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).

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. 

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.

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.

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. 

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! 

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!

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!

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.

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.

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.

After the surgery

These are the photos from the post op

"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.

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.

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.

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.

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.

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.

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.