Knowledge

 

Knowledge

When my child was diagnosed with autism; I went thru so much anxiety and trying to look for resources on the web to see what I can do to help her. Called several places and was put on several waiting list for ABA therapy and for speech therapy and occupational therapy; in one of those evaluations my daughter needed physical therapy for a short period of time because of her balance. I can honestly say these waiting list were so long that I literally called every single day to see if there were any cancellations and had a paper list of all of them that she was put on their list. 

There was a point in my life that my daughter's diagnosis affected me terribly; I went to being a happy person to being mad at the world because I saw that my child was struggling and I could not do anything to make it go away or make her progress faster. I was a medium to overweight person in that time, but I turned to overeating because of the anxiety I went thru. 

I passed thru a lot of emotions and things in my life; I had my child 9 months in my stomach and I was her mother and I was doing this all alone. I thank my parents for helping me as in me living with them; but I was the one making the phone calls to several places, searching the web to find different types of things to help my child, going against the clock because I was told by the developmental pediatrician in Philadelphia that when your child is diagnosed with autism; you have a short window because their brain is like a sponge and once the years pass it is not anymore and the therapies will help but it will just be more difficult or longer. 

Knowing of her diagnosis made me thru the years a stronger person and an advocate for my child, because no one else was going to fight for her in the school system or in her IEP meetings or in general in her everyday life. I do not say I am the perfect mom but I always try to do the best for her and make her future better. I do always try to keep communication with her teachers thru email or phone and they know I am always available if there is a problem with my daughter in school that needs a plan change. The school does know that she is gluten free and I always offer to bring gluten free snacks or cupcakes to the classroom if in case there are any parties in school.

My point is that us as parents with children with autism or any type of diagnosis go thru a tremendous amount of anxiety and the need to help their child. 

There are people in this world that do not know what we go thru and why we might see a therapist or see a psychiatrist and judge us as being crazy or mentally ill. They should be under our skin and know our past and see what we as parents go thru and then judge.  

I became this shy girl in high school in my young age who did not want to speak that much because I stuttered a lot in school; to being a mom who had no choice than to talk even if I stuttered because I had a child who needed a voice and help; which had to be me because I am her parent. 

"Stepping Stones for my Daughter with Autism": What the future will hold....

What the future will hold

The happiness you feel when you hear "great news"; just like if I won the lottery or the biggest prize in the world because that is what us parents feel when we hear advancements or improvements with our child life.

I am a parent of a child with Autism 

I have a daughter who has autism; it's difficult because for years I blamed myself for her diagnosis and thought I did something wrong. Going to therapy I have learned that it's not my fault and have to let go of that blame that I have. 

I have done the impossible to go in Autism mom chat groups and talk to her teachers and now she is finally starting her 2nd session of private speech therapy weekly. I'm gluten - free with her and refuse to medicate my child. I take her to the chiropractic weekly and always keep communication via phone and email with her school and attend all her meetings. What my daughter was before she has changed a lot and is not as worse as before when she first had her diagnosis of autism (ASD).

With her gluten Free I make sure there is no contamination with the foods we eat and I read all labels and several websites on what contains gluten. I give her Omega capsules and vitamin D plus multivitamins that are gluten Free and buy them from her biomedical doctor. I'm trying as a parent to be the best I can be for my child and of course take care of my other child who is okay and talks too much . 

All I wish is for her words to come out more and for her to express herself more. I know there is no cure but I just baby steps then we will see how it goes. 

My worry is that she won't be able to express herself and half a life on her own later on. I want to improve and I'm doing the best I can . These vitamins and thins are costly but money will never be a issue for my child . I also give her probiotic that are expensive but the best. 

She is going to be 12 years old soon and I just know she can and I believe she can more with this private speech therapy plus school and plus summer school they have for autism kids here. 

Any moms that have ideas or stuff that they want to share are welcomed to let me know and I am a person that is not a doctor but can share my experience with my child. I did cut dairy from her and no sweets or sugar stuff . 

I will share more in the days . 

Experiences and difficult stones to pass

I have passed all these years since the diagnosis of my child; thru ups and downs. It is something that as a parent that it affects you and you turn into anything that is going to help you child advance and progress in her life. I have started at first with therapy and then turned to her seeing a Neurologist in Long Island, New York to changing her to a Neurologist in Philadelphia, PA. (keep in mind I live in the Lehigh Valley in Pennsylvania so it's a long car ride for my child)

I have started with them doing head MRI's to making sure she doesn't fall into the category of having seizures; which they had to sedate her for that exam. Then in the end I turned to a Genetics doctor in The Children's Hospital of Philadelphia; making sure that there wasn't an abnormality with her. I did turn to medicine, but then gave up because it was making her worse than better. I found a biomedical doctor in Philadelphia which from there I started more than 3 years ago a Gluten-Free diet with her.

I researched what foods,medicine,things she may touch that may have gluten. You would be amaze of the stuff that contain gluten, I honestly prefer shopping for her in Wegman's because it shows me if things contain gluten or not.  Some examples are: some playdough's, soy sauce, some powder garlic, some brand name hot dogs...etc.. 

I have turned into giving my child vitamins and mb12 injections and I can honestly say these things are not cheap; they do cost money but it is well worth it for your own child who needs them. I do love especially the probiotic which is the VSL #3 which you have to keep it in the refrigerator and give once a day. 

I did find out that my daughter these months has another diagnosis to add which is OCD plus her autism. That was something that I didn't expect and it was making her life bad as in the writing and her impulses. I did turn to medication for this condition, but honestly I am trying to find a way to make her life biomedical and get rid of the chemicals and bad things in her body. 

I did talk to this person who reference me on this diet of a woman called Keri Rivera and I honestly am going to see how it goes. I am going to eliminate her sugars and have heard that there is coconut sugar which is good for you. She is 70% off dairy now, but I am trying to make it 100%. 

I try to go in the internet, talk to people in the Autism Team app in my iPhone and they also share information with me just like I share information with them. Sometime doctors turn to medicine and think it is the solution to a child's problem, but sometime it is not like that. Us as adults might take medications for conditions that we have, but we are adults. I could take medications for my fibromyalgia and my migraines, but I wouldn't want my child who has autism and OCD turn into medications if biomedical treatment would help her and eating gluten-free. 

Honestly, I can't say I have been the best of a mother because nobody is perfect, but I can say that I find a way to make my daughter get better and make her autism more lower. 

I blamed myself for my daughter having autism and I blamed myself because I thought I did something that caused this, but I am learning now that it is something that happens and you can't do anything just do the best you can and move forward. My daughter has been in her worse of days when she was first diagnosed and now even though it is not the best; it is much better.

I still remember when my daughter went to see her developmental doctor and she had a bad tantrum and went to the ground in the office waiting room and couldn't stop yelling and was in her own world. I was crying because I honestly felt I didn't know what to do for her, I felt useless as a parent and doing the job alone and her father not around to help me. I remember that there was this lady that told me: Don't worry I passed through this with my child, things look bad now but it will get better... give it time. I still remember her words and now I know it might not be perfect but I do see improvements in my child. 

I do the best I can and only expect that one day my daughter can grow up and have a normal way of living and go off to college and be the best she can be. I know there is no cure for autism, but I do know that there has to be a way to make her life better. 

My daughter's way of life and my own too

My daughter Angelina has turned 11 years old today. What passed thru my mind was everything that we passed since the day she was diagnosed with autism. I thought to myself "Why me? and Why this happened if I did nothing wrong in this world to have this brought on my child? Now I learned throughout the years that this is not a cure or a disease; things happen for a reason and these are challenges that we have to go thru life to make us strong mothers.
Angelina from being in anti-depressant medicines when she was little; not she is for 3 years now off them and is completely Gluten-Free. I stick to this and think it has made improvements in my daughters way of life. I am not going to say that everything is 100 percent better, but I am happy for her to talk more and to write words and to draw things that she sees in her iPad.
I have entered Google so many times to make sure what things don't contain wheat; you will be amazed how many things contain wheat or factories of companies have them around the foods we buy. I trust Wegman's and for me that is the only store that I can honestly say I know if its Gluten-free then it is.
Nothing prepared us as parents to have a child with autism just as life didn't prepare me for this. You just have to learn how to be strong and get the resources for your child before years pass and things get more complicated in their growth. The emotional part will never pass; if you would to tell me now something about my daughter autism; I will probably have tears in my eyes.

I had so much support from my parents and thank them every day for their support in dealing with my daughter all these years.

I am reaching out to parents with ASD children (autism); to see what other biomedical things they do or foods to stay away from. This is an ongoing thing and for me as a parent if I have to turn to my phone and see web conferences (which I have seen TED conferences on autism) I would do everything to see how I can understand my child better.

People think because a child speaks that they don't have nothing and that autism would never happen; all I can say is evaluate when they are little. Now you can since they are 6 months old and autism is nothing wrong or bad or a disease. It just means they are special in their own way.

 

Updates, probiotics and info on gluten on lipsticks...

 

It has been a long time since I haven't posted any blogs on my daughter's progress. Angelina continues on "Gluten-Free" diet and with her Methyl B12 injections given every 2 days in her buttocks. Last week, we went with my daughter to her biomedical doctor Dr. Patrick Elliott in Philadelphia. I was so glad to hear from him that he has seen so much progress from my daughter and he asked me several questions (kind of a test but knowledge check in his part), it came out that my daughter's autism has reduced significantly. I know there is no cure for autism, which I am aware of and this is not a disease in no way or shape.

 

What the doctor did "ADD" for her to take was VSL #3 Probiotic vitamins (that have to be refrigerated all the time), which are natural and gluten-free. Of course she continues with her Methyl B12 injections every 2 days, before it was every 3 days but now he wanted to increase the intake.

 

 

My daughter is not celiac in any way, but has extreme gluten sensitivity when she consumes gluten in any way. We all learned it here the good and bad way and even her school is aware of it. What I love about the schools are that if you do make them aware of their allergy to gluten, they can provide gluten-free lunch (you do have to provide a doctor's note when you do this).

 

There are a lot of gluten-free products everywhere now which make life easier for me and everyone who is allergic or celiac. When we go outside I am not that worried if it will be uncomfortable to hide things from her. I do wish a lot of other places do include gluten-free food, I guess it is still a work in progress throughout the years.

 

I am not going to lie, until now I still read labels and have my bookmarks from websites to help me. What I did actually discover from my neighbor is that there are a lot of lipstick products that contain "Gluten" and that was shocking because it adds more to my list now.

 

http://celiacdisease.about.com/od/GlutenFreePersonalCareProducts/fl/Gluten-Free-Makeup-Brands.htm

 

I have included above a website on information on gluten-free lipsticks.

 

I also am including below a website that talks about Probiotics as well.

 

http://www.autism-help.org/intervention-biomedical-probiotic.htm

 

This week I will be blogging more. I know that everything that I am doing with my daughter, there is no evidence that it helps her autism but so far it has helped me as a parent and that I am happy and glad so I just go for it and continue. 

"The Happiest Day of a Mom..."

 

 

 

What it Means to be a Mom with a "Special Needs" daughter...

 

 

     Since my daughter was diagnosed with autism several years ago, I went through several stages "denial, sadness and then action mode". My daughter Angelina has autism and I know it and accept it, but then again I felt that I had to try several things to help my daughter. As you can read my previous posts I tried several things, but in the end I tried "alternative medicine". I believe in my heart that it was the best decision I ever made with Angelina. It is not something that "medical insurance" covers, so I actually have to spend out of pocket but it was so worth it for me because my daughter has progressed so much. I am not saying that she is 100% perfectly fine, because there is never a 100% in life. If you see my daughter now and compare how it was before, I can honestly say that to me it is a major difference.

 

      Angelina is being treated with "Alternative Medicine", in which she is completely "Gluten-Free", also accompanying her "Applied Behavior Analysis Therapy" (ABA Therapy), in addition to private speech therapy outside and speech therapy and occupational therapy in school too. A lot of people and things play a factor for my daughter progressing, but ever since she has been "Gluten-Free" her behavior has changed and so many things have changed with her. With her "Alternative Medicine Doctor" as many call "DAN Doctor", I am also giving her vitamins too.

 

      Saying all this is what I am going through with my daughter and I know it is a step by step process. But, today when I got home I went to my bedroom and my daughter Angelina left in my pillow an envelope she made that said "Angelina" with a heart in the middle and "Mommy", if you see the picture she drew a yellow ribbon in the middle and looks like a present. When I opened it, she had another paper folded inside with a picture of SpongeBob and all the cartoon characters.

 

      Seeing this made me laugh with a big smile in my face and so proud as a mother. So proud because I can see that my daughter is progressing so much and that is something that makes my day and world to see. Now Angelina even asks me to read to her bedtime stories, which in the end she read and I help her with some words she doesn't understand. "She Can Read"!!! That makes me so happy because even though it is a day by day process with Angelina, I can say I feel so proud to see her make all these positive things. It just makes me so proud and so happy, it completes my world. I love all my three children the same, but I express my happiness with Angelina because she is a child with "Autism", and just watching her progress makes me so happy. It is the same happiness if I see any of my two boys Jean-Pierre and Philippe, do in their every day progresses in school or life. 









What is Autism ?

      Many people have different definitions of what autism is and who they are. People think that if their child or teenager is speaking and has done every milestone on time, that they are the ones that don't have autism. That theory or thought is completely wrong, it doesn't work like that. I know several people who talk and are very verbal and have autism or any type of disorder.

       There are different kinds of autism and I browsed thru Web MD website and found this:

• Autistic disorder. This is what most people think of when they hear the word "autism." It refers to problems with social interactions, communication, and imaginative play in children younger than 3 years.

• Asperger's syndrome. These children don't have a problem with language -- in fact, they tend to score in the average or above-average range on intelligence tests. But they have the same social problems and limited scope of interests as children with autistic disorder.

• Pervasive developmental disorder or PDD -- also known as atypical autism. This is a kind of catch-all category for children who have some autistic behaviors but who don't fit into other categories.

• Rett syndrome. Known to occur mainly in girls, children with Rett syndrome start developing normally but begin to lose their communication and social skills. Beginning at the age of 1 to 4 years, repetitive hand movements replace purposeful use of the hands.

• Childhood disintegrative disorder. These children develop normally for at least two years and then lose some or most of their communication and social skills. This is an extremely rare disorder and its existence as a separate condition is a matter of debate among many mental health professionals.

     According to "Autism Speaks" website this is what I found that I would love to share with everyone on the statistics in people with autism in present time:

• Autism now affects 1 in 88 children and 1 in 54 boys
• Autism prevalence figures are growing
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs a family $60,000 a year on average
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism

    Autism is something that is affecting a lot of families everywhere. There is no scientific reason why it is happening, but there are several theories to why.