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. 

The Definition of Ignorance vs. Wise Knowledge of Others

 

 

 

Ignorance vs. Knowledge

 

      I haven't blogged in a while, but everyone that has seen me on my Facebook page knows that I love to post stuff on what goes on with my kids. Anyways, the children have returned to school and that is a positive thing especially for my daughter Angelina. Being in an autistic support class it is very important for my daughter to be distracted with educational stuff and not at home playing on her iPad or watching movies. Things are actually better for my daughter than before and I get super emotional every time Angelina says something new or does something different.

 

      Once school begins "its the time" where our children get sick with stomach flu or any type of virus, which means "it is time to visit their pediatrician or take a trip to the ER". Over the weekend I decided to take my daughter Angelina to St. Luke's Hospital Anderson Campus close to where we live at 4am. First, it was a Saturday and her doctor wasn't open that day plus she couldn't stop coughing all night and I just couldn't sleep hearing her cough so loud. I might sound paranoid but my daughter had pneumonia in the past plus asthma so I take any type of illness serious. I can honestly say it was the most uncomfortable time I passed with my daughter because I don't know in what way I have to spell or say "my daughter has autism, she is not crazy". Inside the room I had a horrible nurse that just wasn't feeling it which is not my problem because if she decided to be an ER nurse, she is definitely not going to be seeing healthy patients. Plus, in the beginning when I just got there and registered my daughter the receptionist had to put a bracelet in her wrist and I should of seen this whole negative vibe going on that day. I told her if it was necessary to put it on my daughter because I know Angelina doesn't like to wear stuff in her wrist and I know from previous hospital stays I can wear it in my arm because I am the parent, but this women said that it was necessary and said to me in a ignorant way "I have my cousin who has autism and I know how they are". I don't mind if someone feels like commenting that to me, but the way she said it was so not cool for me.

 

      I'm a parent of a child who has autism and am not embarrassed to say it to nobody, but hate sounding like a voicemail machine when people are so ignorant when my daughter acts a certain way or does something. I feel like screaming at these type of people, but don't want my daughter to hear this. Angelina may have autism but she is a very bright and smart girl, she understands any type of conversation that goes on in the house either in Spanish or in English. At first I thought that if I spoke in Spanish she wouldn't understand some stuff, but I was shocked to see how well she understands both so well. I feel so proud of all the accomplishments that she has done over the past years and how well she has progressed over time. I know this will be a very long bumpy journey that both Angelina and I will have together, but I will always have a smile and my head high.

 

      As a mom of a special needs child, I want to be able to help others who are going thru the same situation I am going through. That's one of the reasons why I'm posting my daughter's biomedical journey and her gluten-free and dairy-free diet is going step-by-step. I can honestly say that my daughter enjoys eating her Gluten and Dairy Free foods and loves it. There is nothing that my daughter may miss from what she was eating before to what she is eating now. All I did was modify everything to a Gluten-Free and Dairy-Free version with a good taste in the middle. It was difficult at first for me to go shopping and read labels, but I think I got it right now. I even have my iPhone App where I put in my zip code and it shows me places where they have Gluten and Dairy-Free foods or desserts. I love technology and the wonders of my iPhone apps.

 

Enjoy your week everyone!!!