By J.A.
Just as example, I can remember when the IEP team at the elementary school refused to allow one of Nick’s goals and objectives to be “Nick will be able to speak 500 words for the school year 2004-2005.” I spent 1 hour arguing with the DOE’s speech therapist that this was only a goal and since the number of words was below Hawaii’s 4 year old Preschool Standards, I didn’t think that was a problem. I told her that if she could not attain this goal, it would be alright because the goal is only something that she would try to attain. She refused stating that there was too much pressure on her to make this goal. She only wanted a goal of 100 words per quarter.
At that time, Nick could only say about 6-8 sounds/words and I guess that’s why she was so adamant about it. Finally we agreed to 200 words per semester which comes out to 400 words per year, which by the way almost as much as 500 words as originally requested. I didn’t understand the purpose of the argument other than just for positions of power during the meeting.
As a result, I managed to get Nick 2 hours of speech a week especially since he could not really say words coherently. As a nice Father’s Day gift, on Father’s Day in June 2005, a little after his 3rd birthday, we were taking a drive, on our way to Ko Olina. Literally all of a sudden, in the car, in between bits of his blueberry muffin, Nick started to say words that he had never said before. I took a scrap piece of paper and I started to write all of the words down. Soon, it was just too many for me to record. I’d say that was the best gift that we could have received.
In May 2006, I had Nick’s speech reassessed and he was speaking at a 3 year 8 month level. He had caught up most of his speech in the last year. Remember, up until this point he could only say about 6-8 words.
Then in March 2007, he was speaking with a 12 year-old vocabulary and reading at a 10 year-old level. What about that? I always knew Nick was smart but WOW. What an amazing leap in his verbal skills. I don’t know what triggered his speech. It was like a cork popped. Just imagine how ridiculous the DOE’s original position was of 100 words per quarter was.
Progress is all relative. I see Nick’s progress as slow. Others see it as fast. The things that matter to me the most are little things. When he was 2-3 years old, my husband and I rarely went out to eat. Nick could not sit still for longer than 5 minutes if that long at a time. Both of us took turns eating and it would be done in 15 minutes. It wasn’t the most healthy thing to do, I’m sure. Now, at 5 years old, we can all go out and eat together. We can sit and have a meal for 20-25 minutes without rushing. He can feed himself and enjoy the environment. We talk and giggle and have a great time. I can even get up and come back and he will still be sitting there eating. What a luxury.
I am now able to enjoy a stroll through the mall with him, casually talking and laughing with him. What a change. I can remember when he was younger and I would have to plan an outing to the last detail to avoid any outbursts or tantrum in public. I would schedule the outing before lunch, bring all necessary snacks and even lunch just in case I missed that “cut off” in which he would just be so hungry that it would be too late to avoid the tantrum. I would have 2 changes of clothes in the car, diapers, etc everything, for those just in case times. Everything had to be planned in advance. It was exhausting for me and my husband. Nevertheless, now, I can actually have a conversation with Nick as we walk around, we window shop, we stop to look at the fish in the pond, we throw pennies into the water fountain and we are able to truly enjoy each other’s company. It is such a wonderful, wonderful change. This is how I imagined motherhood to be, really enjoying time with my son without having to worry about things that other people don’t normally worry about. I don’t know who to thank, either the Gods above, Miss Jenn, or just maybe everyone who has helped us along the way. It is truly a blessing and joy.
The best part is that I love the fact that Nick can tell me that he loves me. That first time made me cry. I don’t really remember exactly when it happened but we were trying to put him to bed. I was lying next to him and he just told me that he loved me. It just came out of the blue. I wasn’t expecting it all. Of course, being the greedy mother, I wanted to hear him to say it again, and the moment had already passed like it never happened.
Today, I can actually enjoy the company of my son. It was both challenging and exhausting when all I did was serve him hand and foot when he was younger. I felt as though no matter what I did, or how much I planned, it was never enough because there was always something that led him to a tantrum or outburst. For the most part, I didn’t like taking him out of the house. I didn’t know how to react with him when he tantrumed in public. When he was small in size, it was easy to just pick him up and leave the place. Even now, it is easier and it is not. If he resists, it would be difficult for me to take him out of the place without looking like a bad mother. I remember one time when he had a long tantrum; I had to sit with him in the car for almost an hour as we sat in the parking lot. To make matters worse, we were fairly visible and audible and I was sure that someone was going to call child protective services on me. I couldn’t drive because he could hurt himself and worse yet, we could get into an accident. I remember those days and I am just as easily likely to forget them. I hated those days too.
As for the DOE, I can’t say that I am an expert on their antics; however, I have learned quite a few tricks along the way. I try to pass along my experiences to other parents. In the past, the DOE has been known to write policies and procedures to make things even more difficult for parents. I just don’t understand why a public school system supported by taxpayer dollars is so adversarial to the very people who finance it. It just doesn’t make any logical sense. Nevertheless, as parents, we should help pave the way for other parents. I only hope that in my struggles that I have helped make it easier for someone to acquire services for their child. That’s all that matters to me. I will keep speaking out for my child and I hope it will encourage others to do the same. As parents, we can make a difference if we are united. Otherwise, we will always remain divided.
TAPOSITIVELY 