When you have a baby you only dream of how that baby will be in the future, you dream about when they will babble, sit up, crawl, walk, talk. Then you look into the far future and hope that they are successful in school, go to college and get married. Well that all changes for a moment when you hear the word Autism. In April 21, 2010 we received our weekly visit from our Child Development Specialist and she performed a test call the MCHAT. The MCHAT test is a marker to rule out children at risk for Autism. You are only allowed to miss less than three, Melanie missed six. So that is when our journey took off to find out if Melanie had Autism.
SIGNS AND SYMPTOMS
I will now go back to when Melanie was born. Melanie meet all her milestones. She sat up on time, crawled, walked at 10 months, she smiled and made lots of eye contact (so we thought). She was and is such a happy baby. I did not think anything was wrong until the questions began from my family. I had all the signs in front of me but I always managed to put an excuse with it, I realize now that I was in denial and hoping that she will "outgrow it." Melanie never BABBLED (most babies start this at 4-6 months of age). She never RESPONDED TO HER NAME, I thought it was because we called her mamas or mi bebe. We would stand right next to her and yell her name and she never looked to see who was calling her. I thought that because she was so focused in what she was doing that she couldn't hear us. Melanie would respond to a cartoon called Kailan. The moment Kailan was on even if she was in another room, she would run and stand in front of the TV and be glued to it, but if we called her name there was no response. When Melanie would watch TV, she would SWAY BACK AND FORTH FOR HOURS. That's not typical for a baby/toddler, most get tired and sit down, but not Melanie. That is called STIMMING.
She was also scarred of LOUD NOISES. I thought it was because Adam slept during the day (he works nights) and we kept the house very quiet. She was terrified of the vacuum. The moment she saw the closet door open her heart would race, she looked like she was hyperventilating and she would run for her life. She was also scared of the blender, blow dryer, and the dishwasher. If we went to peoples houses and they were making lots of noise, that would scare her. We once went to LIDO's (was aka Incredible Pizza) she freaked. she was so scared she would not let go of me, she would start laughing but it was not a happy laugh it was a terrified laugh. I now call it her nervous laugh.
Melanie NEVER ASKED FOR ANYTHING OR RARELY CRIED. I thought it was because we had her on a strict schedule. We always feed her on time and changed her diaper on time. One time my sister Betty and my mom came to babysit and Adam wrote them Melanie's schedule, they thought that was strange. They did notice that she never cried. Most babies cry when they are wet/dirty or hungry but not Melanie. We thought how lucky we were to have such a happy baby. When Melanie wanted something she would grab our hands and take it to what she wanted, SHE NEVER LOOKED US IN THE EYE BEFORE GRABBING OUR HAND and she never POINTED TO THINGS. Atypical child will look you in the eye then reach for your hand or point to what they want. Melanie did not do that, I thought she grabbed our hands because she did not know how to talk and for the pointing I did not think anything bad about it. Atypical child will begin talking at 9-12 months of age, they should say about 6 words by the time they are 1.
Melanie only said two words which was "GO" and "NO". She knew how to say "wow, wee, yeah, oh" but those don't count. She did say Dog once but we never heard it again. Melanie also did not understand words/commands. For example: if you gave her a ball she would play with it, then you could take it away from her, give her another toy to play with (to distract her). Then we would put the ball down and say Melanie get the ball and she would look at you as if you just spoke a different language. Also if you gave her a toy and say put it in the box, she did not know what you were talking about. I took Amber to get her drivers permit and there was a little boy he was 1. His grandmother gave him some paper to through in the trash and he did just that. That's something Melanie could not do. When it was time to change her diaper I would say Melanie lets go and change your diaper and she would either not hear me or look at me like she had no clue what I just said. One time I went to the library for story time and there was a little girl who was 1. Her mom said go get the diaper from your diaper bag and she did just that. Melanie did not understand when we asked her to do something or recognize things by their name. Melanie did not know how to imitate, play peek a boo, play with dolls, talk on the phone. I thought it was because we never did that and she did not own a doll or a phone. Atypical child will automatically respond to imitation and games. They quickly learn how to play with toys and talk on the phone. Melanie likes to occasionally LINE UP TOYS. We just thought that she was neat and organized, wrong again. Most babies begin having stranger anxiety at 6 months.
Melanie started at 3 months. She was scared of dark skinned people for example: Amber, Betty, my Mom. She would only go with Adam, Christine, sometimes Ashley and myself. I thought she went to Christine because she played with Melanie all the time and that she was scared of Betty and my mom because she rarely saw them. As for Amber that surprised me because she lives with us but she was scared of her. Melanie also EXAMINED EVERYTHING. If you gave her a book, she held it the proper way and it looked as if she was reading it, take it she was only about 9 months old. Any new toy she would look at it and once she figured it out she played with it. If you saw something and would say Melanie look, she would not look. Atypical child would look. Also atypical child would NOT APPROACH A STRANGERS after a certain age. Melanie did not understand that, she went with everyone and she sat on every ones lap.
For Melanie's first birthday most babies will smash their cakes and make a mess, Melanie did not do that. Melanie was a very "clean baby". She did not like to have her hands dirty or her mouth, if they were dirty that is when she would cry. I thought she was that way because my dad never liked to get his hands dirty with food. She also had a problem with textures. She would only eat some of the Gerber puree foods and that was it.
In the winter of 2009-2010 I would take Melanie to story time at the library. Melanie would never sit down, all she did was run everywhere, grab the other kids toys and try to take the book away from the librarian. I thought that she was excited because she is not use to being around other kids. Sounds like a typical child right, not really, all the kids in story time, stayed still and listened to the story. If we went out to eat Melanie would cry the entire time, it got to the point where we stopped going out to restaurants, instead we would call it in or go through the drive through.
Amber kept telling me that something was wrong with Melanie because she would compare her to her best friends nephew who by the way was born 4 days before Melanie, but again I kept putting up excuses. My mother saw a show about Autism and there was a little girl who would sway back and forth in front of the TV and my mom told me about it and said that little girl has Autism and she reminded her of Melanie. I watched a show on HBO about Autism and thought to myself, my kid is nothing like those kids on TV, Melanie will be fine and I'm just worrying too much. Little did I know that my life was about to change.
THERAPY
On Melanie's 1y/o visit (September 2009) the doctor became concerned that Melanie was not talking. She quickly referred us to Sooner Start (a program that's helps children with disabilities and developmental delays) and to have her ears checked. We tried 3 times to get her ears checked and finally succeeded. Everything was fine. Then people from Sooner Start began coming to our house to evaluate Melanie. We saw nutritionist, speech therapist, child development specialists etc. It took months to get the process started. Then finally on February 16, 2010, Melanie started her weekly visits from a Child Development Specialists. She came to the house once a week and gave us the proper training to continue teaching Melanie at home. Unfortunately Sooner Start only allows for one hour a week from a specialist and not per specialist. So if I wanted to have two specialist come to the house, that was not possible. Melanie did show great improvement during that time. She learned how to play with dolls, the phone etc.
On June 25, 2010 we switched from having a Child Development Specialist to a Speech Therapist. We had her for a few months. In one of our meetings with the Speech Therapist she informed us of a school called Early Foundations. They were interested in Melanie because of her age. Early foundations picks the youngest 2 year olds and 3 year olds and Melanie happened to be one of them. Once the child is 4 years old then they transition into the public school system for preschool. We are fortunate that because of Melanie's birthday, she gets to stay there for 3 years. Early Foundations is a program to help kids at risk for Autism or if they already have been diagnosed with Autism. They provide all the services for free. At Early Foundations she receives the proper therapy which is: Applied Behavior Analysis which include; Discrete trial teaching, Pivotal response training, Peer mediated strategies, Positive behavioral support and verbal behavior. It also teaches Floor time and TEACCH. She's also being taught speech and occupational therapy. I know these terms sound confusing but its the therapy that Melanie needs.
We were hesitant at first because we knew nothing about Early Foundations, but once we toured the school we were convinced. The draw back was that the school is 30 minutes away but because its for Melanie's best interest we went ahead and decided it was worth the drive.
Melanie started Early Foundations on September 13, 2010. She goes five days a week from 9am to 12 pm. On Mon, Wed and Friday she receives one on one therapy and on Tue and Thurs she gets to interact with kids from the mothers day out program. Since starting the program Melanie has made huge improvements. She now makes more eye contact, she responds to her name frequently, she has more words. She knows how to say bye, ball, bird, ba (for balloon), dog, baby, mama, dada, oh oh, up, down and she can sit at the dinner table without using a high chair. It's amazing how much she has improved in 2 short months.
Jumping back to when we took the MCHAT test. When the test was completed I was in shock, I could no longer smile or look at the Child Development Specialist. I felt as if time stood still and I could feel my heart break. It was like hearing that you had a couple of weeks to live and there was nothing you could do about it. I was mourning the loss of a living child. After I cried for awhile, I got the courage to call the doctor. I took a copy to the doctor and she referred us to some specialists. Unfortunately when the receptionist called for an appointment they would not make one for her because Melanie was not 2 yet (you have to be 2 before you can get an evaluation). She was told that we had to wait until Melanie was 2 before they could make the appointment. So of course i would not accept that, so I called the doctors office and asked for the phone numbers, they were hesitant to give it to me ( I don't know why), I told them that i wanted to verify with my insurance company to see if specialist were covered. So I took matter into my own hands. I called and made the appointment for October. At first they said they couldn't because she was not 2. So I told them, that she will be 2 in Sept and to go ahead and make the appointment in October and so they did. The average waiting list for an appointment is 6 months, that's too long for me. I've read that there is a window of opportunity to help children with Autism recover and if my child was at risk, I did not want to waste precious time.
No comments :
Post a Comment