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. 

Ups and downs

It has been a while since I have not published anything in my Blog, but a lot of things have happened these past years. I have my daughter who has autism and more than a year ago she was diagnosed with OCD too. My daughter still remains Gluten Free for several years and everything is separated in the house to make sure there is no cross contaminated with our food and hers. She drinks Lactaid milk and not regular milk, but the only thing I still remain is on her Gluten Free life. 

I have always been a believer that I did not want to child to be on medication for no reason before more than a year ago because when she was first diagnosed with autism they told me she had also ADHD; which in the end was a misdiagnose in that point of her age and the medication that she was on made her worse than better. There are times in life you have to see what is important for your child health and when she was diagnosed with OCD; I knew that going biomedical in that portion of her life was not going to resolve her condition. The Gluten Free made her autism better as in changes and results I saw when she was GF, but with OCD it is a different condition that I decided after talking to the psychiatrist in her school and my husband and I decided it was best for her to be on medication. 

I thank my husband who is her step-father, but a big part of my kids life because for my little ones he is the only father figure that they have seen for years; I thank him because in that stage of my life I had his support; both emotional and as a mom too. I was honestly scared because I did not know what was going to happen after she was put on medication for her OCD diagnosis. 

It did work out as she lowered her OCD; I am not going to lie to you guys as in there are times she has her moments but they are less not than they were before years ago. Just today I had a situation with my daughter as in she had an episode with her OCD and it was very difficult because we always want the best for our children and want them to be better in life. Nothing is perfect in life and we just have to be strong and never give up on them. 

Just like when she was diagnosed with autism; several physicians told me she was not going to get better and that they were sorry for that, but I never gave up on my daughter and now I see the best in her. I searched the internet, found different alternatives for the autism; which I am not a doctor but I am an advocate for my child and I am not going to never just stand there and give up on her or none of my kids if they ever have anything. 

Now we are in the waiting list for her to go back to private speech therapy and hopefully she can get in before October so she has speech therapy in her school which she does already and in a private facility as well. I am not a perfect parent, but I try very much to be the best I can be and as long as they are doing great; then I know I did my job as a parent. 

I even found out a gluten free cosmetic website that sells lipsticks and foundations and also a shampoo that is Gluten Free that I currently bought for myself and my daughter now uses the shampoo, but the cosmetics not yet because she still is a teenager but when she does in years to come at least I know what things she can use. 

Removing things and starting from scratch

Decided to remove medications from my daughter and turning completely to biomedical and vitamins for my child & remain still her gluten-free diet. 

I did decide to remove too much sugar: low sugar apple juice and junk food which are gluten-free that may contain too much sugar that might alter her moods. 

These weeks are not going to be easy but it something that I decided to do for my child. 

Prohibit foods: 

- Gluten foods

- High levels of sugar in any type of juice

- Too much things that contain carbs

- Highly salted popcorn and once a month Cheetos; the original one that is gluten free

Currently giving my child: Omega, Pure minerals, vitamin D, Magnesium Calcium, Gaba, Vitamins that contain no chemicals , folinic acid and temporarily her MB12 injection every other day. 

It is something that I am going to try and see how it goes and if it does not work; I will reconsider the vitamin part, but still will keep the gluten free part because I know that makes my daughter better. 

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. 

Starting first with no gluten before seeing her DAN! doctor

     Three weeks before Angelina saw the DAN! doctor, I decided to start her on Gluten Free foods. I went to Wegman's website and looked up all the gluten free foods for Angelina. My mom and I threw away all the foods that contained gluten and left the ones that were okay for her to eat. Everyone in the house knew that if they would eat something that contained gluten, that they should eat it outside before entering the house with it. Reading my friends blogs and Facebook post, gave me ideas on what I should buy. I really thought it was going to be difficult buying gluten free (GF) food, but I was wrong. I spend a lot of time going to Wegman's and learning to read all the labels of what to buy and not to buy for the house. 

     

     The only reason why I started Angelina with no gluten (GF) food first, was because I wanted her to transition little by little and not just take everything away all at once. Instead of giving Angelina regular milk, I bought Lactaid milk (I know Lactaid milk has an enzyme that contains lactose). Lactaid milk was just a temporary milk that she would drink before I started her on Almond milk or Coconut milk. I kept all the internet websites on my iPhone on what ingredients contain gluten and what not to buy. WOW! my iPhone was full of these saved internet sites that I would read if in case I saw something I was not sure of. 

     These were some of the no gluten foods that I bought for my daughter Angelina:

• Ancient Harvest Quinoa Pasta (different shapes and sizes)
• Ice cream cones that have no gluten
• Wegmans organic vanilla ice cream (this I knew I had to find a substitute that has no dairy)
• Betty Crocker Gluten free (no gluten) cake mix *chocolate*
• Brown cow vanilla yogurt (which was temporary until I find no dairy yogurt)
• Amy's Pizza rice crust with no gluten and no dairy (frozen)
• Annie's Homegrown cookie bunny 
• Eco-Planet Organics Hot Cereal instant, apple and cinnamon no gluten (GF)
• Wegmans fresh spinach (which of course has no gluten and she loves in her pasta)
• Glutino Pretzel twist, no gluten (any type of pretzel that has no gluten)
• Brown sugar 
• Dietz and Watson hot dogs no gluten (any type of hot dog that says no gluten GF)
• Rice 
• Eggs

     My food list goes on within the days that I learned new things from different people and of course Google....