How does it feel to be the parent of your child?
There are so many different emotions that run through my mind when you ask this question. Of course, I love and cherish my child. One thing I can definitely say is that he has made me a stronger person. I have become a person I never knew I could be because I have had to advocate for my child since the day he was born. My child has brought out so much good in me and I love him for it. But I also know that if I did not have a special needs child, my life would be much different. It would be easier, to be honest. I would have a lot less financial strain and a lot less stress. One of the hardest parts about it is that it affects every member of my family and every relationship within my family. It affects my relationships because my special child demands a certain amount of attention in order to function and in turn, the rest of my family gets my leftovers.
As awful as this sounds, I find myself thinking why me? There is so much guilty emotion constantly rushing through me. Did I cause this? Could I have prevented this? I was so careful when I was pregnant. I have constant anxiety about his future, so much that I often don’t sleep at night. First comes the immediate anxiety, what issue will I be forced to confront today? Then there is the long-term anxiety. Is he ever going to be independent? Is he happy? What is his definition of happy? I think that it is the unknown that hurts the most. Lastly, I find myself feeling angry. I’m angry because people treat him differently, I’m angry because people don’t even try to understand. I have definitely realized that people are just not nice, adults and children alike.
How is your child developmentally the same or different from other children at various ages?
Max is physically developing the same way as his peers. Max looks “normal” to other children. He is caring, affectionate, and funny. He reminds me of what any pre-teen boy should be. Although he looks the same as other children, he does not think in the same way. He lacks social and academic skills. He is capable of having meaningful, but very immature relationships with both sexes. But many people seem to feel uncomfortable with Max because of the Obsessive Compulsive tendencies he exhibits. Also, he is much further behind academically. My child took longer learning how to speak, walk, and attend to his personal needs. There are some things that my child will never be able to learn. He will always be 2-4 years behind the children at his grade level and this breaks my heart. He is in the 9th grade but functions at a 5th grade level right now. His IQ is a 55 (the average for his disability is 50-70). His adaptive skills also got hit. Max may seem clumsy. He does not show a lot of interest or inclination towards personal hygiene or life skills. While other 9th grade boys are wearing deodorant and cologne to impress their female classmates, my son is fighting me to take showers. I think that for most people, it only takes a short while to realize that there is something different about Max.
What professionals/agencies do you deal with? What services are available to you and your child?
The Regional Center of Orange County has been a huge part of lives since we found out Max was Mildly Mentally Retarded. You can find them at http://www1.rcocdd.com/content/. They are a private, non-profit organization contracted by the state to coordinate life-long services and support for people with developmental or learning disabilities. Once you join, you are assigned a caseworker. That caseworker has met with us every single year since the year Max was diagnosed (about 7 years now).
Another great agency is an organization called The Arc. You can find them at http://www.thearc.org. They provide everything from doctor recommendations to counseling. I really liked their support groups networking system. The Arc requires a paid membership, but has turned out to be worth our while. The only other agency we have dealt with has been the Jewish Federation. They have provided family services and scholarships for Max. I’m sure many community churches provide this support as well.
How did you find about the above services?
When we first started noticing that something was different about Max, we went to dozens of doctors. We had multiple opinions on a diagnosis and were left feeling most confused. To be honest, the doctors only really gave me prescriptions. Funny enough, they were always willing to do that. Almost all of my resources came from other parents of exceptional children. I met so many parents just sitting in waiting rooms of doctor’s offices. My resources quickly tripled into friends of my new friends, and even their friends.
I also did a lot of online research. It felt like days at a time that I was at my computer. The services I found online were not always reliable though. I would definitely say that the other parents were my best outlets for information. Besides introducing me to different services, we offered each other much needed support and advice.
What financial burden, if any, are you experiencing?
The financial burden started the minute that I felt that there was something not right with Max. It progressed even further once we started searching for a diagnosis. Then came all of the different therapies (social skills therapy, speech therapy, etc.). Tutoring is a big financial burden as well. We were not forced to do these things, but if we had not paid out of pocket for these extra things, my child would not be where he is right now. Realistically, we should have done family therapy too, but we just couldn’t afford it. Once again, the rest of my family got the leftovers. Some insurance plans don’t cover these things. If at all, it’s minimal. If you don’t have money, your child may regress or stagnate. This dilemma almost forces you into debt. Everyone wants the best for their child. The financial burden seems to be indefinite for our family. We sacrifice so many everyday luxuries to provide Max with the best resources.
What other information do you want to share?
I think that I would want teachers to know that you can’t take square peg and make it fit into a round hole. Max learns differently than other children. Every child learns in a different way and at its own unique pace. It is so important to take the time to determine if your students are auditory, visual, or tactile learners. You can change a child’s life by doing these little things. You can change a child’s life by having them come in at lunch and recess to practice. If you’re going to take the time to do anything worthwhile, take the time to change a life because we are all capable of learning. It just might take a little longer to do it. Being Mildly Mentally Retarded does not mean they are incapable of success. You can’t let yourself forget why you became a teacher.
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