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. 

Additonal biomedical vitamins 

She has taken these before, but I had to order them because she ran our of these vitamins. 

They cost money but are worth it. I go all the way natural with my daughter and refuse to give

her medications. With her ABA Therapy services at home, private speech therapy weekly that we take her with my husband and her Summer ESY program that she loves and they told me that her speech improved more and I told them because she has private speech therapy now. 

I felt so happy to hear my child improves; I don't expect a cure ... I just want to hear that he is better and that makes me feel proud that I am doing a great job in all these years and my husband is helping and learning how to deal with my daughter as in her gluten-free diet and no dairy and plus accompanies me to all her speech therapies and is involved in her health care which makes me happy to know that I have someone who is not her father, but that wants to know how to learn about Autism and everything. 

Chiropractic care also helps too; which I take her weekly because it makes her feel good. 

What the future will hold....

What the future will hold

You know the happiness you feel when you hear "great news"; just like if I won the lottery or something like that. Today my daughter's ESY program called me (I am not going to lie I panicked because I thought she was acting out or had a meltdown in school). The teacher noticed my voice and he knows me for months; all the teachers and assistant aides know me which I love because I want to hear their feedback on how things are or what happened with my daughter. Well, long story short... he told me what I have done with my daughter that she is using more words now and she can express herself more than a month and a half ago.

I told him that she is going to private speech therapy and she is of course going to start with a new company ABA services because I just felt the other company wasn't doing their job. The behavioral specialist for the summer who is working with my daughter and other kids told me, she can go to the district school and be in an autistic school classroom and not where she was before.

You can't imagine how happy and content that made me feel. I have read the internet, doing gluten-free, low sugar, 5% on Gluten Free cookies per week. I have read everything and am not doing medications at all on her; only strict vitamins and her vitamin D that she is low on.

Her pediatrician tested her to see if she has gluten in her system and he said that; I am doing a good job because there is no gluten at all in her body by her blood work.

If it works for my daughter I would do the impossible so I can make her future a better one; my goal is for her to communicate more with people and be able to be understood. I don't expect miracles I just expect little steps and then we will see what the future holds.

I am not the mother of the year, but I try my best to make her better in any way. She has so much love and is affectionate to me and her siblings. She does have her mood swings, but that I was told my her teacher that it's a puberty thing and a girl mood swing; not the autism.

I go every week to her speech therapy and feel joy inside when I hear from afar that she says more words and tries to make her self understood. That is what I know that I am doing the best I can.

One of the most important things with autism is ABA Therapy !

 

 

      Angelina has been with ABA Therapy for almost 5 years and I am so happy for all the improvements that she has made. When she was diagnosed with autism, every doctor I have seen told me that ABA therapy is an important factor with an autistic child. When she started I honestly thought that maybe it wasn't that important, but as time passed by I saw her improvements. An ABA therapist knows how to control their behaviors and redirect them in ways that transition them to other steps in their development.

 

      My daughter is may be in biomedical treatments, but the first thing that her biomed doctor told us is to please "Continue with ABA therapy and be aggressive with it". He wanted Angelina to continue with her behavioral therapy and that it is an important factor for her development. My daughter has been with biomedical treatment for months now and it has come to a turning point that she is realizing things more. By her realizing things more, she knows how to dominate people and has develop an attitude in the process. Her biomed doctor laughed when I told him this, but he said that his laugh is a great sign of progress from my daughter.

 

      My daughters ABA therapy company reduced my daughter's hours which made me very concern. I now learned that the best way of getting your point across and of communication is to "be straight to the point". The reason why I say that is because nobody will read your mind, you have to be your child's voice and advocate for them.

 

Here is a link on the definition of ABA Therapy and the benefits to children with autism: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

 

      





Our first visit to see the doctor and so very nervous I was ...

     The first visit I took my daughter was the most nerve wrecking day for me, I had a migraine and had so much tension all over my body. It was a 1 hour plus drive for me with Angelina to see the doctor, which was passing Philadelphia. Angelina was not great and had several bad episodes when we went to see the doctor. He was asking me so many questions from the beginning of my pregnancy all the way to the present on how Angelina was. At the same time, I had Angelina scream and cry which made me have a bigger migraine. The doctor told me that it was okay for him to see how she is so he can better evaluate Angelina. 

     The doctor was happy that I already started on giving Angelina no gluten (GF) foods, but told me that I had to start her on casein free food too. In order for Angelina to improve in this type of treatment, she had to eat and drink no gluten and no casein. He put her on supplements that had no dairy and no gluten, he gave me a big red book that had everything on bio medical treatments and information on  Methylcobalamin B12 injections that I would have to inject Angelina every 3rd day (which he called Hopewell pharmacy and had them ship it to me). 

     I left that day with a lot to read and left with a bigger migraine that I came in with. I was happy in a way because the doctor told me his story on how he is a parent as well with twins with autism, how his twins improved throughout the years. He gave me a print out of a newspaper article of his life and how he thanks his wife for following every single treatment with their twins. Angelina's doctor told me that everyone in my household have to adjust to this change in food because one little mistake can alter her treatments. He mentioned how important it was to have support from everyone and especially my husband in this. 

     I had to also little by little remove Angelina's medicine from the neurologist because I was starting on bio medical medicine, which is removing all toxins from Angelina in general. He send Angelina for blood work, in which I decided to take her to St. Luke's Hospital Anderson Campus to get her blood work done there. There was so many blood test that he ordered that the lady from St. Luke's Hospital was shocked to see what her doctor ordered. OMG! The lady asked me which type of doctor is this, I told the lady that this is alternative medicine. I honestly did not care what people think of what I am doing for Angelina, I know that I have her best interest in all this and would never do nothing that would put in risk her health. 

     

     I started Angelina with her treatment two days after, I wanted to be sure to read everything that the doctor gave me. That day Angelina was completely on no gluten and no casein foods, plus she was taking her supplements that the doctor gave her. The doctor gave Angelina a schedule per week what supplements I had to start her on week per week, plus give Angelina the methyl b12 injections every third day (small injection). My older son JP helped me and was very thankful to him. I read in the website of Dr. Neubrander of this cream that I think I would try so I can inject Angelina at night so she would not see it. 

      I started giving Angelina almond milk with no gluten oatmeal for breakfast and a hard boil egg. For dinner, lunch and snacks Angelina would eat her GF pasta with spinach sauce that I make, plus gluten free pizza with GF cupcakes if she wants (apples, pretzel, veggie chips, gluten free peanut butter cookies any day). Angelina doesn't really like drinking almond milk, but I sit down with her until she drinks everything or else I would take away her iPad (which she loves). 

       I was happy the day I discovered tofu ice cream sandwiches for Angelina! WOW! I thought she would not eat them because just reading "Tofu", you would think she would hate them but she loves them. Plus, I discovered gluten free cream cheese that I prepare with her pasta with spinach sauce. Thanks to Rhea that she told me all these new discoveries. 

Enjoying this !!! 

Learning the Basics and a New Start

      I took my daughter to "KidsPeace" for their own evaluation in which their psychiatrist asked me a lot of questions from the beginning of my pregnancy all the way to the present. OMG! It feels like you have to repeat your life to someone over and over again, but it didn't matter to me as long as I get help for my daughter. After almost two hour long session with them I had to wait 30 days until Angelina's services were approved and from there she would start with a behavioral therapist in our home. I was so anxious and nervous that I wanted it to go by quick. I had my cellular phone next to me all the time waiting for an update. Believe me those days pass so fast that you will not even feel it go by.

     At the same time, I had an appointment with "GoodShepherd" with a developmental pediatrician. Starting off with "Center City Pediatrics" as my guide on how I can go about services for my daughter was great, but waiting for that appointment in "GoodShepherd" was worth waiting for. Angelina saw Dr. Iyengar and she is an awesome developmental pediatrician ! Dr. Iyengar went over with me a long check-list with things that I had to do and what other type of therapists I had to schedule appointments with. The doctor recommended my daughter to see a speech therapist and an occupational therapist, but there was another waiting list to see a therapist in Good Shepherd. In the meantime I found availability in Lehigh Valley Muhlenberg Hospital until I got that call from "GoodShepherd".

     Dr. Iyengar wrote a script for a complete blood test of almost everything on my daughter, it was a general genetics blood test to rule out other stuff. These type of blood tests take a long time to get the results back, it was more than 5 weeks for the test results. I had to make an appointment with a genetics doctor in "Children's Hospital in Philadelphia" and get additional feedback from them as well. Angelina and I had appointments every week with someone or somewhere, I was driving long distances all the time. I learned a lot from the genetics doctor and it was a relief too because there wasn't additional things we had to worry about.

     My daughter's developmental pediatrician scheduled a 2-3 hour exam in "GoodShepherd", it's called an ADOS Exam which is short for "The Autism Diagnostic Observation Schedule". For a definition of what it means you can click here . I had to sit next to my daughter and could not say a word the whole time during the exam, as much as I wanted to give her the answer I couldn't. When the exam was done, I had to take my daughter outside with my grandmother and had to go in without her so she can go over the results in detail. My daughter was diagnosed with autism in which she was classified in the higher level. She can retake the exam again, but it was advised for us to wait a while and see if she has progressed. Us as parents have to understand that this exam is not a pass or fail test, it just helps us know it what level of autism our child is so when she does get the services of behavioral therapy, speech therapy and occupational therapy they can know what to work with her on more or less. From the range of 0 being nothing and 25 being the highest, Angelina was scored 16. 

     After several days pass by she was approved for services with "KidsPeace" and had therapy at home 5 days a week almost half the day. The other half of the day she had speech therapy and occupational therapy some where else, my daughter was a busy person for several months and years. Then came the time when Angelina reached grade school age and then I had an interview or I would say "another evaluation" for her to receive special services during school hours as well. Once she entered kindergarten, I had to discontinue speech therapy and O.T. therapy in "GoodShepherd" because there was not enough time or hours in the day for her to fit all this. Wow!! Angelina instead received Speech and O.T. in the school and still continued with her behavioral therapy at home.

     There is so much to learn that I am still learning until this present day, we learn something new as the days go by. It makes us stronger parents and know that no matter what we have to absorb, we have to continue and never give up. Autism is not a disease and there is no magical cure for it. Believe me when I say that after a long fight we do see results over time and know that we are doing something right for our kids. There were days my daughter would throw herself in the floor, cry so much or even hit others for no reason, but we just have to have patience. I remember until now that one day I was leaving "GoodShepherd" with my daughter and all of a sudden she was in the floor and cried for no reason, I didn't know what to do and was lost in words. I remember there was this lady that was leaving with her son who was a patient there as well and she told me "believe me things will get better with your daughter" and she told me briefly that she went through the same thing with her son when he was my daughter's age. I still remember this because now I really understand that things do get better over time....