September 12, 2011

Mom Shop: Aid for Abby

About Aid for Abby:

We are here to sell a product in order to save up money to move forward in life. Abby suffers from Autism, Expressive/Receptive Language Disorder and Obsessive Compulsive Disorder. I made the ultimate sacrifice, I gave up all material possessions so that my child could continue receiving medical treatment and therapies. I was just informed as well that she has a mild case of scoliosis. Abby’s care for her autism, speech and OCD are not covered under her insurance policy. Medicaid has denied her as well stating I should obtain services for her conditions through the public school system. I complete applications for assistance on a weekly basis to various organizations but to no avail. Since her diagnosis at the age of 2 1/2 years until now at the age of 11, her cost of care has been my sole responsibility. I do not have any credit cards so I cannot charge her care. Lately, we have been selling Abby’s original artwork on Etsy (AidforAbby). I cannot work outside of the home due to a disability for which I receive a small amount of money each month. It's not easy, I will tell you that. I have the same hopes, dreams and plans for her as I do my other children. Along with the financial burden of medical bills, we want to get back on our feet and replace what we have lost. I’m hoping to raise funds first and foremost for Abby’s continued medical treatments, house downpayment and vehicle to purchase.

We (myself, Abby and her brother Nathan) are what they call a “displaced family”. We do not have a home of our own in which to live, I do not own a vehicle, and I have no other possessions of my own with the exception of the clothing, family photographs and artwork of my children. A neighbor knew of our plight and I firmly believe that God intervened on our behalf. He provides us with a place to stay and I can use his vehicle for transportation. We also have Abby’s therapy dog Buster, who is a beagle. He needs more help than Abby does on certain days! It is not easy to live with a child that has autism as any parent who has a child like mine will attest to. 

I have learned so much from my daughter that it would be hard to sum it up in one word. Each day I experience the joy of learning something new from her. I have had the honor of watching her make such tremendous progress in school even with Autism. I take her to all of her other therapy appointments outside of school. My daughter, like other children who have Autism have an inner sense of self. They know who they are and what makes them happy. They don’t seem to be affected by the same time constraints, worries, and anxieties about the future. I have come to appreciate more just living in the moment. After all, the now is really all we have! The past is in our minds and the future is not guaranteed with an outcome that may or may not ever occur.

The three most common early symptoms of Autistic Disorder are a lack of eye contact, a lack of pointing and a lack of responding. Many children with Autistic Disorder have little or no interest in making friends or establishing relationships and often seem more interested in objects than in people. They don’t engage in typical play activities like pretend play, and they use toys differently from typical children, preferring to line them up or else focus on parts of a toy (e.g. twirling the string on a pull toy or spinning the wheels of a new car). This was the case with Abby. She would spend hours lining up toys making sure they were all in perfect order. 

Abby was completely the opposite of her older siblings. While the other siblings had been quite active and verbal, Abby was quiet and reserved. I wasn’t initially concerned because I felt that there was so much noise in the house from the siblings that Abby would not be able to get a word in any conversation. Abby was an easy going infant and toddler and was not a high maintenance baby like the other siblings. In fact, Abby was quite content to keep herself busy with her own activities of lining objects up along the table or floor. About this time, I also noticed that she had sensitive hearing and that these noises would upset her. Noises such as a loud television, motorcycles, applause for an indoor area. She would put her hands over her ears and started to cry. I often thought she could hear a gnat fart as her hearing was that sensitive!

I became concerned around the time that Abby turned 18 months old that she did not have the vocabulary of other children her age. A visit to her pediatrician confirmed that she needed to be referred to a developmental specialist as she only had 5 words at a time where she should have had hundreds. Upon the pediatrician’s recommendation of two physicians, one a neurologist and the other a developmental pediatrician, we made the appointments. When tested, Abby had an IQ of 70, a score that, coupled with the fact that she showed significant deficits in communication skills, social skills and everyday adaptive behavior, Abby was ultimately give a diagnosis of Autistic Disorder.

Only people who have an autistic child can possibly know how it feels to hear the news of his or her own child being diagnosed with “Autism Spectrum Disorder”. How your world comes crumbling under your feet, how your heart wanted to stop the very moment, unable to block out what you had just heard. This was I and I am sure was the same way my husband felt when he heard the devastating news. Unfortunately, he never overcame the denial phase. Probably he was more in denial than me, for my motherly instinct was that something is wrong. At first, everything appeared okay. Our daughter, an energetic infant, full of smiles, growing lovely in all aspect, developing to her age, was able to talk, at least 5 words that she could utter and then at some point, she started to regress, in progress. 

These were some of the signs of Autism. I can recall trying to get Abby to say the word “milk” was a four hour struggle, with crying and tantrum, only pointing towards the refrigerator refusing to say “milk” just simply walk away and curled up on the sofa. Most of the time, I simply can’t get her to do anything; she was always in a “quiet state” staring. Abby will not make “eye contact”, sometimes response to her name, in a quick glance to us. She was very quiet, kept to herself most of the time even Abby’s food appetite had changed, she became an extremely picky eater. Abby would not interact with babies her own age while she was in a playgroup, keep clinging to me, or will play in a corner by herself. These were some of the changes had me wondering “Why?” Abby was a healthy baby otherwise; we live a normal healthy life, with no wild lifestyle, that can cause damage to my baby or myself. I previously had three normal deliveries of three healthy and normal babies before she was born. We were told it was not our fault as parents, and that the cause of autism remains unknown. 

Abby was also tested by the local school system for inclusion in early intervention programs that are available. She qualified and at the early age of 3, she started Special Education Class with a therapist assisting her. Most of the basic school lessons and basic understanding of the concepts of things around her were presented in a visual way, by using picture cards. As a mother, I am very pleased with her achievement and have seen a tremendous change of who she was and who she is at present. She continues to strive to make progress towards her IEP goals. Beside her school lessons coming along fine, she now has a best buddy at school that she relates to. 

She has mastered the basic techniques of doing things for her age group, like putting on her shoes, clothes (have trouble sometimes with her pants buttons) although she still does not pick out her own clothes to wear, using the potty, (had fully mastered the potty at age 5), and trying to brush her hair.

Abby does obsess about certain topics such as trains, horses and wheel or circles to the point where nothing or no one else seems to exist. She has a tendency to fixate on specific routine or ritual, have stereotyped or repetitive actions or movements or fixate on parts of objects (e.g. wheels of a train). Abby also has a heightened sensitivity to certain sounds, sights, smells, tastes or textures. Thus, a lot of her artwork is done in circles or wheels. 

Abby also has self-stimulating behaviors called stims. These are self-stimulatory behaviors. Repetitive behaviors, like spinning in circles or twirling hair, they are common in autistic people. They are not unique to those with autism, but the difference between the autistic stims is that they have a way of shutting off the brain to other stimuli. This can be a good thing when the brain is over stimulated and just needs a break. Don’t we wish we all had a way to shut out the world sometimes? But, if a person is in an autistic stim, it is near impossible to get their attention.

I also ask you to put yourself in the shoes of someone who's family is affected by autism. The battle of emotions, stress, guilt, worry, and mental distress can be overwhelming and exhausting. AND the families live with this 24 hours a day, seven days a week. 
Of course, like so many individuals and families that are out there struggling, I am no different. Do I wish I could have had a magic wand to change some of the past struggles that my family has endured, yes! Have I learned from these experiences, yes! Would I trade the bond of love that our family has come to enjoy because of all the struggles, no!
So to my daughter who suffers from autism, I love you exactly as you are, today, in this moment. I accept you for who you are. You are not broken. You do not need to be fixed. You are all a mother could ask for. I will love you no matter where this journey in life takes us. All you have to do is keep being yourself. That is what I truly love about you. You are just yourself!
Thank you for being you. Thank you for accepting me with all my faults. You bring so many wonderful things to my life each and every day. Thank you for inspiring me to become a better person and mom to you and others. Thank you for not giving up on me. Thank you for trusting that everything is working out exactly as it’s supposed to. I'm trying the best that I can and someday, yes, we will have a home again to call our own.

My Thoughts:

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