Oh dear wher do i start............ sean has been having probs at school he gose to a main stream school. Sean has been having probs with school he has ups and downs but school always look at the BAD side of sean :o( . today he went to school on his own we live round the corner from school no roads need to be crossed which is good ive let him do this as he wanted a bit more freedom. so we make a deal he gose in to meet up with his mates and i come in school with the other 2 kids and he always comes and see me. Today off he went happy little soul at 8.20am i was leaving school at 8.50 with the girls i meet him half way upset saying he has a "bad head" so i had to take him home give him some med and TRY to calm him down off went the other 2 with thier mates leaving sean at home with me i take him back to school an hour later becouse he is upset about somthing but will not tell me wouldnt go in so i had to take him to the offic and after 10 more mins of me asking nicly he went in........ me thinking that was the end of it till i pick him up that is out he comes crying they now want to take away the milk run from him ( he takes the milk to the younger kids like a little job) becouse he comes in late BUT he dosnt tho hes there at 8.30 then eather someone or somthing upsets him and he runs out of school ive told school that they cant just let him run out and come home what if i took a dif rote? if some one could give me some advice on this please :o)
http://www.djournal.com/pages/story.asp?ID=279599&pub=1 I am the Cheryl Bailey vaccine warrior in this..not much of what I actually said made it to print, but still something beats nothing. The other families are ones I know well and have worked with. Nice to finally get a break in a town that for years refused to run any local autism stories!
We all went crab fishing me hubby and the 4 kids we all had a good time sean didnt want to do the crab fishing he wanted to catch fish. so i gave him the bait and a net and off he went. he cought some crabs and throwed them back but he was soooo wanting to get the fish and then one by one out come the fish. his sister put a crab in the bucket and he went mad scraming and shouting he wants to go home but i fished the crab out and let him get back to fishing again. It was a hard day trying to keep sean calm around other people. But all in all we all had a good day. Well done sean xxxxxxx
8 years ago when Chris was first diagnosed I went through my own pity party. I had so many dreams for Chris and suddenly I felt they were dashed. Lots of friends, academic, athletic, college, marriage, children... I began seeing a therapist and she suggested I was in mourning for something that had died. I should let those dreams go and make other dreams of Chris. I never could get passed the present. Didn't want to think of the future because it was the unknown. Would he have to live in a group home? Would he be able to get and keep a job? Would he find love? My brain kept saying no, no, no. But the mother's heart in me kept saying maybe, maybe, maybe. I want wonderful things for him. I want him to experience all the great things in life. To have lots of friends, educated, travel,and love-- all the things that every mother dreams of for their children- whether or not they have special needs. Tonight is Chris's first dance at the high school and he has a date. He has gone to the movie with a couple of girls but they weren't what I'd call dates. But tonight he will go pick her up, give her a corsage and take her to the dance. They will hopefully dance the night away and he will think this is the best night of his life. That's the kind of thing I want for him. The excitement of a first date, the anticipation of a first kiss, holding hands and feeling oh so very special. Chris is not afraid of anything. He doesn't let a silly little thing like autisim hold him back. He is who he is and if you don't like it, that's okay with him. Oh to be able to feel like that! To not have to worry what others think. He doesn't want me to make a fuss over it. Doesn't that sound like a typical teenage boy? Me- I want to do his hair, and dab on some after shave (although he does not shave yet) and follow him to the dance. I want to be the fly on the wall as he dances with his date, brings her a cup of punch, and yes- even when (or if) he kisses her good night. I know he will tell me all tomorrow but to be able to witness it is what dreams are made of. The little guy who flaps his hands and loves Thomas and Transformers is growing up. This mama is so proud of him and he begins to spread his wings. I am so glad I never let go of those dreams I had for him. If I had, would I have caused him to be a different person today? Would he be withdrawn for people or negative? It really doesn't matter because he is who he is and I'll take him that way!
Eric is our youngest child who is 6 yrs old. He has a multiple of dx's sense he was 4 yrs old. Right now he is going through a main streamed class and is starting to show his behavior in the class room and at home, even at home we are frequently reminding him on how to act and behave in public places. My new motto is that if u don't like what u see then don't stare or I might bit u in the butt. I just don't know what to do with the school but we have one teacher saying onething and another teacher is saying another thing and now we have to do an intermediate iep now to see where Eric needs to be placed at. I knew that he wasn't ready for main stream kindergarten but noone would listen to me neither last yr nor beginning of this yr. Well now he is starting to lag behind on his academics skills and that when he has enough of doing his work he will simply not do it and just sit there
Words to live by spoken by a true mother warrior on today's Oprah. It is now one of my own mottos. Some days I can get so down about my life and do the woes me. Instead of looking at the negatives in my life I am going to focus more on the wonderful positives in my life. I don't want Chris seeing me miserable all the time. I don't like being miserable and believe me a happy Marcia is so much more fun. I am 46 years old!! YES! Okay what's so great about that? It's because I have lived 46 years and during that 46 years I have experienced so many wonderful things along with some awful ones. I had a normal childhood. My parents never divorced and we didn't move from town to town, house to house. We lived in a total of two houses growing up. I had a huge extended family that I learned so much from. Aunt Ginny taught me to bake, how to love life and to give of myself. She was a wonderful woman and I was very blessed to have her as my aunt. I vowed when I was young that I wanted to be the kind of aunt to my nieces or nephews that she was to me. And according to my nieces- I have accomplished that. My mom was a stay at home mom until I was in 3rd grade and even then she worked at the schools so she was home when we were. She was a great mom and I miss her to this day but she taught me so many things and I know she would be Chris's biggest advocate. She would have loved having a grandson since she had no boys. My biggest regret is that he will never know that. I met Jarl at just the right time in my life. We have been married 18 years, something that is sadly uncommon in this day and age. I won't lie and say we've had the best marriage, but we're solid. And besides we've been together too long to be any good apart. We have Chris who is the joy of my life. I don't even want to think about what it would have been like if we would never have had him. I always felt like I was finally complete when he was born. Like he was the missing piece of my puzzle. How ironic is that when the puzzle piece is the symbol for autism? My life is good and even with the rocky roads we have been down and I'm sure we'll go down more, I couldn't ask for a better life. Sure we don't have alot of money but I would rather have love and happiness than all the money in the world. (okay- a little more would be nice I admit) I have great friends who support me, laugh with me, cry with me, rejoice over the great accomplishments and cheer me up when I'm blue. Yep life is good and I am not going to let the little things make me miserable. So what if my house is a mess? Even with toys, shoes, blankets laying around it's our house, our home. As long as Jarl and Chris will be there I can be happy. Yes, I'm overweight but I'm doing something about it. I've lost 20 lbs. Okay- I can dislike my boss a lot but at least I don't have to go home with him!!!!! And I have my sense of humor. I have said all along that is what gets me through the worst days. If you can laugh at autism, you can laugh at anything. So when I'm feeling miserable I'm gonna remember that Chris is watching me. Do I want him to remember his mom as a miserable ole whiney or the fun loving crazy mom that I can be???
The Maine Autism Resource Fair is drawing near. I'm excited, nervous, tired, and loving it! People are signing up daily, the numbers are going up fast. This year I'm amazed at the people that are coming from out-of-state. MD, CT, NY, NH and even from out of the country. China and Canada. It's Dr. Vincent Carbone that's bringing in these people. I'm currently working on the press release which should go out in a few days. I think my only concern at the moment is the money, but I've sent out a few letters asking for sponsorship and I pray they come through. So many people ask me why I don't charge people. I just can't. I don't want anyone to ever say, "I can't afford it". I have some great sponsors this year, I certainly don't mean to slight any of them. This happens every year at this time, and it always works out. I'll let it go for now. Well, this is a great place to just take a moment and write.
I have added times for the workshops being offered. Along with some additions. Please go to forums then early intervention. If you are planning on attending and staying at the Gunstock Inn & Fitness Center please call to reserve your room as rooms are booking.
Lessons Learned by on 09.19.08 - public - 0 visits You never stop Learning. Just when you get one thing or phase figured out...here come 3 more for you to figure out...and then when your trying to figure those out, regression comes back and you have to relearn, what you already learned. So the one thing I have learned is it's a never ending process. I've also learned that my son's autism isnt just teaching me about Autism. But it is teaching me to be a better me...then I might have been, had I never known autism.... a cause bigger than Me. I have learned, Dont judge a book or a situation, based on appearance....because you may just be missing the main ingrediant or clue that reveals the whole puzzle. I'm Learning, that just being Patient...requires more patients and some things are worth the wait. But I still struggle with wanting things on my own time table. I'm learning that laughter is the best medicine...especially after sitting in the class of Humility. After your child jumps out of the public pool and decides they are done swimming and therefore the swimsuit is no longer required. Or Sitting through that one church service...when during the sermon, you son feels the need to run up to the baptistry, just to make sure there is still water in the pool....and your praying..Please dont jump in....Whatever you do....mom, isnt dressed for swimming this morning. I'm learning, That no matter how bad things may seem....somebody out there always has it worse than I do...and I need to focus on the positive...because this too will pass. Just last night, I was reminded that Sleep is an Option...not a Requirement. I have been taught that I can be an advocate for my child, and I can make a difference in his educational setting....and I have been educated from the school of hard knocks. Experience is what you get when you dont get what you want...which makes you wiser for the next IEP meeting and in the words of Scarlett O'Hara....There is always Tomorrow! I'm also learning....That everyday, should be like Christmas. Not about the gifts we recieve, but the gift of Love, we have to share with one another. All I need to do is look at the Christmas Tree in my Living room...and Here my son say...HO HO HO...Merry Christmas...In the Middle of September. He doesnt care there arent any presents under the tree, He just wants to decorate my house, and 2 years ago, he couldnt say that phrase. Miracles happen. So,Dont sweat the small stuff...or the small stuff will eat you alive....and pick your battles wisely, because Rome wasnt built in a day. I have learned, that is ok to Take a Vacation from Autism...Trust me it will still be there when you get back...the only thing that will change will be your disposition and your ability to cope. Supermom Doesnt Exist - Therefore I am an imperfect mother of an autistic child, but to my child I am his perfect mom....You know, the keeper of the Cheerios. If God had problems with his children...what makes me think its going to be easier for me? And one doesnt have to have an autistic child, to know raising children under any circumstance is a challenge....I'm reminded of this when my so called normal children, give me more gray hair than my autistic child. And the biggest thing I have learned and I'm still Learning. When I have to Let Go and Let God. I do believe, God is bigger than the boogie man....and Autism. Humans make Mistakes, God Doesnt. I was sent an email yesterday, and I think its pretty appropriate...Worry looks around....Faith looks Up. Thanks for letting me ramble....keep in mind...written and posted on 2 hours of sleep....because Sleep is Optional. LOL Lisa
I have been searching for Autism awareness jewelry everywhere. Some cute stuff out there but mostly cheap or chinsy. The cute stuff was way overpriced. So I decided to make my own sterling silver and pearls bracelet. (not cheap to do but soo many variations could be done) If they turn out well I was thinking of selling quality awareness jewelry using real semiprecious stones or pearls instead of crystals. Buying in bulk it could be done cheaper.... but doing just mine cost a bit more. Perhaps I will debate selling them to help offset Haley's therapy costs. Could be done in sterling, pewter, etc... Any color scheme,.... necklace or bracelet...... Any ideas? Pictures of my first two bracelets are up! The mixed one if for Haley's OT and the mathed flower one is mine.
I had a dream last night TONS Of buisnesses were selling the puzzle peices and then they all put them together on a wall, in symbol of P.O.W's of autism. instead of names of people who bought them we had names of KIDS on them....it was a prayer wall of sorts, I woke up sobbing in my dream a politition was walking away from an autism ralley, he was so half hearted about being there, (and it showed) I sat and watch as the crown milled with him being done, like this was nothing, like the parents, kids, family strutures ruined by autism were nothing important. I was literailly sick to my stomach.....i couldn't just stand there.... looking arounds desperate to do something I figured it was time this man KNEW and understood what autism DID to families, and that there were faces to go with this THING that had robbed us of our kids, and our next generation....I grabbed the man by the arms and just laid into him with words...I was going off on him, (about HOW DARE HE, apparently the title of this so called speach I gave him,) he couldn't look me in the eyes from his shame, I went off on HOW DARE he not look me in the eyes while he had the ability to do so and our kids didn't, how DARE he take for granit the ability to control going to the bathroom, or eating a variety of food, or feeling well, sitting and playing with his grandkids verses the alternitives we all have, how DARE he enjoy sleeping at night while moms get less then 2 hours of sleep while trying to calm or comfort a child in pain everynight, how DARE he enjoy the luxure of a clean fresh smelling room in his house while others clean fecal matter from their carpets and walls and celings, how DARE he go to the store and buy what ever is on the shelf while others spend hours reading labels, calling companies to find safe things for the basic necessities of feeding there kids, HOW DARE HE, have extra money to spend on things he doesn't need or want while we can't pay bills, give up houses, and retirement funds, and OUR futures just to pay for suppliments, meds, scrape to see specialist just so our kids can gain weight, function in school, talk, pay attention to life, not hurt, digest their foods, have solid stools, can say simple words or make requests for needs. HOW DARE he be so half hearted with his words with autism and how it effects america, when our kids HAVE no words to tell you of there woes, or how they fight for each one they have, while they drain the SSI funds for those retireing later, and live on disabilty and yet the serives are few and far between and after age 21 and they are disgaured as trash....while he puts on some special fundrasier for a CAMPAIN by people who have perpetuated some of the damage to our kids like drug companies ect.... at this point I am in a freezy and crying, the camara's are all on me, and it's being broadcast live. i am so worked up that I haven't noticed that the milling of people have stopped and everyone is stairing. parents of kids with autism that came to the rally in hopes of real change are bawling, connecting to all I am saying and amening it all....so I start pulling this man from family to family, starting with the ones closest to me, shareing their names, stuggles, listing what these families can't do, why and what programing they need that isn't being offered or not avalible because funds aren't there on a personal, state or insurence level, or workers not trained or avalible or lack of services providers. I do this with family after family so he see FACES of actual kids with autism, families members torn and crying from what it has done to there lives. then I look over and see my son who is sobbing seeing mom upset with tears that have soaked his shirt and he dodges towards me wipping MY tears away saying it's ok mom, you don't need to be sad anymore, my autism is gone, it's not here anymore.....and I turn to this man and say see THIS face, this is good old fashioned sacrifice.....not of YOURS, but OURS> we sacrificed our house, our kids college funds, retirement to get our son back.....we searched and begged for help., we pounded on doors and there was nothing....people, FAMILY turned there backs on us, Dr's booted us out of their doors telling us we were wasting there time trying this or trying that. that NONE Of this stuff is worth our effort or THEIR effort, BUT if we were willing to keep vaccinating, and just allow autism to continue to distroy our sons life and rob him from us and our family of BEING a familiy THEN they would support us.....this face (holding my sons face) is the face of change.....the face of standing up for our gut as a mom and chasing after it, giving our kids a future, a chance and living an americian dream, pursing happiness, freedom to BE a kid, standing up for freedoms to choices for our kids health.....this is the face or recovery. EVERY child in america and all over the world deserves this opportunity. are you going to give some half brained speach or really DO something about it........my son looked at the man and took his hand....he said mister, autism is poisen to america, will you help us.....the man shed a tear, hug him and walked away. I never thought I would hear anything more until... this man felt horrible and WAS guilted everytime he went to sleep, ate, shopped, sat with his grandkids, went the bathroom, laid in bed looking at his clean celing with out flung fecal matter hanging from it ect.....Oprah called and I first figured it was a mad attack from some high fuctioning families out there saying HOW DARE I pose autism as such a misery and they were all happy go lucky and loved how they were. only to find that this man had me come on oprah to aplogize on national TV along with a new bill for autism and our families, as well as money's that were donated to his campain from big pharamacies given to us to refund us for the 20,000 a year we go into debt plus pain and suffering as a public appoliogy saying he couldn't live with himself to keep the money. oprah was announcing the new scholarship program for autism, to help defer costs for families, allow for speical cleaning serves for fecal smearers, and respite care for those weary moms up late with kids ect. ARI was announcing to oversea a new scholarship program for those doing DAN with oporators standing by to walk any and all interested in the program through it, to connect them with certified dr's AND the government was funding and building branch places all over the country for biomedical hospitals of sorts with specialists at each working hand in hand with DAN dr's to FINALLY give our kids services, ALSO FREE and covered under this new policy.....saving a generation and a real move for change. I literally woke up to this soaked in tears......my whold body tremeled from the anger, from the relief of anger and real help and then I realized I woke up.....not wanting to be awake....
Calling anyone that would be willing to speak about IEP's, advocacy, etc for the Autism Family Fun Weekend on October 9th-12th, Gunstock Inn, Gilford, NH. If you are interested please let me know.
I have been searching for quite some time now to find a physicatrist(sp) for owen. Everyone i call seems to say they dont treat children. If i dont find one soon i will be forced to travel 6hrs just to get him the meds he needs. I live in southern maine is there anyone out there that knows of some one who treats children??
Please go to the forum section under "Early Intervention" to see complete details.
I have been asked to get some families together for a HUGE one page article in the local newspaper- all about Autism. I think this is a long time coming, and it is about time someone stepped up to the plate and took on this assignment to alert the community. We would like for people to know about Autism and understanding the disorder seems to be a priority in my town right now. When I tell someone that my daughter is in the Special Ed program at Clearview School, they get that blank look on their face and they stop listening. We will let the community know that we have several families in town and in the county that all have the same needs, the struggles we are having at school, trouble finding things, etc etc. because the town needs to be informed instead of assuming that Autism is "just one of those passing trends". The other part of my good news is that I have volunteered to start a newsletter for the parents of Special Ed kid in our school system. I am a member of the Special Ed Parents ADvisory Board ( some of you know) appointed by the City council. We have meetings every month and the same members come each time with an occasional visitor. This newsletter will give the parents a chance to find out what goes on at the meetings. I will have a space for websites ( website of the month) and of course will mention you guys. I will tell parents what went on at the meetings and then invite them to come to a meeting next time. I plan to give resources on where to go to find help and find out what they need. I think I am going to call my newsletter THE SPECIAL ED ition I went through several names and that is the one that I think I will use. If anyone has any input that I can use, please send it. If not then support is what I need. I have not done this since high school, so I will need help and thoughts and prayers and all the support I can get. I just want to get the word out there that we are here and we need help- not just Autistic parents but all Special Ed parents. Please support this !!
Posted By : EMMIESMOM on 08th Sep 2008
So I have been shopping... a lot...... I am trying to find patterns, inexpensive ready made, or suggestions for a toddler sized weighted vest and a twin sized (and throw sized) weighted blanket. (suggestios and directions very welcome!!) I know how much weight to use, I know what materials are deemed safe for very young chewers... but I can't find the blanket, pattern, or seller thats reasonable. What is with this? Why does it cost $150 or more for a blanket for a "differently abled" kid? Why would a vest be nearly as expensive? And talk about ugly!! So I gave in.... I am making a weighted blanket using a Navy surplus wool blanket ($20) with a cotten quilted top (free from a catalouge order I made a while back) and a super soft (I-don't-know-what-it's-called) baby blanket material on the other side. Haley picked it out herself at Joann's today (thank goodness for sales cause that alone was as much ($23) as a ready made blanket at TJ Maxx, which she didn't like and had to be returned though I would have adored it!). Then came the vest. I broke down and bought a pattern for a normal vest, kinda trendy and cute but not really practicle, though the only one I could find under 10$. The pockets we will have to wing it. The material for it: two ultra cute and soft corderouy fabrics also on sale at Joanns (will think of a summer weight one later). Then comes the weight for this pretty little project. NO ONE carries poly weight pellets. I had to order them online from an ebay doll dealer to get the best deals. Everyone else wanted about $6 for a little less than a pound of weight. I got 10# for 19.99 (with the shipping). Now there is enough to make more than one vest or add to it as she grows..... Speaking of.... she was 37.5 inches the beginning of the year and 39 yesterday! She will be outgrowing these things so fast our heads and bank accounts will hurt! On the up side.... I found the chewlery online decently priced and ordered her one to help save her clothes and shoes, and toys and fingers..... you get the drift. The chew tube wasn't a big hit, but I hope this goes more her style. On the topic of chewing.... she bit her finger a little while back, left a white half circle growing out by the base... appears this afternoon that she will lose that nail, and I do not see one coming in behind it. Anyone had this issue and know if she will grow another one in or should it be checked? We already had to take her this week for weird tummy troubles. Soo enough rambling for one night I think....
Today I got a call from my oldest daughter, we had some rough times these past couple of months and things are slowly getting back to normal. She is doing her grad work at Grambling State University were she graduated from in May. Right now she is doing intern work at this center and she has a few cases she is working on. One involved three girls who live at home with their mom and her boyfriend at this present moment. They dont have much and the oldest girl is working as a sigh prostitute to help make ends meet, thesecond oldest is missing so many days of school its sad due to her not having a uniform and the youngest is making do the best way she can. My daughter said "Mom I never knew just how good we had it growing up. I know we are not rich nor we are worse off then this family but no matter what you and dad have always made a way for us to get what we wanted, and what we needed and I should have said thank you more often. I just sat back on the phone and smiled and finally said sweet heart you are welcome. I am going to get a care package together to help her with the young girls, going to go to the dollar store to pick up toiletries, pencils, pens, paper, get them a net spend card and add a few dollars to it so they can go to walmart to pick up some undergarments, and the hair supply place to get things for them to get their hair braided. It feels good to know that I have instilled the kind of love I have for helping people into my kids and hoping that one day they can make a difference.
If anyone is in Rensselaer County, New York; Please plan to attend our "Fun-Day" benefit. It is at the Stephentown Fire Company Pavilion, on September 20th from 1-4pm. Tots the Clown, Bouncy Bounce, Pony Rides, Outdoor games, Children Activities, food, 50-50 Raffle, Bake Sale & Autism related items for sale. Roy McDonald, Assemblyman of Rensselaer & Saratoga Counties will be there also. I attended a forum hosted by Roy at Lansingburg Middle School, and was extremely impressed by his enthusiasm in making people aware of the necessity formore funds, care, special education, etc. needed in New York State. the numbers are currently rising and by the end of 2008 will reach approximately 1-100!! "Ammy's Little Lighthouse", a Christian Day Care in New York is hosting the benefit, and Roy McDonald is co-sponsoring our efforts. Hope to see your there!!
He has been labeling flash cards and he said mom about the mommy and daddy flashcards. Then the breakthrough, he saw a few different pictures of me and said mom!!!! I'm so excited, because this is a first!
