Life is not without its challenges but also full of blessings. When I hear my son's laughter all those challenges temporarily fade away: and when I think of the unconditional love that we share, I realize what a precious gift that has been bestowed upon me in this lifetime in which I had never imagined would be so magnificent. The one thing that I am sure to tell him every day is that I love him and that he is exactly the way he was meant to be created..He is PERFECT!
Griffin and I have been going to the lake lately to feed the geese and ducks, he gets so much joy out of it and it is such a simple and FREE thing to do. It is nice to be in the shade with the breeze out of the heat just relaxing watching him have fun.
I wanted to write about how blessed I am and to make note of all the things that maybe some parents might think would be a hardship and not a blessing in disguise but these are a few that come to mind when I think of Griffin each and every moment of his precious life:
When we are on the playground I don't have to worry about having playmates for Griffin because he loves playing all alone gleefully. And when there are other kids around he will talk to them and they will talk back but he doesn't care what they say really but that's okay because he has fun regardless. It's a blessing because he is not shy by any means but simply carefree and happy no matter what. He says that he has friends at school and he waves to them when we see them out in public so perhaps he is going to become more social one day and if he doesn't that's okay too!
I don't have to worry about having to cook a 5 course meal for him every night. Griffin is a picky eater mostly due to tactile reasons, he is offended by certain textures and his gag reflex is super super sensitive. So he only eats about 10 different foods. And it is a blessing because not only do I not have to cook elaborate meals but grocery shopping is quite simple as well. Maybe one day he will stretch his wings and try new foods....I can only hope and keep trying but for now I choose to see the positive side of things.
Griffin may not be able to focus in school but he can certainly focus at home when on the computer and for extended periods of time. He is extremely good at working on the computer and I do call it working because he isn't playing games at all. He searches for images and vintage videos of commercials and old Sesame Street shows etc... He can navigate the Internet far better than I can and find exactly what he is looking for every single time! And the concentration that he has is incredible especially compared to what he has in school....of course. This is a blessing because at least there is some hope that if we can harness that energy and find rewards for him in school to keep him focused like he can do at home then maybe he can thrive at school finally and make some significant progress that he has not made in so many years.
Another blessing that is an obvious one that is not in disguise is that Griffin is an incredible artist and is doodling all the time. I look forward to the future and all the progress that he will make in that area. There is an animation class that I hope to take him to in July that I think that he will love since he loves doing cartooning, it would be great if he could make them actually move! I have all his artwork put away and it is all mixed in with a bunch of other paperwork right now or else I would include a photo of some of it but I am too lazy to muddle through all of it at the moment.
I am blessed because Griffin is perfect just the way he is because that is the way he was created and the way that he was meant to be. He is not flawless, that is not what I mean by "perfect" but perfect in the sense that he is the way he is....autism and all and that is perfect!
This is the parrot that Griffin put together at camp when the counselor and he were playing pirates on the playground and Griffin commented that they needed a parrot. So the counselor said that they should just find the stuff to make one there and put it together in arts and crafts immediately after the playground. So this is what Griffin made and I think that he did a darn good job!
Griffin had such a great time at camp that when I first saw him right before the talent show the counselor asked Griffin what had said earlier about when he had wanted to go home and Griffin replied, "Saturday" (it was Friday). But then he kept giving me tons of hugs and kisses and showed me that he had missed me and was so very glad to see me, he wouldn't let me go he was so affectionate and I wouldn't let him go either!
Then it was time for the talent show which I didn't get a still photo of because I got a video of it but I did get a photo of the award that he got from his counselor for being the wildlife expert:
In the talent show he did bird sounds and the audience loved him. He did it all by himself and wasn't even bothered by being on the stage performing with just himself and the counselor. She named the birds and he made the sounds and acted out the penguin which got a good laugh from the crowd. Griffin got the wildlife expert award because he is indeed an expert on wildlife, if you need to know about animals he is your guy!
To get Griffin to talk about camp is another issue because he just won't do it, it is like pulling teeth. He will only tell you that his favorite parts were the pool and lunch. I do know that he liked the other parts from what the counselor wrote in her notes such as hiking and watching the birds. His latest love is for birds lately and when I can afford it I am going to buy him a book of birds from this area so that we can identify them and maybe one day we will learn their bird songs too.
I am just happy to have him home and joy once again fills my heart and I can't thank my friends from Facebook enough and my family for getting me through the week and my dear friend who came to visit....made all the difference in the world to me! It was almost the week from hell and there were moments that were hard when nobody was around that were nearly impossible to get through where my heart was breaking but I made it through. Next year, hopefully, won't be quite so hard but I will be sure to be busy with something and with someone the entire time to be certain that it is not so impossible to get through.
My sister just wished me a Happy Father's Day because, she said, that when you are a single parent you get to celebrate both since you have to be both father and mother. Well, cool, I said, never thought of it that way before!
It is not even yet 24 hours until I see Griffin again and I am dying of loneliness and the emptiness of this place is eating me up inside! My heart is literally hurting and my breath is shallow as if to want to stop as if the life of me wants to cease to exist. It is only proof that my life is in that precious child and this "me" time is bogus and all that I needed was a few days of it and enough already! If there is not another adult around to keep me busy then this empty apartment and the lack of anything to do is killing me!
I spend a lot of time on Facebook as I have a big support network there and I have had a few friends tell me that this time is for me and that I need to back off and let Griffin alone during this time because it is a time for him to grow, for us to grow and they were right....it is true that I need to allow him to grow and become more independent. I told one friend that there is no one around to police me and show me how I am keeping him from thriving as an independent child so of course I protect him and probably a bit too much. I do this because he cannot do it himself but how can he learn if I don't give him the opportunity? I must learn to let go of him and it is a son-of-a-bitch! It is the hardest thing that I have ever had to do in my life....just to think of sending him in the men's bathroom out in public and wonder if he will be able to protect himself if someone makes advances towards him.
I read a book to him, "The Right Touch" and asked him questions throughout the entire book and made sure that he completely understood the reason that we were reading the book. At the end I asked him what he should do if someone tried to touch him on his penis or his bottom or if they tried to touch him if he didn't like it and he said that he should scream out loud, "Stop it I don't like that" and run away, then he would go and tell me or another trusted adult. So, he got it right and I just have to trust that it sunk in and that he will retain that knowledge and that he will never have to use it. But if he does then I hope that he does it with great conviction and that he does tell me that something happened to him. I just have to trust the powers that be that we are taken care of and let go of it.
I have done all that I can do and I am trying not to stress over not having anything to do. I am also trying not to stress over not having any money....literally! I have enough money for a gallon of milk and that is it until the end of the month! I honestly don't know what I am going to do. I thought that I was going to get a student loan check this week and I just called and I found out that that is not true. It sure gets old not having any money but usually we are taken care of and somehow money comes through for us out-of-the-blue so I have to trust that somehow it will happen again and not get upset.
The only thing that got me through Monday, Tuesday, and Wednesday was the fact that a dear friend came to visit and we went up on the Blue Ridge Parkway and took some great photos. I just love living in the mountains, it really feels like home! I already miss my friend and look forward to seeing him again too bad he lives far away....but I am grateful for the time that we did get to spend together.
Well, it went off without a hitch! Griffin walked away and mommy didn't cry her eyes out because I was just so very happy for him. Here you see him with his counselor and his new buddy who he will be with the whole time. The ratio is 2:1....isn't that wonderful? Griffin is holding up two little frogs that his new buddy gave to him and he thought that that was just the coolest thing!
As soon as we got there though we had gone to his bunkhouse to drop off his things and Griffin chose the top bunk as he has never even slept in a bunk bed before so he was pretty excited. The we met his new buddy and then they walked away to go to eat. I had gotten the chance to ask his counselor a few questions and it made me feel much more comfortable that she was in college as a recreational therapist and that is how she had gotten to the camp. She was a very jovial person and right away won over Griffin because as they were walking they were holding hands and that brought a tear of joy to my eye!
If the truth be known....I didn't go alone to the camp with Griffin. I had asked my cousin to go with us, Griffin's favorite Uncle Charlie. I knew that if he went then it would not only be a buffer for me but it would help Griffin too. In that it would help him to understand that camp is going to be fun and a great place for him to be until Friday when I come to pick him up. And I was right...it did work out better for Charlie to be there for both of us. I didn't cry because Charlie was there for moral support and Griffin didn't get upset because Charlie said that camp was "Cool". And besides there was so many new things for Griffin to explore that I just don't think that he had much time to really think about getting upset. Before I left I found out that he had S'mores and I got to see him at the swimming pool too. They go swimming 3 times a day!
Rewind to this morning......for a treat since Griffin won an award as the "Best on the Bus" for safety and got a free dessert card, I thought that I would take him out on his first day of camp. So for breakfast he got to have a hot fudge cake! He thought that that was a pretty cool thing to do for breakfast since that has never happened before. And I doubt that it will happen again for a long time but what the heck....you only go to camp for the first time only ONCE!!!!
Sunday, yesterday, we went to see the autism camp even though it is not open yet. The director let us come to visit because she said that there was no social story in place for it so a visit was in order. It wasn't very far away so it worked out just great!
Griffin seems to be excited about it now because he got to see the swimming pool, the gardens, the bunk beds where he said he wanted to sleep on top, the arts & crafts room, the sensory room, the music room, and he got to say hi to all the counselors who were meeting there....they all had great big smiles!
I feel so much better now that we went to visit and I am so excited for him as I am sure that he will have a great time but I am still sure that I will not be able to hold back the tears as I will miss him so very much!!!
For reasons I do not wish to go into, I have learned not to put my personal information on this blog...or any blog for that matter. From now on this blog will only contain information about Griffin and the rest will have to be only shared with my Facebook friends who do not judge me and persecute me for being human, for being Bipolar and for having PTSD. This person has NO idea what it is like to raise a child as a single parent nor does she know what it is like to have a child with autism. Yet I am judged over one isolated incident. Enough said!
Griffin's psychologist looked at his test scores from when the school tested him and was amazed. He couldn't believe that his IQ was so high and that his reading, spelling, and writing scores were so high. So there....he is not so MR'able anymore is he? Now I can rest assured that he is well aware that Griffin is far more intelligent than he previously thought. I don't feel so confused anymore about whether Griffin is low or high functioning...I shouldn't have listened to him in the first place because he has had limited contact with Griffin and Griffin has never been tested by him. Mostly Griffin just does the neuro-feedback while he is there and has no chance of proving himself while there. His test scores show that he is on the verge of being Asperger's but I don't understand how because of his communication delay. I only know this now because the doctor explained all the scores to me when in the IEP nobody explained them.
Still, Griffin's living skills are very limited and even though I get him to do things on his own he has a lot of practice to be able to master them. Such skills as cutting a piece of food (like a hot dog), brushing his teeth, tying his shoes, and motor planning. He has been working on his gross and fine motor skills at Occupational Therapy with some recent success. In Speech Therapy he is doing quite well as long as he can sit still and focus.
Soon he will be going to autism camp and even though I have talked to him about it, he just doesn't seem to understand the concept. Every time that I try to talk to him about it he gets upset and tells me to stop. He doesn't want to talk about it so I don't know what to do because I don't want him to feel abandoned when I leave him there. I will be staying for part of the day on the 13th and talking with the counselor who will be with him-the ratio is 1:2 and explaining to Griffin how it will work. I sure hope that he doesn't get upset because it will break my heart to leave him like that. It will be hard enough as it is.
In the second part of our series Autism through the Lifespan, we look at early childhood with an autism spectrum disorder.
Part two of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.
Most families with a child on the autism spectrum divide their lives in 2 segments – before and after the diagnosis.
Astrid Arroyo: Well, the first time of course, I was, crushed. But early on, when he first got his diagnosis I thought with early intervention, everything is gonna be ok, we’ll just work on it. The whole time, I’m thinking you know, by three or five years old, he’ll be typical child.
That’s Astrid Arroyo, whose son Kai has autism. He’s had hundreds of hours of one-on-one training and has made tremendous progress. It’s not apparent to the untrained eye.
Astrid Arroyo: Right now he’s not even potty-trained. I mean, he is but he’s not fully potty-trained. So he still wears pull-ups. And he’s 9 years old.
The first post-diagnosis step is applying for and getting Behavioral Health Rehabilitation Services or wraparound. The earlier a child gets them, the better their long-term outcome. For the most part, the tailored services are all paid for by medical assistance. It’s an intensely personal process – the specialists make house calls.
There are about 20 people that work with Kai. He has specialized physicians, language instructors, behavior and occupational therapists – even feeding specialists.
He never switched from baby foods to solids.
Astrid Arroyo: He only eats butterscotch pudding. And he drinks milk from a bottle and that’s it.
Heath, his younger brother, often helps feed him.
Astrid Arroyo: They’re only 16 months apart. They have the same friends. Heath has been able to teach him a lot of stuff. Going back to whenever they were little, Kai didn’t walk until he was about two years old but even before that he didn’t crawl and he learned to crawl because of Heath.
According to the Centers for Disease Control and Prevention, one out of 110 children now have an autism spectrum disorder.
Autism impacts thinking, behavior, language and ability to relate to others. The severity varies. It may have a co-existing condition – common ones are epilepsy or gastrointestinal illnesses or attention deficit hyperactivity disorder. There is no cause and there is no cure. Autism Spectrum Disorders present differently in everyone who has it.
Kai for example, understands most of what he hears but has the expressive language of a 3-year-old. He is social and affectionate. And he looks up to his little brother.
The rate of autism is steadily increasing. The numbers are high but many in the field say they aren’t even altogether accurate. Jana Iverson is a psychology professor at The University of Pittsburgh.
Jana Iverson: It varies a lot by economic and urban or rural environments. So children who are white and living in urban settings are more likely to receive a diagnosis earlier than minority children and children who are living in rural areas are likely to receive a diagnosis even later.
Astrid is originally from Puerto Rico. When she went to see doctors she was told not to worry because Kai’s speech problems were the result of her speaking Spanish at home. But she didn’t speak it at home. And even if she did, it wouldn’t have caused the sort of issues her son was having.
Astrid Arroyo: A lot of Spanish speaking families here are going through the same thing where their kids are late, you know they’re not talking at the right time and when they go to the pediatrician, the pediatrician will say it’s because you speak Spanish in the home just give it some time and come back. The problem with that is when you say it to the parents they come back when the kids are 5 or 6 so they missed out on early intervention.
Dr. Diego Chaves Gnecco says with dual languages, pediatricians often don’t diagnose. He’s working to fix that.
He runs Salud Para Ninos, a bilingual clinic for kids and works as a developmental behavioral pediatrician at Children’s Hospital of Pittsburgh. Nationally, Hispanics are less likely to be diagnosed with autism. There aren’t local statistics. But based on his work and the lack of outreach, he knows one thing.
Diego Chaves Gnecco: If you are Hispanic in the United States you are less likely to be diagnosed with autism. If you are Hispanic in Southwestern Pennsylvania, you are even less likely to be diagnosed with autism.
Part of it, he says is the “invisibility” of the Latino community. Elsewhere, there tend to be geographical ethnic enclaves. Here, the community is scattered. According to the census, in Allegheny County, there are 8,000 Latinos. About one third of them are children.
The doctor works in the outlying counties as well. Children in rural areas also tend to be under-diagnosed. Diego Chaves Gnecco: We started going to Washington county. We drove for about thirty minutes from here, those families were underserved, they didn’t have a doctor, they have never seen a pediatrician for their kids.
Sometimes providers miss the signs. But other times parents don’t seek help because they don’t know how to or where to go.
Legal status can play a role. Astrid has been doing outreach within the Latino community.
Astrid Arroyo: We learned now, when we do trainings not to ask for a return address or even have a mailing list just to have them come and to have them listen. Because I think a lot of people that are immigrants if they have to register, if they have to provide a phone, an address, any information like that – they’re not going to come.
If a child doesn’t have legal status then they can’t qualify for medical assistance – the first step in obtaining wrap-around services.
Paying for treatment out of pocket can be costly.
Sometimes, she thinks of moving back to Puerto Rico.
Astrid Arroyo: I would love to. Just for the fact that’s its Puerto Rico, the weather is nice and my parents are there. I know for a fact that there are no services there.
Not having services in Puerto Rico is why Wendy Lopez moved here. Her 9-year-old son is severely autistic. Paying for services would have cost her upwards of 25,000 a year. She says she would have moved anywhere to provide him with what he needed. She picked Pittsburgh because she had family here and had researched the state’s services.
Wendy Lopez: I never thought I would be living somewhere else. I always thought I would live my whole life in Puerto Rico but having this situation made me realize how lucky I am of having this opportunity of living here, providing Victor with all of the resources he needs.
African-Americans are also under-diagnosed. Terry Scheffey of Family Behavioral Resources does outreach in the community. He says there’s about a two-year diagnosis gap.
Terry Scheffey: A lot of minority kids don’t see the same physician all the time so they don’t pick up on it. A lot are diagnosed with behavioral problems instead of autism. And there’s a huge gap in the medical system period.
Sometimes, parents get a diagnosis and don’t pursue treatment for their children.
Terry Scheffey: A lot of parents say, I got the information and it hurt so bad, I just waited. A lot of times what happens is when when the kids get to school age, the school tells them. Before your child is at school age you can pretty much say oh, he’ll grow out of it. When your child gets to school, you pretty much know when your child is falling behind – I think reality hits them.
He is starting a support group for African-American parents. In the Pittsburgh area, there are about a dozen of different types of support groups. Astrid belongs to several.
Astrid Arroyo: Everything that I know and everything that I have been able to get for my son has been through other parents who have shared their experience.
It helps, parents say, to be around others who are also going through similar experiences. And it also helps to talk about their feelings.
Patti McCloud’s son Jordan is 13. For her, one of the hardest things is watching other children hit milestones when her son hasn’t even hit the most basic.
Patti McCloud: I’m hoping that someday, I could have sworn he said a word yesterday. I could have sworn he was laying there and he said the word mom. And then I think, do I just want him to say the word.
Oftentimes they say it helps to talk about how hard something as simple as going to the grocery store can be.
Lynn Cass’s son Alex is 12.
That’s him.
Lynn Cass: That’s kind of unsettling, upsetting, sometimes people are really rude and will stare at him and you see them whispering and that bothers you.
Despite the upheaval that follows the initial diagnosis, many parents say they get used to it.
Astrid Arroyo.
Astrid Arroyo: For the first three years of Kai’s life I was miserable. I think that was my rock bottom. In fact, I think finding out he had autism was kind of like a wake-up call and it was just one of the things, I’m like, ok, this is the way, I cannot change it.
She has come to peace with her life and even grown to love it.
Astrid Arroyo: Right now I’m enjoying everything that’s going on right now, everything just fell into place, everything is perfect at school, we have therapy going, his relationship with his brother is just perfect and we can go out now, we can go out to restaurants and I just want to be as happy as I can right now and enjoy it. Because I know (laughs) once puberty comes…
Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.
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Griffin and I are walking into Wal-Mart with Abby Griffin's service dog and the idiot at the door yelled at me and asked me if the dog was a service dog. I guess the bright blue vest with the vivid white patch that said "Service Dog" on it wasn't proof enough. So I yelled back at him and asked him if she had a vest on or not!
Then we go to the aisle where there is cereal and Griffin wants Frosted Flakes and I reminded him that he is not allowed to have sugar and that there is sugar in that cereal so he proceeds to have a meltdown. I noticed three females staring and I keep talking to Griffin telling him that he could have the "reduced sugar" Frosted Flakes but he just got worse. So one of the girls was making a face and watching Griffin and I glare at her with as evil a look as I could, which wasn't hard since I was exasperated anyhow, and looked her straight in the eye and said, " he's autistic"! She turned away and looked embarrassed and then I was glad!
Finally Griffin calmed down and we got the cereal that I told him he could get. So then the ignorance did not stop there.....I was buying some wine, and god knows that I deserved it, so the checkout woman asks me for my driver's license and I gladly give it to her. THEN......she asks me if I was driving tonight, it gets really good now....so I say "Not after I get home" wondering why the hell she was asking. Then the idiot tells me that she thought that Abby was a seeing-eye dog and she was wondering how I could drive. LMAO!!!!!! (Laugh My Ass Off)!!!!
So we walk out the same door and the first idiot tells me to have a good evening and I was so over it that I didn't even glance at him. I cannot believe that in the time frame of about 15 minutes I met 3, count them, THREE idiots all in the same vicinity!!! So I go home sit on the couch and have my glass of wine that tasted like heaven considering what I had just gone through. I had kept my composure the entire time and by god I was going to do something for me!
Yesterday Griffin was having a meltdown in the grocery store as he was insisting on getting some candy. I calmly reminded him that it wasn't allowed and told him that if he was truly hungry that he would choose something else, even chips was okay at that point. But he just got worse with every passing minute...no...every passing second. Then he runs to the next aisle in meltdown mode and I told him that if he didn't come back that we were leaving. We were actually on the way to his speech therapy before all this. He then comes back but proceeds to walk swiftly to the ice cream cooler and once again I remind him that it is not an option to have sugar. He is in full meltdown mode at this point screaming his head off as it reverberates through the store. I had noticed a woman that was nearby through all this but I was so wrapped up in what he was doing I didn't notice that she was watching.
Finally, I take Griffin by the hand and calmly lead him out of the store mumbling under my breath. I let him get in the car screaming and walk around the back of the car as this woman who had been watching approaches me and tells me that my son is so lucky to have a mother like me and that he could easily be a victim of abuse but that I handled things so well and that she was so proud of me and then she gave me a big hug. I was near tears at this point and all I could say was that I was trying so hard because he wasn't being a good listener. She told me again what a great mother I was and I got in the car and tried to breathe.
It didn't hit me and it still hasn't because I don't feel like a great mother. I feel like if I was maybe my son wouldn't have so many meltdowns lately. Maybe I would have this magic up my sleeve that would make everything all better. I am so exhausted...........going to go sit down and veg out in front of the TV again and try to go to sleep soon. I just wish that there was some miracle that would help him cope with me and the world better. I don't wish the autism away because that is who he is but I sure wish that the behavioral issues were under control.
My dearest aunt lies in bed in the hospice house..........this is really hard to write...........and as she is near her passing I remember her as the loving aunt who loves to watch and laugh with Griffin. She would always brag about him to my mom and dad whenever she would get to spend the day with us. Unfortunately I did not take a picture of them together as it seemed that I always forgot my camera but I have nothing but fond memories of her. If this doesn't seem like my best writing then it is because I can't seem to get past the tears to think clearly.
She told me one night on the phone what an awesome mom I was to Griffin, that it was amazing how patient I was with him all the time. I was so touched by her words as it meant a lot to me that she thought that and felt that way. I will never forget how that made me feel and I remember her smiling face and the sound of her laughter. We used to go to the YMCA together because she loved going into the pool to exercise and going into the sauna and whirlpool made her body feel better. She was bound to the wheelchair because she had no femur in her left leg so any chance we got we would go and enjoy ourselves. We loved going to Hot Dog World where they had the best hot dogs and Reuben sandwiches. On the weekends Griffin and I would go to her house and hang out. Griffin would hang out with his uncle Charlie and ride the scooter and I would sit outside with Aunt Gail and just talk.
We had a lot in common because we are both bipolar and both have had a lot of life's experiences. We both understood each other and how life throws you a lot of curves. We listened to each other and knew where each other were coming from without having to go into details. She was my best friend and I am going to miss the hell out of her. The images and sounds will forever stay in my mind and in my heart and I am glad that we were there for each other because it was an awesome friendship. Guess there will be a void in my life now but my heart if full of love for her and that will never go away.
I will write about Griffin in another post, it just doesn't seem appropriate right now.
Griffin played baseball today even though he was reluctant and seemed to not like being there most the time. I still encourage him to play and do something outside because if he had his way he would just play on the computer all day long and never go outside. The female coach was so good with him and kept him engaged the entire time (only 2 innings). She kept him busy playing high five games in the outfield and they let him bat the ball (his favorite part) first both times. I will continue to take him in hopes that he will either get to liking it but even if he still doesn't really care for it at least he is out of the house learning to do something other than the computer.
I had a bad manic episode the other night and literally stayed up all night long and finally called the on-call doctor at 5:00 a.m. and he asked me if I had any other psyche meds in the house and I remembered that I had some Attivan and he told me to take one and that I should insist on seeing my doctor that day. I took it and it calmed me down, I was able to get sleep and my doctor was booked solid until my appt. on the 17th. Now that I have the Attivan I will be able to sleep at night because the Melatonin is not doing the trick any longer. And I will not have a problem with mania because if taken as needed it will keep the mania away. I had been increasingly been becoming manic and didn't realize it, just thought that I was merely energetic so it slowly sneaked up on me. Regardless of what you have heard about mania being fun.........it is not for everyone! It is miserable because it feels like my heart is about to beat out of my chest, my breathing is shallow, and eventually the sweat begins and it feels like sheer fear physically without the fear mentally. I have racing thoughts and cannot think straight, can't focus and can only lie still until I have to get up to do only what I have to do..........like call the doctor and beg for help!
Griffin went to his first baseball game today and it was a mixed bag. He kept wanting to hit the ball instead of standing around waiting for the ball to be hit in the outfield..........can't blame him for that. Anyhow, the coaches and other volunteers/parents were super because they got him motivated (to a degree) and kept him in the game. I gave up trying to help him because he kept trying to have a meltdown so I sat in the bleachers and watched.
It is so great how they have things set up so that the kids can have success all the time and everyone is so helpful and motivated to getting the kids involve and engaged. I had forgotten my camera and that is why I only have him standing inside the apartment with his uniform on. Next week I will take pictures of him actually playing and a video too.
It was nice because it was in the morning so it wasn't so hot. Griffin already has a great tan going on and I sprayed very well with Bullfrog sunscreen. I realized why Griffin doesn't like going outside to play most of the time and my apartment manager pointed it out to me one evening as he was actually on the playground (she also has an autistic son). The weather was nice and cool and she said that that is why he won't go outside during the day and she is right because Griffin has a high tolerance to cool/cold weather and temperatures and has no tolerance for the heat. He loves his bath water to be freezing cold and will not get in if it is even warm.
So, from now on I am going to take him out early in the morning and/or in the evening before sunset and see if he will play. Unfortunately the other kids probably won't be out but at least he will be outside for awhile.
I was tagged by my dear friend,Jazzygal who has been supportive and helpful in times of need especially on Facebook. Thank you for passing on this Gratitude Award to me, I like to think that I am a positive person who is eternally grateful for what I have in life.
Here are the things that I am grateful for/my Gratitude List for this week:
1. Griffin and I have our medications finally straightened out!
2. I am grateful for the knowledge that I have about autism and that I know enough to protect Griffin from those who seem to not have his success and best interest at heart, therefor I am looking into a new school.
3. The weather is gorgeous and this is my second favorite time of year...autumn being my most favorite.
4. I was able to buy food for us today and coupled with the food from the food bank we should be set for the month. I am grateful that somehow we always end up with food in our bellies!
5. I am grateful that even though it is a fixed income, at least we have income as many people in the USA do not.
6. I am grateful for my dear friends on Facebook who are so supportive of me in times of need whom I have never even met in person but look out if we ever do because the world wouldn't be able to handle us! Especially after a few bottles of wine!!!
7. I am grateful that I get to talk to my parents each day....or several times a day.
Griffin is doing great now, he is on 5 mg. of Abilify and it makes such a huge difference! The moment I give it to him he straightens right up and his behaviors go right out the door. It is because I crush them ( the Melatonin and the Abilify) and put them in milk because he refuses to take pills for me. I just hope that as he grows older this won't be a problem at home just in case he needs to take more pills that might taste bad if taken that way. He will take pills for everyone else just not me ......of course!
I am doing great still and losing weight!!! I don't have a scale but I can tell because of the way I feel and because my pregnant-looking belly is going down, it actually looks less pregnant now.
The weather is great and I am trying to find ways to get Griffin to spend more time outside like taking Abby for more walks during the day over the weekend and going to my aunt's house so that Griffin can spend more time with his uncle Charlie. In fact, we went there yesterday and Griffin got to ride with Charlie on his scooter and he loved it! Griffin actually ate a tangerine while he was having boy time with Charlie. He wouldn't do that for me.
My friend Melissa wrote in her blog about kind of losing touch with her circle of friends/support of other moms of autistic kids and I feel the same. I wish that I had more comments on my blog so that I wouldn't feel like nobody is interested in reading about us and keeping in touch. I have lots of Facebook friends that I keep in touch with but it's just not the same. I have followers but I do wonder if they are actually reading the blog.....if you are reading this then I am hoping that you will stop for a moment and leave a comment....Please!
Here's Griffin with his favorite kitty in the whole world, "Dot". As Dot gets older she is more tolerant of Griffin and she allows him to handle her like this. He is such a ham in front of the camera, hence the funny face.
Since decreasing Griffin's Abilify, which was used for symptoms of bipolar disorder, he has been out of control with an elevated mood that causes him to have increased meltdowns. We are going to have to get to the doctor so that something changes. I was told that 5 mg. was used for children 10 and over but damn.....he functions better on it and I just can't take this!! I am sure that he is not enjoying it either!!! He is only on 2 mg. and it is just not enough so I think we are going to have to go against the recommended dosage or try a different approach medically.
I have found that giving him 5 mg. of Melatonin helps him to calm down when he comes home all wound up after school. It helps him to be able to focus better on his homework even though he still gives me a hard time about it. Yesterday he came in off the bus and I was on the phone, and screamed at the top of his lungs in my face! Then we had to go to Speech and it didn't stop, unfortunately I didn't give him the Melatonin right away and I sure wish that I had. He had some behavior problems with the Speech Therapist and she handled it quite well but he started again as soon as he saw me afterwards, because I didn't go into the session with them.
This is Griffin with Mr. Pumpkin, the Halflinger horse that he and I ride when going to Hippotherapy. Just a FYI.....hippo is the Greek word for horse so that's why it is called hippotherapy. Did you know that the Greeks have used horses for therapy since 460 BC? Yep, it has been around awhile and if you want to know more about it go to theAmerican Hippotherapy Association website. Mr. Pumpkin is an excellent horse and is lots of fun to ride, Griffin really digs it when he trots and laughs every time.
I quit taking Seroquel a few days ago and I AM A HAPPY CAMPER!!!! My life is sooooo much better because of it and I am so in awe of how I feel like a regular person and can't even tell that I have bipolar disorder and have NO sleep problems now. Because I take 2 melatonin with no side effects like I had when on the Seroquel. AND........I am finally losing weight because I don't have a ravenous appetite and a gnawing hunger all the time anymore!!! In fact, I am so happy that I have tears in my eyes when I think about how awesome my doctor is for caring for me enough to figure out how I can have a better quality of life! He is my hero and I am going to tell him that when I see him next week. I had been on Seroquel since 2004 when I was diagnosed and it has been nothing but bad news, no doctor has ever cared enough to get me off of it and recognized that it was the bane of my life!!!
Nothing but good news from me but now we've got to get Griffin straightened out and our home will be all good. Today I go to hippotherapy and look forward to it. I am going to have to go to the outside ring because the covered one is going to be used for a seminar. So, I will have to see if I can be out in the sun without breaking out in sun poison which means that I am allergic to the sun. If it doesn't work then I will have to stop going for 5 weeks until we can use the covered one again.
Hope that all my dear friends on Facebook are doing well and that you for stopping by to check out what's going on with us!
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Piggy Paint dries to a hard, durable finish that can easily be removed with our eco-friendly, low odor Piggy Paint nail polish remover. Both are made in the USA!
Available in an assortment of gift sets that are perfect for Holidays and other special occasions. Say good-bye to harsh, smelly chemicals and hello to Piggy Paint...it's as Natural as Mud.
Just click on the blue highlighted words and the link will take you straight to amazon.com where you can purchase this excellent product. I will get a small percentage of the sale if you order it from here and I would greatly appreciate if you did so. Thanks a bunch for stopping by!
Just write a short blog post about our programme “My blog is carbon neutral” and include one of the buttons below on your site (ideally in the sidebar). Send the link to your blog to CO2-neutral@kaufda.de and we plant a tree for you, neutralising the carbon dioxide emissions of your blog. The trees will be planted in the spring of 2010 by the Arbor Day Foundation. For more information about how and where the trees are planted, see the NEWS section.
Just a few easy steps to make it green:
Write a blog post about the initiative + insert your favourite button
E-mail the link to your post to CO2-neutral@kaufda.de
We plant a tree for your blog in Plumas’!
Note: We plant a tree for each domain. Please copy the html-code and paste it in your blog. Make sure the carbon-neutral button works, the html-code must not be changed. Use the carbon-neutral-white button for a white background or the carbon-neutral-transparent button for different colored backgrounds. If you need help, please contact CO2-neutral@kaufda.de. We are looking forward to planting your tree!
This Doodle Pro is Griffin's absolute favorite toy and has been for several years now. He has had one and worn them out over and over and generally takes it almost everywhere he goes. It is so useful because it is so sturdy and really the only way that they are worn out is if the pencil is damaged or it is stepped on too many times. Otherwise it lasts for a very long time, it is the best money that I have ever spent on him because the other toys come and go and his interest wanes but not with the Doodle Pro.
The "Best Price" is only $11.99 which is an excellent deal and brand new is a mere $17.95 well worth the money. All you have to do is to click on the blue highlighted words to order it from amazon.com. Besides if you order it from my blog then I get a small percentage of the sale......which I can really use!
1.Things that scare me
-Griffin being hurt/taken by someone
-Falling into water while in a car
-Griffin getting loose from me and running into traffic
2.People who make me laugh
-Griffin
-Mom
-Dad
3.Things I hate the most
-People chewing with their mouths open
-Exhaust fumes
-Being depressed
4.Things I don't understand
-Lack of compassion
-How someone could harm a child
-How anyone can harm an animal
5.Things I am doing right now
-Watching the dog and cat play together
-Listening to the news
-Missing Griffin, he just got on the bus, but enjoying the peacefulness.
6.Things I want to do before I die
-To own at least one horse
-Make sure that Griffin is set for life
-Grow very old
7.Things I can do
-Write an excellent research paper
-Paint
-Sculpt
8.Ways to describe my personality
-Considerate
-Loving
-Flexible
9.Things I can't do
-Listen to someone talk to me while the t.v. is on
-Sing
-Eat pork, I'm allergic to it
10.Things I think that you should listen to
-The crickets on a summer's night
-Elderly people
-Your children
11.Things you should never listen to
-Gossip
-Negative self-talk
-Propaganda
12.Things I'd like to learn
-How to write a book
-More foreign languages
-More and more about Griffin and autism
This is what I am now reading and it is compelling to say the least! Joseph Campbell was an amazing man who was so wise to the world and all its matrix. He shows how the world is all connected spiritually on so many different levels regardless of their religions and beliefs.
I highly recommend this to anyone and everyone because it is going to have something in it that you can take with you and learn about different cultures around the globe, their rituals and how those rituals are so similar to us all. It blends East and West and there he is right there in the midst of it all with all his wisdom.
Joseph Campbell was truly remarkable and I really think that you will become fascinated and be a great fan of his by the end of the book. This is a great price as low as $5.00 used.
All you have to do to purchase this book is to click on the highlighted "Best Price" or where is shows the title of the book "The Heroes Journey" and it will take you to amazon.com so you can order it at any price you choose, used or brand new.
Rebecca at National Autism Resourceswas kind enough to send me a sample of a pencil topper and this is the photo of it. Griffin loves chewing on it when he is doing his homework especially when he gets a bit impatient and frustrated. It is great because it is so resilient that no matter how long it is chewed on it maintains its shape so there is no need to worry about it breaking apart. I highly recommend it for any child who has an oral fixation and likes to chew on things or any child who gets frustrated when trying to accomplish something such as homework or even drawing.
Just follow the link above to get to the website or you can call 877-249-2393 for orders or questions about products. There is also a blog:http://www.NationalAutismResourcesBlog.com/where you can find excellent posts about autism. I have read several of their posts and I can tell you that I have learned quite a bit that I didn't already know. The posts are written in a very professional manner yet super easy to understand.
Take a look at what they have to offer, I highly recommend both the website and the blog because I am going to use them from now on. If you have any questions for me about the pencil topper feel free to leave me a comment or call the toll free number, they are very nice and helpful!
According to the teachers and ones who tested Griffin he is a child with Asperger's Syndrome. It is on his IEP (Individual Education Plan) several times but it is not official (as if from a doctor) so they cannot take services away from him. He tested quite high in all areas in limited testing, there was no logic questions in the math and no reading comprehension so he scored rather high. But when it comes down to doing everyday math he has a very difficult time and he struggles with reading comp. because he is hyperlexic.
My legs, ankles, and feet are so swollen with fluid that I cannot get on any of my shoes except for one pair of clogs and my hands swell pretty bad at night. The doctor didn't seem to be concerned and prescribed a water pill after I asked for one. This is the second doctor I have seen in two days about it and they have no answers. I can't wear those tight hosiery because it is too damn hot here. It has been in the high 80's to 90 degrees the past few days!
I had to go out and spend money I don't have on shorts, short sleeved shirts, and sandals for Griffin or else he would melt because nothing fits him from last summer of course. I had to get a few blouses for me because nothing fit me either.
I missed Griffin's horseback riding on Monday because he didn't go to school (Spring break) and I just spaced it out. And I totally forgot last Thursday that he had Speech. Some great mother I am!!!
UPDATE: Since I wrote this post I got my lab results back and my glucose is abnormally high, it is 121 and normal range is 69 - 100. I am worried that it means that I have Type 2 Diabetes. I have an appointment tomorrow (Friday) to see my doctor. Also my cholesterol is quite high even though I am taking mega dose of salmon oil and garlic which are supposed to help. It runs in the family both diabetes and high cholesterol. So I sure hope that meds can make a big difference. I went to the gym (YMCA) and walked on the treadmill hope if I can go often enough I can get my weight down.
During Autism Awareness Month, readers are sharing their perspectives on raising a child with autism. Today, Lora and Griffin's story. Griffin began showing signs of autism somewhere between 12 - 15 months as I noticed more and more that he was not responding to his name. I had his hearing checked and it was fine so I knew that it had to be autism. We began early intervention at age 15 months with lots of therapy and I spent hours on the floor playing with him. He had a spoon obsession, had to have a spoon everywhere he went, it was adorable but yet another sign of autism. He also had SIBs and would bang his head all the time and bite himself. I was a single parent from the get-go and had no support other than the women working with him each week. We lived in Anchorage, Alaska where there was no family and really the only friends I had were the women working with Griffin as I was isolated from the outside world. Autism is so isolating and then we were in Alaska so it was a double whammy!
Griffin was officially diagnosed by a developmental pediatrician at 18 months and began to receive more services. He made great progress but was still basically non-verbal at age 2 with only a few word sounds. When my friend Nina came to visit with her dog we had noticed how much Griffin enjoyed him and that he had NO SIBs when the dog was around. I was so excited! I talked to the O.T who wrote a letter to the regular pediatrician and he okayed it to have a service dog. So, I knew that I couldn't afford a trained service dog and didn't want to wait years to get one so having had a background in working with dogs. I decided that I could train one myself. I went to the local animal shelter and the first dog that we took into the pen was Valentine, a young German Shepherd who gave Griffin his space and did not lick him in the face. I knew that was the right dog so I named her Abby, easily trained her, and now we have had her 6 years.
Griffin is now high-functioning which I attribute to early intervention. He is in a mainstream classroom in 2nd grade and still has speech in school and privately and O.T privately. He loves the computer and is a whiz on it! I am still a single parent, Griffin is my universe but we get through our challenges with patience and compassion each day. We now live in NC near family and friends. Griffin and I both take hippotherapy separately of course. I am bipolar and have PTSD so I am on disability as well. Griffin took swimming OT classes since he was 3 until he was 7 years but they do not have it here in North Carolina so we do the horseback riding instead. He adores them....and his cat "Dot" too! Lora lives in North Carolina with her son Griffin. A jack-of-all-trades, she has been everything from a dog groomer and landscape artist to an on air DJ and ballroom dance instructor and many other careers in between! She is currently taking classes online and plans to get her master's in autism research.
I went to see my doctor deity two days ago and he told me that my extreme fatigue was caused by the Topomax that I was taking but I had my doubts because I was sure that it was my Fibromyalgia (flare up). Well, yesterday was great, after over a month of feeling horribly debilitated and useless, and I was full of energy....this is indicative of Fibromyalgia (the ebb and flow off good and bad days). But this morning I am feeling terrible again and I didn't take the Topomax which means that it is not the medicine....very discouraging!
Having Fibromyalgia is so frustrating in so many ways because 1. nobody can understand what it is really like unless they are going through it. 2. The doctors don't know what to do about it really because they don't even know what causes it. 3. It can be so debilitating and so painful that one does not even have the ability to function normally and take care of regular every day chores and activities. It is such a struggle just to make oneself get out of a horizontal position and do anything.
I am so happy and fortunate that my moods are stable in spite of feeling so bad physically. My doctor deity has gotten my bipolar meds straightened out so that there are no fluctuations in my moods. So very grateful of that because that is a major ordeal when it is out of whack. I am so blessed in so many ways and I am always aware of that. Just because I may feel bad physically doesn't mean that there is a reason to forget that there are so many blessing that we have in our lives. There is never a reason to not have a positive attitude and to not be thankful!
The weather here is gorgeous, it was 82 degrees here yesterday and it looks like it is going to be another beautiful day today. We are supposed to go to my aunt's house for a cookout where my cousin Charlie lives as well and boy, does Griffin love him! Griffin adores men and boys probably because there are none in his life as far as having a father or siblings. So I appreciate the fact that Griffin loves Charlie and follows him around like a little puppy. I try to go over there as much as possible so that Griffin can have some male bonding time. In fact, he is asking me right now if we are going there right at this very moment but we're not supposed to go until 1:00. He is so eager to get there.
