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. 

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. 

 

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.