a. How does it feel to be the parent of your child?
I was devastated when we were given the news; this diagnosis is really hard to take in. To be honest, I was really depressed for a long time. I never thought that something like this could happen to us—to our baby. Brandon looked like a normal baby boy; he developed like a normal baby would except he took his time getting to his mile stones. It wasn’t until he was three that we noticed developmental delays such as talking and walking and symptoms like seizures developing. I was really worried for Brandon when he was two. All of a sudden he became withdrawn. He would stare off into space for long periods of time, he would not engage when we try to play with him, he would just be so unresponsive at times. I thought something is wrong with him. Something is terribly wrong. I started all sorts of research and everything pointed to Autism. I knew something was wrong but I didn’t know what I was dealing with and I was told just to keep watch and to wait. That is the most frustrating part—the waiting. I kept trying to figure out things I can do to better reach him but as time went on the distance seemed to widen and I was going out of my mind trying to figure out what was going on in his head. It is the scariest and saddest thing not being able to connect to him.
b. How is your child developmentally the same or different from other children at the various ages?
Brandon is slower. He does everything later than other children. He didn’t start to roll over until he was nearly a 9 months. We didn’t see him walk until he was nearly 18 months. I kept on seeing other babies walk, babble, talk, play, etc, and I look at him and think why isn’t he doing what others can do by now. He eventually gets around to rolling over by himself, to walking, and to sort of talking but these mile stones should have been crossed ages ago. It doesn’t matter that he is slow, I love him no matter what, but I worry and I am increasingly getting more and more worried.
c. What professionals/agencies do you deal with? What services are available to you and your child?
I have gone to the local pediatrician the first year. It wasn’t until about the 26 months check up that the doctor took special notice of Brandon. I brought him in for a visit because he was having a fever. The fever lasted for three days and I couldn’t get Brandon to stop crying. It was one of the most nerve racking times in my life. I kept calling the office for a visit but the next appointment was two days from when I called. I went to the emergency room after a day, but they sent us home with some medication for the fever. I tried everything to could to help him. Headaches and fevers makes me worried because I had a brother who developed a brain tumor. We didn’t know the tumor had grown into the size of a golf ball until the fever and headaches set in. The CT scans didn’t show anything, it was an MRI which revealed the mystery to our family. After that type of experience, I am constantly terrified when there is the slightest mention of headaches and fevers. My doctor said I had to watch Brandon very carefully and I swear I did not close my eyes for three days, not until he was sleeping peacefully again and his fever had gone away.
We think now, that the fever was really meningitis and that it had exacerbated Brandon’s FXS (fragile X syndrom) resulting in his current mental condition.
d. How did you find out about the above services?
It wasn’t until we got him tested and diagnosed that we had any help. I feel like I’ve wasted so much time. When he was younger I knew something was wrong, but I was told to watch and wait. I think back now and I get so frustrated with myself for not doing more for him. I thank God for Sarah every single day. Without her intervention, Brandon wouldn’t have been tested and he wouldn’t have been diagnosed as soon as he was. I’ve done the research; kids don’t get tested until they are in school which means they wouldn’t be officially tested for cognitive disabilities until they have been recommended for testing by a psychologist at the earliest in first grade. Brandon would have been six or seven by the time something official happened in the school systems.
The services and resources I work with are:
American Association of Mental Retardation: AAMR website
The Arc of the United States
The National Association of Councils on Developmental Disabilities
e. What financial burden, if any, are you experiencing?
Financially we are strapped. Eric is the sole bread winner for our family. I stopped working while I was pregnant. We had agreed to have one parent at home with Brandon for the first full year, then I would do part-time work until Brandon was 5, and finally go back to full time work when he was in first grade. Things didn’t turn out the way we planned. After Brandon got sick with meningitis when he was two, the plan was altered. Later at three when he was diagnosed with severe mental retardation it flew out the window. Because Brandon needs so much care right now, Eric is our sole provider. It is really difficult financially for us because his insurance plan doesn’t cover for a lot of the special therapy Brandon requires. Speech therapist, psychiatrist, nutritionist, occupational therapist, special education teacher, physical therapist, and pediatrician are teamed up together and we work with all these people as well all try to develop a plan to help Brandon reach his fullest potential. His fullest potential… that seems very optimistic right, but his fullest potential is to function with minimal directed care and directed supervision. They say at best he will have the mental capabilities of a child of three years old.
f. What other information do you want to share?
Brandon was almost four, when we enrolled him into a daycare. While in daycare, the teachers had to really help him with taking care of himself (personal hygiene) and giving him special attention when it came to games and activities. I know that Brandon is three and should be more like a big kid than a baby, but he was still being very baby like. I thought that really socializing him with other kids would help him grow and develop faster. It wasn’t until then that someone had a real talk with us about Brandon’s mental development. Sarah the director of the daycare had pulled me aside to share with me what she was noticing about Brandon. I know Brandon was slow, but to be concerned that he was showing signs of mental “retardation” made me concerned, angry, upset, emotional… I don’t know the entire gambit of negative emotions flooded me then. I really wanted to pull him out of the program then and there. It was my husband who paid attention. I think I have had it out for the term “retarded” from its first utterance. I really hate it now. Sometimes, when I am having a conversation with other people and they say how “retarded” something is. I just want to walk right up to them and say what exactly is so “retarded.” I really want to be an advocate to change the medically accepted label of mental retardation. Brandon is slower to develop—he is mentally challenged, developmentally challenged, cognitively slower, has instructional disabilities—but he is not a retard!
Here are some good reading material for any parent who is dealing with MR/DI:
Children With Mental Retardation : A Parents' Guide
Differences in Common : Straight Talk on Mental Retardation, Down Syndrome, and Your Life
Parent Training and Developmental Disabilities
Toilet Training for Individuals with Autism and Related Disorders
Retarded Isn't Stupid, Mom!
Leslie's Story : A Book About a Girl With Mental Retardation
Here are some good reading material for any parent who is dealing with MR/DI:
No comments:
Post a Comment