Friday, March 31, 2006
Here's What the Experts Are Saying About Parenting Your Complex Child:
Lots of good information in navigating both the school systems and working with the medical community.
Temple Grandin, Ph.D., Author of Thinking in Pictures
This is a thoughtful, thought-provoking, well-written and really helpful book. It will be of great interest, and of great value, to both parents and professionals. The author, the mother of a difficult, mixed-diagnosis ("complex") child perceives the terrain as a series of battlefields, and proffers her book as a "peace plan" that will minimize combat injuries to all parties, especially the child."Well done! I like it!
Bernard Rimland, Ph.D.Director, Autism Research InstituteFounder, Autism Society of America
Read more about this fantastic upcoming book at: tp://www.parentingyourcomplexchild.com/Books_Materials_4_Sale.html
I highly recommend that you purchase this book, it will change your life and help you with your child(ren) and his/her/their special needs.
Thursday, March 30, 2006
Griffin is still enjoying his O.T. with Gayle in the swimming pool and he is doing a great job with it as well. He actually went underwater and didn't get frightened. It is so much fun to watch those two in the pool having such a great time together. It seems that no matter what Gayle asks him to do in the water he complies and seems to do his best at pleasing her. The exercises that they do seem so simple yet I know that they serve a higher purpose. I know that I have said it before but I am just thrilled that we have Gayle as Griffin's O.T. there's no way on earth that we could have found an O.T. as skilled, as committed or as caring as Gayle is. Our lives have truly been enriched by having her around as Griffin's Early Intervention O.T. and now as his private O.T. We are very fortunate indeed. Just in case you are wondering, I am almost ready for the trip to the lower 48 (N.C. & S.C.). All I need to do is to run errands on Friday and Saturday and to pack the last minute things, the things that we use everyday. Gosh, I sure hope that everything goes as planned but there is that saying : the best laid plans of mice and men. Did I get it right? Well anyhow, what I meant was that when you plan things, they ultimately get screwed up and one can become quite disappointed due to expectations. So, I am going to hope for the best and be prepared for the worst, that way I have all my bases covered. See ya soon, Take Care All.
Tuesday, March 28, 2006
Griffin has been spending more time reading on his own lately. Most of his books are kept in the bedroom and here I caught him reading to himself aloud. As of late he has been opening the books and saying, " Once upon a time...." and then actually reading the book. I am getting a bit anxious about our trip and about how well he is going to do but I am hoping that by bringing all the things that I listed in my last post plus lots of books that it will help him stay occupied. I have had a bit more anxiety than usual the past few days due to the fact that I increased my medication for my Bipolar disorder and the side effects include something that is called, Akythesia which means that I have excessive restlessness. Not just the usual kind that one might have after too much coffee but an extreme kind of restlessness that literally keeps me from sitting or standing still. By the time that I have finished writing this post, I will have gotten up to move around about a few dozen times and that is, to say the least, quite aggravating. It is really hard to focus on something when one has to get up so many times but I am determined to finish this post so I'll get by. I am also feeling a bit anxious about seeing my family after 4 years because, well because I am feeling anxious about everything at this point in time. It's not that I feel bad in any way about seeing them but it's a happy sort of anxiety that I feel one that keeps me on pins and needles in eager anticipatiion. My ANP (Advanced Nurse Practitioner) said that I should decrease my medication so as to not have those side effects but I am worried about my depression coming back. It is such a roller coaster being Bipolar and especially since I am a rapid cycler which means that I can go from really down to way up high in a matter of just a few hours. Imagine that folks, it is not a lot of fun. Well, enough about me and my disorder. I am going to go kiss my sweet sleeping angel and then I'll be cleaning the apartment with all this extra energy that I have.
Friday, March 24, 2006
Griffin had a case of the giggles today during speech with Lisa. She was asking him, "What comes next?" and showing him a series of 3 cards that are meant to go in a certain order. I guess that he either found it to be too difficult or lost interest because he just kept giggling and being silly. That is until she brought out the numbers puzzle and used it as a reward and boy did he pay attention then. He all of a sudden became much more focused and started to work with her on what she asked of him. Lisa is just an amazing SLP and knows exactly how to get Griffin to respond and when he needs a break. I am so very grateful that we have her on board. Thank you Lisa, your the best! I think that part of the reason that Griffin had some difficulty in focusing is because he had some tummy problems for the past 2 days and couldn't keep any food in him. It must have been some kind of stomach virus because we have been going through some diapers! We were invited by Kathleen to her church to go and listen to a symphony orchestra and it was wonderful. Griffin tolerated it for about an hour and then began to scream and cry so we left, it was his bedtime anyhow. Gave him a bath and then he zonked out. I have been trying to prepare for this trip and am still wondering how I am going to keep him happy on the airplane during the day. I could use some helpful suggestions from anyone who has traveled by plane with a young child who doesn't want to sit still.I bought him a portable DVD player and he has his V-Smile too but heck, those will only last so long and he's going to get bored with them. I am considering giving him a quarter of a tablet of Dramamine to keep him calm. I am not fond of drugging my child but I think that it would help him to be able to sit still for the very very long flight home. I had asked to get a red-eye flight in both directions but the travel agent only gave me one and couldn't arrange the other. So, the flight out of Alaska to Atlanta won't be a problem because we will both be sleeping. I just got a shirt from Cafe' Press that reads: Proud Mom of Someone with Autism. I am going to wear it on the plane so that everyone knows that I am with a very special little guy and I am proud of him regardless of what they may think. That is if he is screaming and crying on the plane and I am not able to get him calmed down. We are also going to take Griffin's service dog, Abby on board with us. I am hoping that her presence will make a difference as it always has in every other situation. Please, if you have any suggestions/comments about what to do on the flight home for about 10 hours, I would love to know what you think.
Tuesday, March 21, 2006
Sunday, March 19, 2006
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn.You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.Your are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then,whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changes. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as"special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials wecould find. We know "the" specialists in the field. We know "the"neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are testedfor them. Without formal education, we could become board certified in neurology, endocrinology and psychiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove the insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate withtheir diagnosis.We have learned to deal with the rest of the world, even if it means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have tolerated mothers of children without special needs complainingabout chicken pox and ear infections. We have learned that many of ourclosest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "A trip to Holland"and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and re read them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front door on Halloween, and we have found ways to help our deaf children form words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yulelog with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy.We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in like knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass throughthis world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands and together, we special mothers and our special children, reach for the stars.
This is, so far, quite the boring post and I don't know how to make it more interesting because there's not been anything happening lately. Everything has been going so well that there's nothing to report or it's just that I have zero creativity in this brain of mine right now. I am thinking that it is the latter and I am going to blame it on my meds for my Bipolar Disorder. They have, over time, caused a marked decrease in my creativity level. I used to be so artistic and could create something so easily and upon demand but not so anymore. Now, I understand why some people go off their meds because they feel that they have lost their knack for something.
I am going to end here before I bore you to the verge of tears.
Hope that you are having a great day and thanks for stopping by to have a read.
Friday, March 17, 2006
Griffin had a good session today at speech with Lisa, they worked on attributes, pronouns, and recognizing animal sounds. Also she played a game with him kind of like hide and seek where she would put a toy on, in, under, and behind something and Griffin was to name where the toy was located. I don't know what the proper name for what he was learning is but I do know that he was catching on to it quite well. It was so amusing to watch him close his eyes as he was playing the game with eager anticipation as Lisa would hide the toy and ask him where to find it. Griffin is really catching on to learning his possessive pronouns too and with distinguishing his from hers, and boy from girl.
Today we will be going to O.T. again and I can't wait to see what Gayle has in store for him. I am sure that it will be something fantastic because she is such an incredible O.T. and a great friend to Griffin.
Hope that all is well with you and that you have a smile upon your face today. Ta Ta For Now!
Wednesday, March 15, 2006
Here Griffin is working on buttoning his oversized painting shirt. He actually got three done without any help at all and they were small buttons too. Gayle is here with him, she is his O.T. She got him to eat raw broccoli, if you can believe that! Gayle modeled for him and ate the raw broccoli and made ummm sounds and cute faces and he actually imitated her in every way. I was quite pleasantly surprised, no, I was shocked that he ate raw broccoli! On top of that he ate 2 pieces!! Griffin is really into the vestibular (swinging) so Gayle put him in the platform swing for awhile which seems to have a calming effect on him. Then she put him in this huge hanging ball pit that was made out of lycra and boy did Griffin love that. She would put pieces of a puzzle in the ball pit and he would have to search to find them and then was rewarded by putting the pieces of the puzzle in their place. Hope that made sense. I would put the photos of all the other activities that I have mentioned but I am just no good at putting more than one photo in a post at one time for some reason. Maybe I will put them in a separate post up above this one. Anyhow, the pool where they usually go swimming is being repaired so they won't be going there until maybe a week from Friday. Otherwise, everything is going just peachy . Griffin has had no, I repeat, NO negative behaviors in at least 2 weeks if not more and boy am I ever proud of him. He has been such a sweet angel lately. I have been a happy camper too because his happiness is absolutely contagious and his laugh is infectious. Hope that all of you are feeling happy too, have a great day!
Friday, March 10, 2006
This is a letter from my mom:
How do you begin to express how much you love a little sunshine that only comes in your life by the new technology of a web cam and words. But this little man came into our life 4 yrs ago and it has been a joy to watch each new thing he takes delight in achieving. We have never seen Griffin except by photos and the computer cam but I am thankful for each day we get to enjoy seeing him. His joys of the videos he enjoys dancing to and the singing with his own words that maybe sometimes only he enjoys. And once in awhile he will say "I love you nana" on the phone or "I love you papa". Of course he doesn't know us but I do hope that will change soon and he will really get to know and love us in person and hopefully remember that he is so very special to us. When that time comes I will be able to explain to him what a wonderful mother he has she has devoted her life to her little special "sonshine". She has been in Alaska for 15 yrs. And the last time we saw her was when she was expecting her little miracle. Of course she had no idea how her life would be blessed when she left here with her eyes full of tears as well as mine. But I knew god was going to bless her beyond her wildest dreams. I have told her for 4 yrs that that Griffin gives her the special and she gives him the needs. So therefore that is the way we look at our very special needs grandson. His life is happy and there is only two things that could work this miracle and that is god that gave him to our daughter and only he knew exactly which mom to bless, one that he gave hardness that allows her to keep going when every one else gives up, he gave her sensitivity to love him under any and all circumstances, and most of all he gave her tears that she can shed anytime she needs to whether happy or sad Griffin will always notice it's because she loves him so very much. And the second thing that makes this little man so happy is that he truly knows his mother will always be there. Hopefully the day we meet him will be soon and a very anxious one for us all. With all our love to you Griffin and of course Lora whom we also miss very much. We will have a lot of catching up to do, hopefully some long talks and some walks to the lake. The older you get the more you realize how little time you really have to squeeze in all those lost conversations and the family times . Our love unconditional, mom.
Thursday, March 09, 2006
Tonight he has lots of energy and is running around talking (mostly unintelligible) and singing while watching Zoboomafoo. It seems as though he knows exactly what he is saying and says it with conviction. It's really quite entertaining to watch him while he plays pretend with his little Sesame Street characters in his little hands. He has been pretending to feed them, give them a drink, and make them fly through the air. I only wish that I could understand what he is saying and look forward to the day in which I can. Oh, and by the way Eileen, my favorite flower is the daisy too. I will be using images of daisies on the blog when I don't have a current picture of Griffin or just for fun. Hey everyone, have a great day and "stay tuned" because soon there will be a new post , a letter, from someone very special in Griffin's life.
Sunday, March 05, 2006
My Dearest Griffin,
I remember the day that you were born, the joy that I felt was so overwhelming I thought that I would burst. Tears of joy streamed down my face and I knew at that moment that you would be the center of my universe for the rest of my life. You are my "Sonshine" and the love that I feel for you is so intense there are no words to describe it. It has been just you and me kiddo, and even though we don't have much we get by and perhaps we are much stronger for it. Griffin, you have enriched my life beyond compare. You have been a teacher to me that is, you and your autism have taught me about many things but mostly about myself. I have learned to be tenacious , strong, gentle, compassionate, patient, understanding, and a good listener. I feel that you have taught me far more than I could ever teach you. For this I must say that I am grateful. There is nothing in my life more precious than your laughter. When I see you smile and hear your laughter there is no autism. All I see is a beautiful child filled with the quintessential perfection . You are as perfect as the day you were born, you are exactly as you were meant to be. No one can tell me that you have a problem, a disease, or that something is wrong with you. I see you, I understand you as Griffin with autism and if it happens to go away one day then it will be a day of celebration but if it doesn't then you are still my perfect child. You see my love, I have no expectations of you. You will progress at your own pace and I will be happy for every step that you take be it big or small. I don't know what the future holds nor do I want to plan it out as if I know what will happen. I want for us to take it one day at a time and cherish each moment in that day. What I wish for you my sweet child is pure happiness . Since you are autistic then let us celebrate your differences, let us have pride in who you are, let us let the world know that autism or not you are Griffin and that you are an individual who deserves respect and recognition as a human being and a part of our society. You may or may not be able to live alone or drive a car one day but you might be a writer or a mathematician. No matter what you end up doing you will be successful in doing it, I know. There is one thing that I do wish for you to learn and that is to understand what danger is. If you could learn that Griffin your mommy would feel more at ease and more secure. Otherwise, I think that you are the most fantastic creature on the earth and that I have been blessed with you.
With All My Love Forever,
Saturday, March 04, 2006
Wednesday, March 01, 2006
It was too late, he had already gone in his diaper before taking it off but what the heck, that doesn't matter. The point is that he tried to go, he made the association all on his own and boy oh boy am I ever proud of him. He was quite proud of himself too, he was just beaming with pride, grinning ear to ear. So, as far as I am concerned I believe that he is pretty darn close to being potty trained when he does stuff like that all alone. Way to go Griffin Blaise! YIPEE!!!!!
Another thing that he did tonight is that he asked for his blanket that my mom had made for him and he had never done that before. I had to call and tell my mom right away. That is just so special! I am grateful for my beautiful child Griffin and all the wonderful surprises that he has for me , his smile and his laughter too. Wow, I have got to be the luckiest mommy in the world.