in the future.

My Aunt Patty still needs prayers as we are hoping for her recovery, she is still in the hospital. My time is up on the computer, Griffin has reminded me....time to go.



Monday, August 13, 2012

Ten Commandments for Interacting With Kids On The Autism Spectrum

Ten Commandments for Interacting With Kids On The Autism Spectrum...

1. Thou shall not yell when speaking to me.
My disability does not impair my hearing and I am extremely bright. Perhaps even brighter than you are.

2. Thou shall not ignore me, talk negatively about me, speak unnaturally slow, or ask questions to others in the room that pertain to me. I can comprehend what you are saying just f
ine.

3. Thou shall believe in me and help me believe in my skills and self worth. Note the good in me and do not merely point out my negative behaviors. Believe in me and I will believe in myself.

4. Thou shall not perceive me as dumb.
I am extremely intelligent. I do not learn in the same way as you, and maybe not as quickly as you expect me to. Have patience with me. Once I recall information, I never forget.

5. Thou shall not judge my behavior.
I can get overstimulated in certain environments. I may be hypersensitive to sound and loud noises may hurt my ears. Fluorescent lights are distracting for me. They have a humming noise, and can pulsate. All the noises in a room can blur together. Please make accommodations to help me.

6. Thou shall not be so quick to scold me.
Do not tell me that “I know what I did”. I do not. Tell me what my infraction was in a simple, concise manner. I want to please you, but I have difficulties inferring meaning within a vague statement. For instance, do not say please clean up your bedroom. Tell me exactly what you want, such as ‘Please make your bed and pick up your toys”.

7. Thou shall not compare me to others.
Please remind me, and note the talents that I possess. This increases my confidence and positive self worth. Learning disabled or not, we ALL have talents to contribute within society. I need you to help me realize what mine is. Believe in me and I will believe in myself.

8. Thou shall not exclude me from activities.
Please do not mimic me, ignore me, or bully me. Please invite me to play with you. It hurts my feelings when I am excluded. I like to run and jump in the playground, and be invited to birthday parties too. Grownups can help me make friends by encouraging other children to play with me. I can be a loyal friend if you get to
know me.

9. Thou shall give me choices.
I do not like being ordered about any more than the other children. Give me choices so I know you value my capabilities and opinions. Make them simple and concise. Present two options or so. I get confused when too many questions or directions are given at one time due to my processing speed. For instance, ask me if I would like to wear my blue sweater or green one, rather than asking which sweater I would like to wear.

10. Thou shall not judge me by my diagnosis, but by my character.
I am an individual, just like other children. As my son used to say, “Mom my name is John (name changed for his anonymity) not Asperger’s”. A profound statement I would say. :-0)

~ Mari Nosal


I do not claim to obey all these commandments each day as I am not perfect nor do I try to judge anyone who does not follow them either. All I do is to wish for each of us to have kindness and compassion and to give our efforts to do what is best for our children.

Saturday, August 11, 2012

Single Moms Raising Autistic Sons

Griffin and I are just hanging out today but I am staying busy cleaning and doing important paperwork that is long overdue. I am waiting for a phone call from my cousin about my aunt who just got out of ICU thank God! I am hoping that soon I will be able to talk to her, that she will feel well enough to say hello. Griffin and I are going to make a card for her and some other crafts while we are at it since we will be staying home today and it is raining outside.

The Facebook page above links to Single Moms Raising Autistic Sons which I am the administrator of and would love it if you visit me there and share your stories and do some social networking. I go to Facebook every day and check out what my friends are doing and if there are any new people there with something to share.

Wednesday, August 08, 2012

Self-Care

This is one of Griffin's most imaginative sock puppets that he made yesterday just from some paper and with a glue stick but I cannot for the life of me remember his name and Griffin is still asleep. Me and my poor memory, I just turned 48 years old and my memory is more like that of a 98 year old in poor health. I must not be reading enough.

Griffin and I went to a Family Support Network meeting last night and it is sad to say or good, depending on how one views it, that it was the first one that we had been to. I think that I had been apprehensive to go in the past because of Griffin and the childcare there that I had anticipated and sure enough he ended up coming downstairs with the adults and interrupting the meeting to a certain extent towards the end because for whatever reason they could not hold his attention in the kids class. I did at least talk him out of going home early and got to stay the entire time so I did give him big kudos for his patience for waiting for mom and using his "scribble pad" (doodle pro). He got extra computer time when he got home before bedtime.

I am not at liberty to discuss in detail what we discussed what happened at our group due to an agreement that I signed but I can say that our topic was self-care and personally for me my self-care is very limited. Due to my Fibromyalgia, Bipolar Disorder, and the problems that I have with pain in my, feet from surgery in my right foot and the need for surgery in my left foot, I have limited mobility and get depressed and feel guilty about not doing much with Griffin. And when I do push myself to do things I end up paying for them and by being on the couch for the rest of the day or the next day totally useless. Good thing I have a darn good psychologist who I include as part of my self-care.

To me self-care is reading a book or watching my science shows on TV, reading my friend's blogs and getting on Facebook. I gave up on lingering in the shower a long time ago since Griffin finds ways to interrupt them....what the heck, they are over rated! One day I will take baths again when we move to a place that has a nice bathtub. With Fibro self-care means getting enough sleep and rest or else I am totally useless to myself and especially to Griffin so I faithfully take my sleep medication and I rest on the couch during the day if necessary. My body hurts all over and I have overwhelming fatigue. I try to swim when I can which helps too and when Griffin goes back to school I plan to do it more often. It is hard to get motivated when it hurts all over and all one wants to do is sleep but once over the hump it feels good.

Now, I told my friend Jennifer, all I need to do is to socialize! How the heck do I do that? I feel so awkward, I have no self-confidence, it's been over 10 years since I have in a social setting with a man and I just don't feel good about the way I look! She asked me now that Griffin is going back to school what am I going to do with all my time? And I had no answer. I don't know! There will be swimming at the YMCA and cleaning the apartment and doctor's appointments and errands WOOPEE! Maybe I will get back into yoga and meditation, back into reading Joseph Campbell and into my spirituality more. Start going back to the Unity Center more on Sundays and meet some people there and hang out with them but will Griffin hang out with their kids? Worth a try I guess. I am so timid, when I used to be such the polar opposite. I used to take risks like none other especially when I was in the FBI, before Griffin was born but now it is like I just don't know the middle ground. I need to set an example for him and show him how to socialize. How can an autistic child be expected to learn those skills when his own parent is not even experiencing them herself?

Any suggestions as to how I can socialize during the day in a safe way to meet decent respectable men who would be safe for Griffin to be around.....eventually? I don't believe in letting him around men anytime soon after I begin to see them if there is anyway around it unless it was at church or something it would be different.

Tuesday, August 07, 2012

Organizing Your Child's Special Education File: Do It Right! - Wrightslaw

Organizing Your Child's Special Education File: Do It Right! - Wrightslaw

This is something that is very important to me and I am going to do it as soon as I can.....that sounds lame....I am going to do it starting TODAY! I have got to get his documents in order, I have never done it and they are all over the place and when it comes time to try to find certain ones I can never seem to find them. That is so sad.

I get Wrightslaw newsletter and it is highly recommended. Go to this link and you can find where to do the same, it contains valuable information everyday or is it every week? Anyhow, it is often and it lets you know your rights as a parent and an advocate for your child of special needs in any setting. I actually should put up links to it more often and vow to do so in the future.

Sunday, August 05, 2012

Patience

Yesterday, we started out with Griffin getting up late since he stayed up late the night before. I have to say that we both do better in the summer staying up late and for him to get up late so mom can have some "me" time in the morning that is crucial to my well being. He has his play time during the evening running around in order to diffuse and calm down while mom relaxes. (Although, this morning Griffin woke me at 5:00 a.m., stayed up for 2 hours without being sleepy and it was all I could do to stay awake.  I drank my coffee and woke myself up and can't get back to sleep and he went back to sleep. Guess I will really be tired by the evening.....darn good thing I love coffee so much!)

Then we went to visit my Aunt Gail about 30 minutes away, she lives in a rest home because she had a major stroke years ago and she really likes to see Griffin so we ventured out with Abby on a small road trip. When we got there she wanted Pepsi, I am sure that she is addicted but what's the harm when one is in such a situation there's got to be some pleasure in life right? Then she wanted some candy so we went to the store to get some Snickers and all the time Griffin was so patient. I sat and talked to her for about 30 minutes and all the while Griffin laid in the bed next to hers and drew on his Doodle Pro quietly.

I feel so bad for my aunt and all that she has been through but she has come a long way. She went from not having any control of her speech and the entire right side of her body to learning to talk again, now one can understand her much easier than just a few months ago. I think that she is feeling better about herself because she is wearing her false teeth again, wearing earrings, and she seems to want to be more social. For having had a stroke as major as she had, she is quite lucid and seems to know what she is saying most the time.

We later went to the lake because Griffin had so patiently waited for his reward even though he wanted to see his Aunt Gail his ultimate goal was the lake. He just cannot get enough of seeing the wildlife and the serene water there. I think that he enjoys the people there too because every time we go he mentions them. I follow him as he carefully walks around the gaggles of geese and all the ducks that are around, some eating the bread thrown out by the children hanging out there. We stopped bringing bread because Griffin simply enjoys the company of the wildlife and the scenery.

The schedule that I am using for Griffin, the pocket-sized one that I keep in my purse, that is really simple is working like a charm I am still happy to report. Griffin and I are having a blast together and he is having far fewer meltdowns and when he does have one it is less intense. I am keeping a journal of the ones he has and the circumstances for TEACCH, we go back tomorrow, so that we can maybe make some sense of what is going on with them.

I made some signs for Griffin to use for when either of us get upset and need to use our words: "Mom, you are angry please take a break" and "Mom, I need a break" and "Mom, my feelings are hurt". I am hoping that those will help him and me too. Maybe I should make some for me to use too!

Thursday, August 02, 2012

It's SO Simple

Griffin and I were so privileged to go to TEACCH on Monday and I say that because people get on waiting lists for months even a year or more at a time to get in so I am pleased to work with them. We have worked with them before my foot surgery but the results have never been so great as they are now. Griffin worked with Ann and he later told me that they talked about feelings happy and sad but he did not want to elaborate any further. She did not tell me what they did while working together but Jon is going to send me a summary of what we talked about. Jon is the individual with whom I spoke to about what was going on with Griffin lately and what was most important, that I really wanted to target right now. Those areas included: aggression and meltdowns which kind of go hand in hand but for someone dealing with autism knows that they can be separate all together and have nothing to do with one another.

So, Jon helped me simplify the schedule that I had been using by telling me that all I had to do is to use a small notebook to carry in my purse and to merely use a checklist and put only one to two activities ahead of time just so that he would know what was coming, that I didn't have to be so detailed as I thought I had to be all this time. I had been lagging behind in keeping up with Griffin's schedule because as a bipolar person or as myself I find it personally very hard for me to be organized, and detail oriented so now that the schedule is limited to a simple notebook with just a few items it works better for both of us and there have been no meltdowns so far since then I am happy to report!

We go back next week to continue to do more work and I am so excited. Griffin seems to enjoy going there too. I am also going to keep a journal on his meltdowns: when he has them, where, what the apparent trigger was or alleged trigger was, what the environment factors were, who was around, maybe not even that detailed but just for me to put some headings on my note pad and jot down some data for future reference and data collection for the experts would help to figure out what might be going on in his mind and to decode his behavior.

I am so proud of him and the patience that Griffin has most the time, he can really hold it together....it truly amazes me! He sits in the doctors office while I have my appointments and uses my phone to play games, sometimes getting frustrated but when I tell him that it is time to take a break he does not argue and moves on to something else. Right now, he is taking a break from the computer so that I can use it and he is being creative with his time being patient, I shouldn't be surprised because he is an intelligent guy with a great imagination.

We are still praying for my Aunt Patty and her family and that they will get to move here soon, if you could offer your prayers too that would be appreciated. She has stage 4 cancer and she lives with her daughter and three granddaughters. They mean the world to me and I would love nothing else than to have them to move here to be near family because where they live they are all alone and have no support. My former husband had cancer years ago, he had it for a long time before going through remission going through chemo and radiation so I understand the hell and pain of it all.

I understand how important it is to have support because neither my husband or I had support when he was going through it and that makes it 10 times the hell that it is in the first place. I love you Aunt Patty and Mindy you are so dear to me!

Sunday, July 29, 2012

My Birthday

This will be brief because Griffin is waiting for his turn on the computer but today is my birthday and my dad's. Today I went out with Griffin to the lake early enough that it wasn't so hot in the shade then we went swimming inside at the YMCA where the water was so nice and cool, then we went to Cold Stone Creamery and got an ever so small "like it" sized ice cream for a treat.

We are totally broke, have a hole in the radiator in the car and the air conditioner doesn't work so we can't always take Abby (our service dog) because she gets so hot just traveling from place to place even though she goes in everywhere with us she still wears a fur coat after all. Griffin gets upset because he has to help me open the hood of the car because it takes two people, my car is a 2000 model, and sometimes he simply doesn't feel like helping open the hood to put water in the car.

Gotta go, it is Griffin's turn on the computer. My time is up. I am going to go relax on the couch and either read or watch the DVR programs of the Science Channel I recorded. Welcome to my new friend from Homestyle Mama (with a side of autism).

Saturday, July 28, 2012

Growing Boy

Griffin is now in an 18-20 size shorts and XL shirt, he wears a size 5 shoe but I think that he needs a new pair (he is not cooperating in that area right now). He weighs about 111 lbs. and is about 5 ft. tall. It seems that all he does is eat during the day, that he eats when he gets bored, that he eats automatically when there is nothing else to do with his hands, he just walks to the kitchen and opens up the fridge or cabinets and starts looking in. It is a constant battle. I try to distract him and discourage him and it has triggered tantrums but I do not give in. These are some of the ones that has led to him going after knives eventually.....that's how adamant he is about over-eating. FYI, he goes to a nutritionist on August 7 so she will have some helpful advice as to how to help Griffin with this problem as well as his issues as far as not eating a variety of foods. The pediatrician told me that he needs to slow down the rate in which he is gaining weight since he is 15 lbs overweight for his age, that for Griffin he does not need to lose weight merely slow his gaining rate. It is not as though we don't have healthy foods in the house but he has only resorted to tasting them with his tongue. Now, that is a big deal!

I asked his psychologist about Griffin's obsession with food and he said that he would get back to me on it. I try to keep Griffin outside the apartment as much as possible but it makes me tired because of my Fibromyalgia, it eventually hurts my feet (because I am still recovering from my surgery and I still need surgery on my left foot), and I have to keep in mind that it is very hot because our air conditioning doesn't work in our car therefore it makes us both miserable especially if it is beyond early morning.

Yesterday, Griffin wanted to go to the fountain downtown to play in the water and despite the fact that it was over 90 degrees outside I agreed and I took Abby which probably wasn't a good idea because the car was so hot while traveling. The temperature gauge in the car read 101 degrees probably because we were in traffic and there was no breeze, it was sweltering! It didn't seem to bother Griffin at all.

We made it downtown after driving about 20 minutes, I found the perfect parking space right in front of the fountain and I put enough change in for an hour and a half. I was ready to stay awhile and relax. There was a park bench in the shade right by the fountain where I could clearly see Griffin playing so I settled in with Abby reading my book, it actually felt pretty cool in the shade. It took Griffin awhile to get wet but he got used to the cold water as he walked around the dancing fountain while wearing his goggles (he cannot be near water without wearing his goggles), but after about 15 minutes he came up to me and told me that he was bored.


Oh well, I thought to myself. That is autism for ya! Gotta love 'em!  We sat on the bench and watched the birds for a few minutes then he was ready to go. I love my son and the things that I do for him are out of love. It does not matter that we drove in the heat just for 15 minutes in the fountain as long as he had fun. 



Saturday, July 21, 2012

Griffin is Improving/Smart Strategies for Handling the Dreaded Meltdown

Martina wrote me after I wrote the article about meltdowns on Griffin as she was concerned about him and myself. I found the article that she posted most helpful and would like to share it with you:
http://www.becomeananny.com/blog/smart-strategies-for-handling-the-dreaded-meltdown/ . It includes checking your child for hunger and sickness as a source for a trigger perhaps it is a sensory issue that is a trigger? There are many suggestions on there that I like and giving choices is one of them because that is important to me. Griffin has a menu at home that it gets to choose 2 items off of for his meals.....most of the time when we have the food in the house....and that seems to make him much happier and satisfied, feeling in control of himself.

I won't give them all away but one of the biggies on there is to not take it personally. WOW! Sometimes, that is really hard for me! Being a single parent I find it hard to not take it personally because after all who else would he be "targeting"? When he is not "targeting" anyone at all. He is not going after me, that is until he hits me or attacks me...then it is personal. Otherwise, his words are not directed at me he really does not mean to be hurtful and cut me with his tongue. I must keep in mind that he is autistic, that he is innocent and only 10 years old with limited life experience. He loves me unconditionally and would never hurt me intentionally/knowingly.....it would crush him to know that he hurt his mom (at least after the fact).

Griffin is a happy-go-lucky guy who loves to laugh and play imaginary games, who loves to play with his stuffed animals like Barney, Big Bird, Elmo, Teletubbies, The Muppets, Looney Tunes, and a plethora of all kinds of wildlife animals especially wild birds. He loves spending time on the computer looking at images of these characters plus the Geico gecko and the Aflac duck, and YouTube videos that other kiddos have made. So far, I monitor what he does and he has not gone to any site that is inappropriate, he has been told what is not okay and he stays away from them.

I can't help but to wonder if this recent change in Griffin is being brought on by hormonal changes or if it is his bipolar meds that need to be changed. I had a talk with him, thanks to Melinda and her great comment that she left here on the blog, on the last post.....thank you Melinda! That was so very helpful! Since then he has done well. I just told him that he is getting older and bigger and that when he gets older that things won't be so easy when he gets in trouble. And like she said, I didn't try to scare him but I do think that it did put a bit of a new perspective into him a new bit of respect into him. I think that now he knows that I am not putting up with anymore nonsense because I cannot......he is just too big and out of control. I can't use autism as an excuse all the time, sometimes his behaviors are just because he is not taking control of himself. I think that I have to get a grip on myself and be more firm with him and when he gets out of control in public if I think that it is not a sensory issue and his safety is compromised then I am going to have to put my foot down! I am just going to have to remind him of the rules and consequences and add some new ones if necessary. But I don't see that happening right now.

I would just like to have to avoid having to physically attempt anything with him because he is over half my weight and I just can't handle him that way. When his adrenaline gets to flowing he is incredibly strong as you all know how that goes. I only have my words to work with, I have to use my intelligence....God help me! Griffin is my treasure and I want to treat him with the utmost respect that he deserves, I want him to have high self-esteem but to know where his boundaries are for future reference because I only think that it could help not hinder him in his future endeavors.

Wednesday, July 18, 2012

Meltdown is an Overused Word These Days

It seems like all you hear these days is that kids are having "meltdowns" left and right and it is not limited to special needs kiddos anymore or was it ever? Anyhow, Griffin has something that is not a tantrum as most would believe it to be when witnessing it out in public....NO!!!! This behavior is sensory overload and/or triggers stemming from his autism and it is NOT because he is a brat! I feel so helpless when he has this behavior because all the techniques that I have been taught for all these years have not been working lately like helping him to calm himself down through deep breathing for example which is a great method for most people.

I have sought advice from so many sources and the best thing that I have come up with so far is to keep a journal of his behaviors and maybe I can figure out what the triggers are. Maybe I can figure out something that all these "meltdowns" have in common because it is not the time of day and Griffin has not had a schedule since he was born except once and it was disastrous. That was when family preservation was here and their "help" was not helpful. Griffin agreed to try it once more for school but he has always been the exception to the autistic rule for schedules. I tell him ahead of time what we are going to do and that seems to work fine.

So, I am hoping that maybe this journal will help me narrow down the sensory issues that he has and even though my psychologist tells me that I beat myself up too much and that I am always trying to be perfect, I think that I may be a factor in the whole scheme of things....he would disagree but it is a possibility that I am doing something wrong and triggering him myself. My doctor told me that I do not give myself enough credit for what I do for Griffin, that I have a lot on my plate caring for him and attending to my own mental illness and physical disabilities and that I need to make some changes in that area of my life. I know that I do but it is not easy. He always comes first for me and somewhere I fit into the picture.

I was talking to my mom yesterday and explaining to her the extent of Griffin's behavior and how I was getting kind of scared because when he loses his temper he really goes off on me and hits me and has recently started reaching for the knives as if to get one to go after me with it which I really don't think he would ever do but I have hidden them in order to avoid incidents in the future that might be violent. He always apologizes after he hits me and we talk about it and how it is not okay but it happens again and again.

Griffin seems to really like his new psychologist which is wonderful and he is really helping me to cope with Griffin's problems too.

Thursday, July 12, 2012

Relaxation and Occupational Therapy


Spongebob Squarepants by: Griffin


Paul Taylor was kind enough to write to me and send me this link :
http://www.babysittingjobs.com/blog/10-relaxation-techniques-for-kids/  which includes techniques for your child to relax and they are very easy to do. I think that Griffin will have no problem doing them so I am going to incorporate them into our schedule each day. Thank you for sending that over Paul. He really needs to calm down and relax not only at night but during the day because he is not active which typically creates a calming effect physically which doesn't make sense but activity increases blood flow which helps to calm the muscles down when the activity ceases.

He had a huge meltdown at OT yesterday telling me that he didn't want to go to this OT anymore that he wants to go back to his old OT at the OH Center. He told me that he is so bored where he is and that there is nothing to do but his OT is so good with him and so kind, so good with me too but......time to move on I guess. I know that he needs OT, he still has sensory issues but does he need to go to OT, that is the question. I could just keep his OT stuff here at home......nah.....I think that he needs it outside of home because I can't give him everything that he needs. 

Thursday, June 28, 2012

It's All About Relaxation

Griffin has calmed down considerably and his meltdowns have decreased in numbers and intensity thank goodness. His OT has taught me a trick to ask him "How is your engine running?" when he begins to get upset and that is his cue to begin to take measures to calm himself down with deep breathing. He knows that his engine can either be running too high, just right, or too low. If it is too low then he can run around or jump on a trampoline to rev up his engine and if it is just right then he know that there is nothing he needs to do. So, lately it has been working for me to ask him and he has been self-regulating no matter where we are even in Wal-Mart. I do forget to ask him when his engine is running "just right" or "too low" and do confess that I need to work on that. There are times when he is only sitting either at the computer or telling me that he is bored when I should ask him how his engine is running. Note to self: Ask Griffin how his engine is running more often.

I am praying for my Aunt Patty who is undergoing chemo for stage 4 cancer and wish that I could be with her so that I could give her hugs and show her my support. I wish that she could meet Griffin because I know that she would fall in love with him and that he would bring such delight to her. My parents are with her now which I am grateful for because she needs the support. Even if Griffin and I had the money to go it wouldn't be possible to go because we are having car problems and I don't think that Griffin would tolerate such a long road trip. I guess that we would have to fly but the last time we did that he didn't do well either. Travel is so hard, I think, for autistic individuals because it is so unpredictable besides the security check is hard enough let alone the rest of it!

I took Griffin to the doctor because he has been complaining of a stomachache and the doctor said that it is anxiety, Griffin agreed that he had been nervous. So, I made an appointment with a new psychologist to address the issues that have been bothering Griffin. I am not quite sure exactly what all is going on with him as he is not telling me the whole story. He does tell me some abstract things that don't really make sense but nothing concrete that I could change. I am hoping that if I leave the room that he will tell the doctor what is bothering him. 

I am still having an issue with Griffin coming into my bed in the middle of the night because he says that his TV scares him. So, I removed the TV and he continued to do it. I told him that 5th graders do not sleep with their mothers and that didn't work. I have tried taking away privileges and that didn't work. He is afraid and I have tried to alleviate his fears but I am not a professional so I don't know what to say. Sometimes he doesn't even know what he is afraid of he is just afraid but then I wonder if he is just holding on to me and afraid of growing up. This is why I need a doctor! 

Monday, June 18, 2012

How Our Summer is Going

I haven't been on the computer much since school has been out, Griffin spends time on it mostly, I am on the Android sending out e-mail and on Facebook when I do something while on the couch resting my foot and knee. I just found out that I have a torn meniscus in my left knee that I do not know how I injured unless it was when I was in the wheelchair. Anyhow, I have been hobbling around like a little old lady in a lot of pain and trying to do as much as I can with Griffin but at the same time I have to take it easy on my foot too still. I went to see my foot doc and he told me that it was still too early to not take into consideration the fact that I had major surgery on it only 3 months ago and that it was normal to still be on pain meds.

Griffin is not so violent with his meltdowns but they are still frequent even though I am giving him fair warning of what we are doing ahead of time and we are in a routine. We do things the same every day except for appointment days but those are not necessarily the days he has the meltdowns.

I am tired. I will write more another night that I stay up late and have access to the computer again LOL! I do miss reading my dear friend's blogs but it really is uncomfortable to sit here because it makes my foot throb.

I hope that my Aunt Patty and the whole family gets to move here, I would love so much for them to get to meet Griffin and I would love so much to hug her again! I love you Aunt Patty!

Saturday, June 02, 2012

Scroll Down for Post, These Are Just Beautiful Photos




School is Out



Griffin has been having violent outbursts lately and it concerns me especially since summer is here and we are spending all of our time together, I think it is time to see his developmental pediatrician to adjust his Abilify. There hasn't been a change in it for 5 years so I think that maybe it is time that we revisit it.

We just went to see his neurologist about the Clonidine for sleep and for his tics and he said that I could increase his meds as needed up to 2 1/2 for now and then he we will start seeing Griffin's developmental pediatrician for now on about that med, there's no need to see so many doctors when Griffin is really doing fine. His tics have gone away for now, I think the anxiety about the bullies had a lot to do with it.

Aunt Patty I want to say that Griffin and I look forward to seeing you and the whole family and that we just cannot wait to give you a great big hug! My Aunt Patty was so kind and generous as to make it possible for Griffin to go to camp this summer so be looking out for news about his adventures at camp later on. He is so excited but I can't really tell him too much because it is not quite set up, the director from the Autism Society has to do training for the staff at the YMCA and then we can decide which week Griffin can go.

Griffin is really looking forward to going to middle school, we are having an IEP meeting on the 5th about all the changes that are being made to accommodate him in the mainstream classroom. They are going to tell the classroom that he has autism so that the kids will know when Griffin has a behavior such as a meltdown and they will know how to or not to react/respond. I think that it is best that they know, education is the key at any age. I think that it was a mistake that they didn't tell the kids this year and that is why Griffin had the problem with the bullies.....they laughed at him when he had a meltdown.

My foot is still healing and I cannot do much on it, I still have to elevate it often but we still get to go out to the lake several times a week. The left foot still needs surgery and hurts like hell but it could be worse! I really can't complain, I have a good life.....I am blessed!

Tuesday, May 08, 2012

Fishing for the First Time


I took Griffin fishing with my friend Vicky at a small lake with a dam in the town where I grew up and Griffin really seemed to like going. He didn't get impatient or bored as I thought he might but instead he stayed there with his pole standing and trying to cast it occasionally but usually with help, and here you can see Vicky helping him bait his hook. She would kill me if she knew that I put her picture up on the blog but she doesn't visit so I don't have to worry about it. The fish weren't biting but I think that Griffin was interested enough that he wants to go back and do it again. I didn't buy him the right kind of reel, I just bought the cheapy kids kind and it apparently gets tangled up so I have to invest in one that is closed and doesn't get tangled but in the meantime we can use pole because it worked great for him Sunday.

Griffin has been doing marvelously on his homework lately, especially since Family Preservation left and since we haven't been using the schedules any longer. He doesn't feel the pressure anymore and feels more laid back with fewer meltdowns and no violence. Now that we have changed things at school there is less pressure too and Griffin doesn't come home saying that he is stupid and dumber than the rest of the kids like he used to.

I am considering having him placed in a self-contained classroom for his transition to middle school because I think that mentally and emotionally he is not ready for it. I e-mailed the autism specialist who knows Griffin and she just asked me to take a tour of the new school and then make my decision so that is what I will do. I will see what the new school has to offer and meet the new teachers and see what kind of room Griffin would have to grow there compared to the pressure of the mainstream classroom where I do not think the teacher is going to have mercy on him, where I think that because Griffin seems to be so "normal" that the teacher is going to expect him to perform and behave just as the other kids do because that is the problem that he is having with his teacher right now. Mr. Kirk has put so much pressure on Griffin that it has caused all the problems that he has had over the past year, that compounded by the bullying by his peers which the teachers did nothing about. Griffin was having meltdowns in school and they weren't telling me and the kids were laughing at him. Finally one of his teachers told me the truth about what had been happening and nothing was done to the kids for consequences or to help them understand that what they were doing was wrong and that they were hurting his feelings. All this time my poor child has been suffering and telling everyone about how he has been bullied and his teacher kept telling me and the team from Family Preservation told me that it was Griffin's perception that he wasn't being bullied, that the kids loved him and treated him like a brother.

If Griffin felt like a brother then why would he be coming home and telling me that he was bullied? Obviously his feelings was being hurt by someone. I approached the topic in the IEP and it was still avoided just the same because I didn't have an advocate there with me. I couldn't get anyone to come with me. There is nothing worse than going into one of those meetings alone! Talk about being railroaded and not remembering a thing that was said! All I remember are the papers that were put in front of me to be signed in the end to formalize everything because it all went so fast. I am sure that any of you who have been in an IEP have experienced that sinking feeling you get when in the end you try to recall what has been said as you sign your name and wonder if it is the right thing to do, especially if you don't have an advocate.

We are supposed to have a transition meeting before Griffin goes to middle school and then I am going to speak my mind and make sure that they know where Griffin is going to be placed because we are not going to have a repeat or even worse a tragic new situation on our hands in the Fall at the new school. I am certain that the teachers all talk about me and gossip because that is what they do best but what I do best is to take care of my son at any cost.

Monday, April 23, 2012

Stress for Both of Us

Griffin had a substitute teacher today and he doesn't do well with them so I got a call from the school that he was sick and of course I could not come to pick him up and I felt helpless. My friend who lived 30 minutes didn't have a car to get him so the school had to keep him in the office until the bus could bring him home. If only there had been someone else to call who would have been willing to help. I do not think that I am going to have the other foot operated on until I know that there are people available to help me and Griffin when we need them. I had rather suffer frankly.

Griffin was so upset when he came home that I couldn't come to school and get him, he didn't understand. He just kept on and on and on it drove me insane! He kept running inside and out of the apartment and there was nothing that I could do being in a wheelchair I was helpless but to try and talk to him as he screamed. I tried finally by getting firm with him and demanding that he stop running in and out because the heat was on and because it was snack time. I told him that if he didn't stop that he was going to lose computer time.

He came to his senses and gave me a hug then I had to lie on the couch to rest my leg. Griffin made himself a snack. By this time I was full of anxiety. Later it only got worse as Griffin would not listen to me and do his homework then he spilled popcorn all over the floor that I had just vacuumed earlier in the day, that had taken over 30 minutes to vacuum. The poor guy was going through his own stress and then I was going through my own. Fortunately he has a TV in his room where he could get out of the way of the vacuum and I struggled to get the kernels up the best I could, it is not easy vacuuming in a wheelchair.

Then after all that I gave myself some time to relax and then I reminded Griffin for the 10th time that he had to do his homework. He was dramatic but came into the room and started it. It is no wonder that my blood pressure is high now that I think about it, I do have a lot to cope with each day. It is just that I am so used to it that I don't think about how stressful it really is. Now that I have no outlet and I am trapped here then it is like there is a boiling point.

Monday, April 16, 2012

He's a Big Boy Now

Griffin has been such a big helper since I have been in a wheelchair for nearly a month now. He helps me without even complaining and I have to ask a lot of him sometimes in order to keep from using my foot. I cannot put any weight on my right foot at least for another month and neither Griffin or I have been out of the apartment for any reason except for him going to school and I got out once when my friend took me out to go to the store for a day.

I am so proud of Griffin that he takes Abby out and walks her several times a day. I try to get him to go out to the playground but he will not usually go and when he does go outside he goes out of sight and worries me that I will not be able to get him back in by yelling for him because he might go out too far. It is scary when one is in a wheelchair inside and can't go out to get your own child if there was an emergency, I don't even know if my foot would even support my weight right now if I tried to use it because the surgeon shortened the tendons attached them to a bracket and broke my toe cutting off arthritis flattening it so I do not know what kind of shape it is in as far as functioning normally.

I have an Occupational Therapist that comes to the house that helps me learn how to do things from the wheelchair but there are still limits. I am able to load the dishwasher and do the dishes, mop the floor but I can't use the dust pan so I can't sweep. I can't make my bed nor can I vacuum without making the mistake of using my right foot (oops). Can't really use the stove from sitting position in the wheelchair, too dangerous, but I am waiting for a knee walker that is supposed to be good to help me be up above the stove and my right leg supported. Thank goodness for the microwave, the food is awful but it works. I can use the oven too, the only thing is that we run out of frozen food since the freezer only holds so much. I don't get to the store often but my friend does pick up milk or a couple of necessities when we run out.

Griffin got to go on a fire engine yesterday with a very good friend of mine whose husband is a firefighter. She said that he was apprehensive at first because the truck was so big and intimidating but that the guys helped him get over his fear. She and I agree that it is good for him to be around the guys and that the male influence is just what he needs at this stage in his life. He needs to learn to ride a bike, his scooter, and to some rough and tumble sort of things that boys do. Moms....like me....who are too protective just don't let him do those things. It's not really that I don't let him do those things it's that I don't know how to get him to do them. When you only have one child and that one child is a special needs child it is very difficult to just send him out there and say go take risks and get hurt. It is hard to take chances when you only have one offspring and you already feel that that offspring is somewhat (for the lack of a better word) fragile. NObody knows what it is like until they have been in my shoes to judge me and to think or say what I should or should have done with him. Even though I bought him a scooter I just didn't know how to get him motivated to ride it properly, he watched the neighborhood kids but it didn't help. It seems like I am being defensive because I have had individuals judge me and my parenting skills telling me about what I should do differently with Griffin and I know that they read this blog.

My friend has boys and a husband who are all willing to be there for Griffin and to help him grow as if he had a father, brother, or uncle in his life. They went to the grocery store for me and picked up several items. I asked her to get a treat for Griffin, like cookies, since he had not had any sweets for nearly a month. He chose Oreos, the new kind and I made the mistake of leaving him alone with them after everyone had gone. I wasn't paying attention, thinking that they had been put away with the rest of the groceries but he had them next to him at the computer and munched on them until he had over half the package gone! I didn't find out until he had gone to bed and I was cleaning up. I guess that he made up for lost time and he won't be getting the rest of them for awhile now.


Wednesday, April 04, 2012

After the surgery

These are the photos from the post op

Friday, March 23, 2012

"The Golden Hat" book review

This was an amazing book (one which I received free for review from Simon & Schuster) especially for those who are unfamiliar with autism. The Golden Hat offers a glimpse into the world of Keli who is a non-verbal autistic boy who uses a keyboard for communication. Kate Winslet took part in the writing of the book along with Margaret Ericsdottir, Keli's mother. The book consists of e-mail between Margaret and Kate about the Golden Hat Foundation which has been founded for non-verbal individuals who need care in a safe and loving environment for example once the parents have passed away. To raise awareness of autism the "golden hat" was passed around to very famous celebrities around the world through Kate Winslet and each time that the celebrity put the hat on they would include a quote of their own for the book. This was the part of the book that I was least impressed with because I think that some of the celebrities didn't take the request seriously and just said the first thing that came to their mind. Some were profound and thoughtful, I must give credit where credit is due.

 Keli's poems are incredible and I dare say that some might have thought that such great work would not have come from a non-verbal child because so many people think of them as so low-functioning. I did enjoy the fact that there were photos of other individuals on the spectrum who were non-verbal with their first words...very touching.

In reading this book it hit home for me because for years Griffin didn't speak either and he had to use PECS (picture exchange communication system) and it was a struggle to understand him. He really didn't start talking until he was age 5. Just as Margaret states in her book, I am grateful for everything that I have and each moment that I have and having Griffin has taught me that. She feels that Keli has been her teacher and I feel the same about Griffin, it is amazing how that works.

Margaret confesses her guilt as his mother who wishes her son "normal" sometimes and I dare say that most of us are guilty of that as well and there is nothing wrong with it, it is something that we all think about. What follows is a tear jerker and will touch your heart because I am sure that you have experienced it yourself whether or not you have a typical child or an autistic one.

I highly recommend this book for everyone. Everyone can take something away from this book and feel awakened and inspired by it.

Monday, March 19, 2012

Letting Go

I am learning to let go and stop being so darn clingy with Griffin...he is helping me in that department. It is not easy though and I find that I have to make myself stay away from him and stop being so affectionate all the time. He loves hugs but he is quick to tell me that he needs his space and for me to get away from him, it is not as though it hurts my feelings because I do understand that it is time to separate. It is more like I just don't know what to do with myself, isn't that what happens with moms when their kiddos take their space?

I know that he will need me for certain things but he is getting to be pretty darn independent, cooking in the microwave, cleaning up, and keeping himself quite busy most all the time. He communicates pretty well even though we do have our moments when it is an issue and there's an occasional meltdown. Nobody is perfect on either side of the problem but we have improved exponentially since I made my medication change. We are quick to say that we are sorry when we make mistakes and give big hugs and learn from our experiences ending up smiling even more sometimes.

We are still alone, without buddies or support but maybe soon we will find someone. Sometimes, there are people who you meet but they just don't seem to work out as buddies for one reason or another. So we are still looking.


Tuesday, March 13, 2012

Springtime and IEP

This is a photo of my Aunt Gail, who had a major stroke but who is doing well, and Griffin. We love to go visit her and always look forward to visiting her especially when we get to take her outside and give her favorite... Pepsi.

 I am off the Geodon and have my human-self back, no more robot. I am playful and have emotions again. I am animated and alive! We laugh and it feels good and Griffin follows rules more now than he used to. We do much better in public. Hope that you are reading this Carrie, Liz, and James. I know that you have been reading this blog all along. We follow our own plan now and it is not up-to-the-minute like yours, we do fine with a more relaxed schedule. There is not the pressure to get things done so quickly and that way we can have more fun. I had a lot of anxiety when the family preservation team was here because I felt like I had to live up to what they set up for me and now I know that I don't! I can be the parent that I know is right and good for Griffin, the one that he loves and respects, now that I have a different attitude and I am not so stressed out.

We had the IEP and some changes were made but I didn't have the advocate there that I wanted and I guess that things went as I wanted. He is going to be pulled out of his mainstream classroom for 45 mins. for reading in a small group since his teacher gave him an F which means to me that he was not doing his job of helping Griffin understand the material or communicating to me that Griffin needed the help. All he told me was that Griffin needed to do his homework not that he was having trouble in class. He is going to have less math homework and easier because his teacher was giving him trigonometry and calculus that he was giving his peers and expecting him to complete it in a short period of time at home and all it did was cause sheer frustration and meltdowns.....every night! Most of it I couldn't figure out nor could the Intensive Home Team, they were having to practically do every single step for him.

We are going to have an OT evaluation for him because I had asked his private OT Sarah to fax over a letter to them about Griffin and some additional information and it was an alert to them that something needed to be done about his handwriting and his sensory needs in the classroom. This will be done before he goes to his new school in the fall.

In the transition meeting in May we will address the issue of bullying again if Griffin still has a problem with it. We will address the issue of communication with the teachers and staff in the new school and what is expected of Griffin because he will be in 5th grade and his peers may not be so kind and forgiving and so accepting as his elementary peers have been.

Sunday, February 12, 2012

Finally Going to the Ped. Neurologist Tomorrow

We will go to see Griffin's neurologist tomorrow to find out if his complex tics are from Tourette's Syndrome or some other mysterious disorder. It scares Griffin and as his mother that deeply concerns me. He has tics that are not only in his head and neck but also in his torso and legs. Please keep Griffin in your thoughts and meditations/prayers that there is something treatable going on and not something really serious.

Griffin turned 10 years old last month and he is acting like a big boy now with more responsibilities and he has been a much better listener when I ask him to do something it is less likely that I have to remind him that he will have consequences like losing computer time or that I will have to count to 5...I only get to 3 then he snaps to it, LOL. When I tell him that it is time to do something other than the computer on the weekends he has no problem and gladly goes to his desk to draw or goes to his room to play with his toys. Speaking of toys, he was such a really good sport when it was time for us to finally donate a significant quantity of his toys to Salvation Army. I explained to him that we were taking them there because there is so many girls and boys who cannot afford to get brand new "cool" toys like the ones we were donating, so he was helping them out by bringing them there he seemed happy to help.

I tried to upload photos of Griffin feeding the ducks, today, but for some reason I could not get them off of the phone, still working on that.

Saturday, January 28, 2012

I am so ANGRY and frustrated with the Intensive Home Care team, I have caught them in lies and their collaboration with the staff has done Griffin nothing but harm. I had to call the school counselor to get the truth about the bullying, he told me that the kids were in fact laughing at Griffin when he got angry and that is exactly what Griffin kept reporting but nobody would listen to him.

I also found out through calling the autism specialist that things were fine with Griffin in class and he loved school until the teacher started making higher demands on him and then Griffin only showed frustration and anger. Interesting how the Intensive Home Care team never mentioned calling either of those experts in order to help Griffin out with his issues, just goes to show how the mother has to be her child's best advocate because if I relied on anyone else they wouldn't have his best interest in mind like I do.

I also had to call Griffin's pediatrician and asked him to communicate with Griffin's pediatric neurologist because Griffin had developed complex tics on top of the simple tics that he has already had and they were getting worse. Kudos to the staff and doctors for being on top of the matter in a day's time they truly care for Griffin and had his best interest and health in mind. However, when I called IHC team I wasn't allowed to talk to the doctor (psychiatrist) who needed to change his medications, or her assistant. One of the team members spoke to me and told me that the doctor said to only give Griffin half of the dose that he had been taking for his whole life and I quickly and adamantly protested because I knew that it wouldn't work. She mentioned that the doctor had to think of liability and I replied that apparently that is all that she had in mind because he had been on the .2 dose of Clonidine since he was 3 years old in Anchorage, Alaska. Every doctor that we have seen since then has agreed that that dosage was correct for him.

I was determined to do what was best for Griffin and found that there was one refill and so I called it in to the pharmacy right away. The team member said that I was going against the doctor's orders but I reminded her that she doesn't know Griffin because she has only seen him twice for about 20 minutes each time so how could she know better than his pediatrician and his neurologist?

All they have done is to make Griffin more insecure and caused him to think that it is okay to not be heard, to not be listened to by his teachers and those who are serving as role models. They have not listened to him when he kept crying out for help where the bullying was concerned and made it seem like it was all in his head. I cannot wait to have these people out of our home and to be able to have our privacy back and to stop being judged and talked about all the time behind my back. It is demeaning and they treat us both like we are idiots and I do nothing right and that all they do is perfect.

I must add that Griffin loves James but I do feel that after the first visit he had been fed judgment about us and started acting strangely the second visit. I do appreciate that he plays with Griffin instead of just focusing on his academics like the girls do. He does have really good ideas.

Wednesday, January 25, 2012

Griffin is doing so well and showing so much progress with the Intensive Home work, there is a new worker who is a male and Griffin absolutely adores him. James played with Griffin outside playing the drums in the parking lot and then throwing the football which Griffin really enjoyed. When it was time for James to leave Griffin started crying and James took the time and had great patience with him to help him transition to the separation until next Monday.

I really appreciate that James took so much time with him helping Griffin to learn new coping skills for stress and anxiety for tantrums/meltdowns and helping him to take his time on his homework. Griffin has only a couple of male figures in his life but they are at school which is not necessarily good because he doesn't really like school. Griffin's IEP is coming up in February and I know exactly what I am going to say and demand for Griffin that has not been taken into consideration the whole year. I will report back and let you know what that is closer to that time because there are individuals from the school who read this from time to time. I don't want them to know ahead of time because I am getting advocates to come to help support me since I know how overwhelming it can be in an IEP with all those staff talking so fast and moving from topic to topic and getting the mom to sign here and there without really explaining what's going on.

The last IEP was a disaster for me because I didn't have anyone to help interpret what was being said and things moved so fast and then it was over and I had no idea what had just happened now Griffin has been in a class for a year that pressures him to keep up with his peers which has caused him to get two- F's in reading and low grades in others areas as well. His (mainstream) teacher complained that he has to take so much time with Griffin and do so much extra work to help him that it is not fair to the rest of the class. Well, then why is he in that class? Why is he not in a special needs class? If he needs extra help then isn't it fair to him that he gets that one on one without interfering with the needs of the rest of the class?

All the time I brag about how intelligent Griffin is and that he is but it does take him awhile to process and then he does have special needs in the area of sensory motor skills and still has communication skills difficulties and of course social skills. In fact, he has been having a marked issues with bullies and it has caused anxiety. He talks about it almost everyday and it is always on his mind, his teacher and special needs teacher I don't think are taking it seriously because they say that it is just Griffin's misinterpretation of what the other kids are doing. That may be part of it but that still needs to be addressed and he needs to learn skills to cope with that. He is suffering and I think that if he were in a special needs classroom then he would be where other kids experience the same things and the teacher would have more sensitivity to his needs.

I hope to be posting more often now so please check by often and I will spend more time visiting your blogs because I miss knowing what you all are doing, I do consider you to be my special blogger friends.

Wednesday, December 28, 2011

Michelle L. in Alaska please get in touch with me because I have missed you and I can't send you a message on Facebook.

Tuesday, December 27, 2011

As I sit here Griffin is playing with his "characters" and looking for more food. That is his favorite pastime lately probably because he is going through a growth spurt. He is  57" high and weighs 96.2 lbs. When he is in line with his peers he is considerably taller and appears to be less frail or slender than they are. I know that he is going to be a big guy because his dad being Samoan and a very hearty, tall, and big boned. Samoans are not to be bothered as even the women are large but they are so kind and gentle but unfortunately Griffin's father decided that he was not going to acknowledge his child and be a part of his life. Fortunately, Griffin has not asked about having a dad and when he asks I will just have to tell him the facts...that I do not know where he is.

We had a pleasant holiday because my parents came over for the better part of the day and so did my sister and here family. I cooked a turkey for the first time and the dark meat didn't get done all the way through and it was grizzly but the breast meat came out fine and was plenty to have leftovers. Mom and Griffin made gingerbread cookies that came out great and was a big treat for us because there is no sugar allowed in home since we are both prone to gain weight. When Griffin earns points for good behavior then he gets to buy whatever he wants and sometimes it is chips or something sweet.

I went to the foot and ankle doctor and he prescribed braces for both feet and ankles which I wear all the time except for sleeping and showering. No physical therapy because it just makes the pain worse and he told me that I should not expect to begin to feel better until at least the Springtime. He also prescribed Celebrex which helps the inflammation but not the pain. I do not take pain meds because even though I can take two of them and one is not enough I do not want to go down that slippery slope, it is too easy to become reliant on them thus leading to possible addiction and/or needing more and more to get the same effect. I stopped drinking and smoking over a year ago (which does not make me think that I am an angel) and have a history of self-medicating with alcohol when I was manic.

I hope that all of my blogging friends had a wonderful holiday and I say "holiday" because I don't want to offend anyone who is of other religions or beliefs other than Christians such as myself who does not  celebrate religious holidays because I am Agnostic (not an atheist, mind you) I do respect those who are of religious beliefs.

Saturday, December 03, 2011

Happy Holidays

Griffin is growing and changing in so many ways it is so wonderful. He has learned to be more respectful of me and to be a better listener. The talk that he had from Papa made a big difference on Thanksgiving too. We are both more loving and affectionate with each other sharing lots more hugs.

 My feet and ankles are worse than ever and it hurts just to sit in this chair, if my feet are not propped up then I have increased swelling and sharp stabbing pain coming from my bones. My PT said that it appears to be arthritis to him. I will know more after I see the foot and ankle specialist on Wednesday.

I hate that I have not been keeping this blog updated I must try to sit here earlier in the day when I have less pain.

Friday, November 04, 2011

Recovering from Surgery

Griffin is doing very well with the new schedule at home and at school. At home he has been behaving much better with less physical aggressiveness however Saturday he did punch me in the gut right where I had incisions from my surgery. I called one of the Intensive Home girls and she helped set some boundaries for Griffin. To Griffin's credit, he does have no problem with saying that he is sorry and giving out sweet loving hugs. I must add that I am grateful that the three women from Family Preservation are coming over and helping because I really do need the support from experts.

I had surgery last Friday to remove my gall bladder because I kept having attacks that were so severe that they felt like the labor pains I had with Griffin. Thankfully my parents came up from SC to help me because I wouldn't have been able to do it otherwise. I go to see the surgeon today to check my incisions and I think that I have ruptured one/some of my stitches around my belly button because it is pretty hard and it looks like it has fresh blood has leaked under the skin not to mention it hurts like hell, even when I take a pain killer.


I would like to share some books that I have read over the years that I have found helpful: I am going to read them again because I remember that they were a great read and informative.


"Parenting Toward Solutions" by Linda Metcalf, Ph.d

"Teaching Children with Autism an Related Spectrum Disorders" by Christy
 L. Magnusen

"TalkAbility, People Skills for Verbal Children on the Autism Spectrum--A Guide for Parents" by Fern Sussman

"Rewards for Kids!" Ready to use Charts & Activities for Positive Parenting" by Virginia M. Shiller,
PhD

"Raising Self-Reliant Children In A Self-Indulgent World, Seven Building Blocks For Developing Capable Young People" by H. Stephen Glenn Jane Nelsen, Ed.D

"Raising Sexually Healthy Children, A Loving Guide For Parents, Teachers, and Care-Givers" by:
Lynn Leight, R.N.

"Parenting Your Complex Child" Become A Powerful Advocate for the Autistic, Down Syndrome,
PDD, Bipolar, or Other Special-Needs Child. By: Peggy Lou Morgan (I highly recommend this book)

"Why do I have to?" A Book for Children Who Find Themselves Frustrated by Everyday Rules.
By: Laurie Leventhal-Belfer

"The Autism Sourcebook; Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing" By: Karen Siff Exkorn

I even bought a couple of  books that are for Griffin's future that might help me understand the transition that he will be going through in a few years....

"Life and Love: Positive Strategies for Autistic Adults" By: Zosia Zaks with foreword by Temple Grandin

"Autistics Guide to Dating" A Book by Autistics, for Autistics and Those Who Love Them or Who Are In Love with Them. By: Emilia Murry Ramey and Jody John Ramey

Despite reading all these books I just can't seem to find the perfection that I have worked so hard to find. It is said that there is no such thing as a perfect parent but if I were better at looking after Griffin and teaching/guiding him then there wouldn't be other people examining what's going on here, this is my perspective.

It's not that I mind the Intensive Home people coming over and going to Griffin's school to observe him, in fact I am glad they help us but, I don't feel that I am the pro-active mother that I used to be. After some thought about it and a realization soon after speaking to one of the girls who come over to help us, since taking Geodon my life has been very different. I have even blogged about it in the past since moving here to NC but I couldn't quite put my finger on it, I just knew that I wasn't myself and that I hated the way that I was feeling and behaving. I spoke to one of the three women who are in Intensive Home Care and she helped me to realize that things started changing in our lives since I was hospitalized about 3 years ago subsequently be prescribed Geodon.

I am still on (3 fewer) Geodon but I hope to get off of it because I think that it would make a great difference. Of course when my moods/behaviors are out of balance it effects Griffin and life is really tough for us. Sometimes I am not aware of my mood change because there is nobody around to let me know so it can go on too long. Fortunately my doctors help me recognize the signs of moods changing and change my medications accordingly.

Griffin is such a trooper who is so patient with me most the time but I do see him having more behaviors when I am not really stable. For those who have no idea what it is like to be Bipolar with PTSD please do not judge me, I am here to tell you that it can be extremely frustrating and pure hell while feeling totally helpless/vulnerable.