Monday, October 29, 2012

discouraged

Feeling discouraged and helpless today!!!! it has been over a year now and we are still looking for Matthew something to occupy his time. we have completed working w/vocational rehab and have hit a dead end as far as any other programs for him or any job opprotunities. i don't know where to go from here at this point. i am disappointed in myself, my community, and my state at this point. there is just no services available in mississippi. i continue to pray for encouragement and on opportunity to arise so that Matthew can continue his learning and social interactions. so far we are still at a standstill. the university where i live has been of no help, the vocational rehab center in my community has also been of no help. all i hear is "i am sorry", "there is just nothing in our area". where do i go from here!!!

Friday, February 26, 2010

How long has it been???????

Friday, February 26, 2010
How long has it been???
It has been ages since my last entry.... We have been soooo busy.... the time just seems to get by without you realizing. Its true what older adults say that time does really fly the older we get. Each day should be cherished and welcomed with whatever comes along with it.
The last time I blogged we were attempting to get Matthew into a vocational rehab training program. The Lord has blessed us. We found a program and Matt has been enrolled since January. He is attending a work program with a "job coach" that helps him with tasks, understanding directions and observes what some of his capabilities are. He attends three days a week and returns to school the other days. This is part of his "transition" into the world of adulthood and responsibilities. So far he has been doing well and hopefully by May he can transition from school/training into a part time job in our community. He has been very excited about the new experience. At first he was a little unsure about the whole new concept of being away from his school and the people that he was accustomed to being around. As you may remember, Matt graduated last year but he was allowed to return to school to work this year on transitioning from his usual surroundings at school into the next phase of entering society and adulthood.
After he attended voc rehab for about a week he seemed more at ease and even was excited about going. He and his job coach have been working with office related tasks, cleaning and putting together small parts. He is paid minimum wage for what he is doing in training and my husband and I are attempting to teach him how to sign his name to his check, and go to the bank. That part is a slow process but we will accomplish that in due time. Matt has come such a long way in his growing up process. I remember being told that he would never be able to carry out daily tasks such as getting dressed or bathing himself. We have come along way baby!!!!!!!!
God has blessed me with a wonderful young man that has touched my life and everyone that he has come in contact with using his determination and his joy for life. Each day we offer a prayer of praise.
To others struggling with discouragement or doubt about your children with disabilities I encourage you to never give up. Each day is a new experience that can be used to some advantage whether it be for social skills, opportunities to learn even the smallest of things. These special children are capable of picking up so much that we are not aware of and they see things that we in our busy world often miss. I truly believe that we are not here to teach them but they are here to teach us.
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Wednesday, September 30, 2009

Hello!!!!!
Sorry I haven't posted in a long while. We have been busy, with me working nights and Matt doing vocational rehab it has been quiet hectic. In the last month I have taken Matt to visit his physician for his yearly check up and discovered that his blood pressure is elevated. That day in the doctor's office I thought it was elevated because he was apprehensive about seeing the physician. As an ICU nurse I have seen elevated blood pressures that were danger level compared to Matt's so I tried not to worry. Our physician instructed me to check it daily for about two weeks and let him know how if was doing, especially if it remained elevated. So for the past week we have been checking it religously and it has been elevated. 140's-160's systolically, 90's-100 diastolically. Now after a week of running that high I have started to worry and wonder what could be causing this increase, and I have come up with nothing. So the only logical thing to try would be to start him on a low sodium diet and cut back on his caffiene intake.
Matt started the low sodium diet Monday and two days into it has been doing well. He has been eating fresh fruits(can't get him to eat the veggies), drinking water and sprite(no caffiene) and has decreased his amount of fried and salted foods.
I am hoping that this will do the job. I hate to think of him having to take bp medicaton at such a young age. I have never experienced hypertension with anyone his age before. I know that persons in their teens and twenties can have issues but it is usually related to heredity(family members w/bp problems at a young age, or some type of medical condition.
We are hopeful that the diet will decrease his pressure. He is already taking medication for with his autism and hate to start him on anymore meds unless it is necessary.
If there is anyone out there that has a child(young adult) with hypertension please leave me a comment and let me know what is working for you.

Oh and did I mention that since Matt has gone low sodium so has yours truly. Can't expect him to do it if I can't set and example.

Here are some of Matt's favorite low fat foods
Sweet potatos
banana
yogurt
baked Cheetos
grilled chicken

To anyone else that may be on a low salt diet good luck and remember low salt =140mg or less per serving of sodium.

Wednesday, September 9, 2009

I have been on the net this morning viewing teaching options and programs for children with autism. I have decided that the prices that are being charged for the programs/packages are expensive. What are families to do that cant' afford the programs. A large majority of parents with autism are one income families and the children are at times home schooled. Each ad i saw states that our program is the best... our package is the one to use and it works. If you want my opinion and I am sure my opinion does not count for much...Keep your money and use things around your home.
When Matt was little there were no teaching programs to aid with autistic children, if there were we weren't aware and definitely couldn't afford them. I used things around the kitchen, on tv, outside, magazines, anything I could get my hands on.
I remember being in the kitchen and using cans out of the pantry to show Matt pictures of what was on the label and encouraging him to say the words. The best part for him was that he got to pull all of the cans and packages out of the cabinets. He loved it. It was really hands on. We would use magazines and look at pictures and cut them out and paste to construction paper. He loved going outside and touching different things...grass, leaves, flowers anything that he could visualize and touch could be put with words as long as he could relate the word with the experience. Then came the music. Any learning program for children with songs was always on at our house. I hate to say it but Barney the purple dinosaur was one of his favorites and it encouraged him to want to sing along with the show. As the years went by other shows, (Blues Clues, Dora, and Sesame Street) would hold his attention and I would try to help point out colors, words, or objects that he would see on the show and again he would relate to them because he could sing them or associate them with the show. As he got older "country" music has become his love. I am not sure what I can relate to him from that music butI can say that it brings him much enjoyment. Not so much for me because like most teens he likes it LOUD. Encourage your children to participate in daily activities around the house. We would make the beds and play "tent time". This encouraged making the bed and it gave Matt a sense of helping do something which in turn gave him a sense of responsibility and pride.
Now that he is older I have had to incorporate new things for him that hopefully will help him out in the world. I allow him to pay for items at the store, help find items on the shelves, find sizes of clothes by identifying with S,M,L. Some of these "learning programs" may sound corny but I have found that they have worked for us over the years and have saved me a lot of money.
I hope that other parents and teachers for that matter can also use everyday experiences to help teach and identify autistic children's likes, dislikes, strengths, and weaknesses in order to help better aid these children with language skills, social skills, and with the run of the mill activities of daily living that we all must take part in.

Friday, September 4, 2009

I have come across some very disturbing literature today and feel as though I must share it.
While looking up articles to post on my twitter page I came across one related to treatment of autism, and like most I assumed that it was related to diet or probiotics or the usual treatments that have already made their way to many families. However this was not the case. After reading this I was very troubled and found it hard to believe what extremes families would go to in order to "cure" autism.
The article was about the drug Lupron and the belief that this drug can rid persons with autism of their symptoms. I also came across a physician that has been trying the treatment on patients in his clinic. For those of you who are not familiar with Lupron, let me give you a little background on the medication.
Lupron is a gonadrotropin releasing hormone analog, which modifies the release of pituitary FSH and LH hormones. Now in english this means.... FSH(follicle stimulating hormone) and LH(lutenizing hormone) are related to puberty by causing the females eggs to be released and secondary sex characteristics(facial/body hair, etc) to become present. A 2005 study suggested that Lupron can be used as tx for autism due to the belief that mercury causes autism and that mercury binds to testoserone. By giving Lupron testosterone levels can be lowered thus improving symptoms of the disorder. This has not been proven!!!! Let me repeat.... THIS HAS NOT BEEN PROVEN!!!!! Lupron has been suggested as a treatment to reduce sexual urges of pedophiles!!!
I would much rather try the drug out on the pedophiles than children with autism.
I know that their are many parents/families that will do or try anything to help their children but please be advised that their are many claims out there that can "cure". Always, always look into something and do not take a physicians word or anyone else's when it comes to your child's health.
So many people want to "fix" what is wrong and never stop to think of the impact it can have. That is one of the reason's I promote parents to love and build on the abilities of their autistic children rather than to "cure" them.
I know that many families believe differently than myself and that is their right but I do urge them to not jump into the fire without seeing how hot it is.

Thursday, September 3, 2009

Hello All,
What a day. Matt and I have been cutting the lawn. He is such an enormous help to me. His vocational rehab is going well at this point. He has been working the concession stand at the local high school each day. He does require help with making change and has supervision but non the less he is participating and enjoying it to the fullest. I myself have been posting blog sites and web sites, along with news for families to read and further research on twitter for the last several weeks. I am really enjoying reading the articles and posting them; hoping that they may somehow help others with autistic children and young adults as well as parents.
Matt has been such an inspiration for this endeavor we have started together. He and I want others to know that autistic children can overcome (not cure) their disabilities by using the talents that each have to help others and to inspire.
We hope that our page will show how we celebrate Matt's abilities and not focus on his disabilities and through this encourage others to do the same.

Wednesday, September 2, 2009

Has been awhile since I have posted an update, but don't know if it really matters. I am feeling a little discouraged again with the blog page. I am beginning to wonder if I should just call it quits with the page. I started it to meet other families with autistic children, and share stories of Matt. I have shared stories, but not received any feedback. Haven't met any families through the page either. Maybe there is something else Matt and I are suppose to do. I know that God blessed me with Matt for a very good reason. He touches so many people in a positive way. I thought that the page would be a way for him to continue to reach others, but am not so sure that this is what God had in mind of us to inspire others. Just trying to determine where to go from here at the present time.

Friday, August 21, 2009


Oh my, it has been a while since I have added anything to our blog. We have had alot going on recently. Matt started vocational rehab two weeks ago. He has returned to his high school but will be receiving his rehab there with a wonderful counselor. He has been working on his art and music, along with work skills by helping work in the consession stand at scheduled breaks. He is really glad to have something to do instead of staying home with me everyday.
Matt has been meeting with our pastor over the last month after expressing interest in being baptised. That has gone well and he and our pastor have become "pals". They have had talks regarding how much Matt understands about his faith and the purpose/significance of bapitsim. After several meetings and some practice Matt was baptised last sunday. I was soooo proud.
My baby grown up so quickly. His autism may have made life somewhat different for him and myself but it has not prevented him from becoming a wonderful yourng man with an enormous amount of things to continue to teach me and others.
I encourage all parents of autisitc children to find their child's skill or talent and encourage, promote, and aid them with whatever it may be. I truely believe that is one of the best therapies for them. The Lord will show us much through the eyes of our special children.

Probverbs 3:5 "Trust in the Lord eith all your heart and lean not on your own understanding..."

Thursday, August 6, 2009

Dear Matt

Dear Matt,
I am soooo proud of you. Over the last week you have again shown me what a wonderful, young man you are. I only hope to exhibit one ounce of your generosity, compassion, and hope.


Love,
Mom

God at Work

What a day!!! Received a call yesterday regarding Matt returning to school for a "transitions" classes. Spoke with our wonderful vocational rehab counselor and Matt met with our pastor regarding baptism.(upcoming blog on baptism)
Matt will be returning to school and receiving vocational services. Yay!!!!! However, this should have been done two years ago. I am saddened to report that somewhere the ball was dropped. I have been inquiring about services for him for sometime now and the school did not offer any services or ideas. I was introduced to the vocational rehab counselor after many inquires and much time spent on the internet and with a touch of God's hand. Over the summer I have been in touch with her often and have discovered that my school has not ever mentioned her services to me or any other parents of "special" children. It is very saddening and frustrating to hear this when as a concerned parent I have offered my time and always made it known to the school that if there was anything that I could do to help Matt and them that I was available. Only to find out that I was never contacted about services that the school had. I feel so guilty myself for not doing more..... Matt always received the services that were available on school campus but was not offered or refered to any services off campus. I had asked and was told that they were not provided(vocational rehab, transportation, etc)
In our small community I knew there were not many options so I became Matt's instructor on ADLs, basic skills and how to do tasks and certain jobs. God has blessed us in that what I did has helped Matt to develop and experience growth as an individual. Let me add that his SPED teachers were the best!!!!! and in no way to slight them at all. They too were not informed of the proper programs that were available. Over the last week, God has worked overtime in our lives. Through much prayer and the help of our voc rehab counselor, Matt will be receiving extra services that will help to transition him into society, and will aid him with job skills. My intent with this blog is not to point fingers or lay blame, but to hopefully alert parents, especially in small communities that there are services available and that with payer and diligent perserverance your child must be accomodated for. Every parent must review IEPs and ask questions, and do research on their own regarding services and the rights of the disabled. I use that term loosely, because each one of these unique children has a gift and special qualities that can be benefited by all and give something to the society in which they live.

Saturday, August 1, 2009

About three years ago I turned my life over to Christ in the middle of my living room, but never made a public announcement of it. A couple of weeks ago, I decided to publically for the first time acknowledging Him as my savior and accept Him through believers baptism. This has brought up questions that I never thought that I would have to deal with. Matt has been inquiring about the reason behind baptism. He says that he wants to be baptised with me. I don't know if Matt is able to understand and I am unsure how to go about explaining the process to him. I am a little selfish because I would like nothing better than for my son to be baptised with me but at the same time I know that is a decision that I can not make for him. Its difficult because I am not sure of what his comprehension is of what he hears in church. He is unable to express to me how he feels and what he believes. Is there any advise anyone can give me? I have spoken with my pastor but only briefly about the subject. This is something that is important to me and it appears to be to Matthew but it is hard because he can't make me or anyone else aware of what he is truely thinking. He communicates, but in his way and sometimes he can get confused about what he wants and what he hears someone else say, because he does like to repeat words (whether they are his thoughts or someone else's). We plan to meet with our pastor soon, but in the meantime I wonder how I will know what the correct answers are to help Matt understand his request for baptism.

Tuesday, July 28, 2009

I have been reading articles regarding "curing" autism and find some that are somewhat disturbing. When Matt was dx with autism I wished that he had not been stricken with this ailment and often wished that he was "normal". Over the years I have come to terms with our dx and appriciate all of his qualities and most of all his smile and wonderful outlook on things. I would never want to "cure" that. We treat other disorders and diseases but haven't found a cure for them. We treat diabetes, cancer, AIDS, and etc. and are yet to erradicate the world of them. EVERY autistic child has something great that he or she can teach the rest of us if we only take the time to learn from them instead of trying to "cure" them. God does not make mistakes, he makes us all the way we are suppose to be. Unfortunately some must be different or even suffer through struggles because of illness or disorders. My son is one of them... and I am very proud of him and the things that he has overcome and achieved w/o attempting to change him. Each day he teaches me how to have a different outlook on things and how to praise God for all that we are given in this life. So to Matthew.... THANK YOU, SON for all that you have given me. As for those that follow a strict regimen and have given up soo much for their children and are trying everything to correct the disabilties that their children have I do not in any way fault you. I may have done the same thing if the options that you have today were available to me many years ago. I cannot say so as a definite answer because that would only be speculation. As I have said before, Matt is the way he is for a reason and he touches many lives because of his different perspective of things. If I had attempted to change him or cure him then he would not be the same Matt that we all know and appreciate each day.

Saturday, July 25, 2009

Matt getting ready for the trip. Everyone needs a cowboy hat in Nashville.


Lunch at the Wildhorse.


Josh Turner just happened to stop by the night we went to the Wildhorse!!! WOW!!! Matt was beside himself w/excitement.

Sunday, July 19, 2009

Vacation Time

Every family looks forward to getting away together for a while each year, and mine is no different. We decided last year that we would take a trip to Nashville this year. It was really Rob's idea... he thought that Matt would enjoy it.
Matt has always loved music ,ESPECIALLY country music. Some of his favorite artists include, Reba McEntire, Taylor Swift, Carrie Underwood and Josh Turner. He is a huge fan of CMT. He can identify county songs after only hearing the first few notes of a song. He is so excited about going to Nashville. Rob's children are as well. Katy is a huge fan of Carrie Underwood as well. We have purchased tickets to the Opry to see Carrie but none of the kids know it yet. The will be sooo suprised.
Matt has been helping me pack today and he can't seem to pack enough. He thinks we "may" need everything. He wanted to pack the tv remote because as he put it "may need". I tried to explain that the hotel would have what we needed and that we only needed to pack our clothes. "Oh", he said and continued to pack objects that would and would not be needed. He is truly so much help to me. He brightens my day each and everyday.
We will be leaving early in the am, and I am sure it will be difficult to get Matt to go to sleep tonight with all the anticipation that I am sure he is feeling.
Matt and I will try to update some while we are gone. Hope everyone who may be going on vacation and those who have already gone and returned home had and will have a great time and a safe trip. Please say a prayer that my family will as well.

Thursday, July 16, 2009

Vacation... in two more days

Nashville Tn bound in two more days. Matt is so excited. He thinks everday is the day we are leaving for vacation. Everyone is going, Rob/me, Matt, Katy, Seth and yes Solomon. "Solomon Goes to Nashville". Hmmm....sounds like a good title for a movie, LOL.
Matt watches CMT all the time and knows every artist and all of their songs. So Rob thought it would be a good idea to take him to the city where it all began. We plan on touring The Ryman, The Grand Ole Opry(have tix to see Carrie Underwood) but Matt and Katy do not know it yet(hee hee), The General Jackson and Music Row. Whew... already tired, but it will be a blast for Matt and the rest of us watching him. Pray for us a safe trip. I will try to update on twitter while we are gone.

Thursday, July 9, 2009

We are coming up on another meeting of the autistic support group meeting for my area and over the past several weeks since the last meeting I have been reading articles and searching the internet for subject matter pertaining to gluten free diets and vaccinations related to autism. Along with reading those articles I have been reading my bible and pondering alot regarding myself and Matt and autism.
When Matt was born, even before he was born I had expectations of what he would be like. What his personality would be, what type of sports he would play, where he would go to college, who he would marry, and all the other things that parents think about before the birth of a child. After Matt came into this world he appeared "normal", met all of the milestones he was suppose to around the correct age, until it came time for signs of language to be present. He cooed and laughed and made all those adorable baby noises, but true language was absent. He had experienced numerous ear infections during his infancy and had some scarring to his ears because of that. I was certain that this was the cause of the language delay. He had tubes placed in his ears around age 2 and I was certain with a little time he would be talking. Speech did come but not as it should. I was in denial looking back, thinking even by the age of four that he would catch up. Finally I came to terms and said, "something isn't right". After many visits to physicians and specialists we were given the diagnosis of "mental retardation". My world was shattered. I moped for months, even years. Finally we received a diagnosis of autism spectrum disorder by age 8. Eleven years ago I had never heard of the disorder, let alone the vaccine issue or diet issue. Other than medication and attempts to receive proper services at school that was about all that we could do. Over the last several years the debate over diet and vaccinations have raised many questions and sparked many controversies.
I have pondered the subject and wondered if I would have done or not done some of the things that are out there now to "prevent, improve, or cure" autism. I have come to the conclusion that God does not make mistakes. He is the Creator of all and designs each of us the way that He wants. Matthew's name means "Gift from God" and he truly is. All children with autism are gifts from God. Matt has taught others around him and myself that he content with himself and that he can accomplish much with time and effort. Vaccines and diets may or may not have changed anything with his disabilities... but either way if Matt had been born any other way then he would not be the son that has taught me so much over the years and he would not be the Matt I know and love.

Sunday, July 5, 2009

Finally able to get Huntsville pics posted. Kids and Matt had a good time but I don't think that they could appreciate the greatness of the shuttle, Saturn IV, and the excitement of the technology that Rob and I could. We decided that space travel is something that the all have grown up with, it is something that they have always known. For us older people(LOL) we can remember a time when it was unheard of or just a fledgling program. This year in July celebrates the 40th anniversary of the Apollo Moon Landing. Amazing!!!!!

Our trip to the space center.


June 22 trip to Huntsville Space Center!!!!

"Luke, I am you father". Rob, Matt, Seth, and Katy.

Look how small Rob looks next to the the shuttles.

Matt wanted to wear a space suit.



the space shuttle




Rob, Seth, and Matt checking out the planes.

Friday, June 19, 2009

Feeling a little discouraged this am . When I started this page for Matt and myself I was very confident that I would come in contact with other families with autistic children. However, my blog page hasn't picked up followers or received many comments. I thought that our stories might inspire others and in return give Matt and myself an insight to others experiencing the same challenges we have and have had dealing with autism. I am troubled as to whether I am not putting the blog out there to others in the proper manner or if, to put it simply, that no one is interested in Matt's accomplishments and struggles. In our state I have yet to find anyone through this page that has children with autism.
Are any of you out there??? I look at others who have pages with updates on their children and posts regarding autism and wonder what am I doing wrong. If anyone could please help me with suggestions for the page or with any advise as to other blogs that I may join I would most appreciate it.

Monday, June 15, 2009

Matt wanted to post his favorite recipe. (He can make it himself)

Bacon Ranch Dip

1(16 oz.) cup of sour cream
1 package of Hidden Valley Ranch dressing mix(dry)
2 cups shredded sharp cheddar cheese
1 package of real bacon bits

Prepare the sour cream and ranch dressing mix,
add the remaining ingredients and mix together.
Serve with Frito corn chips or on bagels.