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My son is a child with a special need. He is verbally and neurologically apraxic and requires a good deal of speech and occupational therapy. He has been in Early Intervention since he was 11 months old.
The last year has been a trying one for us. We received his diagnosis of apraxia last summer. We had scheduled him for extensive speech therapy in the local hospital to supplement what the local Intermediate Unit was failing to provide through the summer months. Evan was entitled to a LIFETIME MAXIMUM of 6 weeks of speech therapy and we decided to use it all at that time.
His therapist last summer did extensive testing, using tests which none of his speech therapists had used - tests which quickly identified his problem as apraxia.
Its funny because for 4 1/2 years we hadn't a clue what was up with Evan...the day it had a name - apraxia - and we were able to meet parents whose children had the same condition and network with them, we suddenly were given direction and purpose. We had a plan of attack!
Last summer was a trying one for us. We were forced to take our local Intermediate Unit to a pre-hearing conference (the next step to due process) in order to get adequate speech therapy for our son! I think that that is a terrible thing for parents to suffer.
Originally, we were led to believe that our son, who has been in Early Intervention since the age of 11 months and who is now 4 1/2, was not entitled to 12 months services. This, of course, is what the Intermediate Unit would have you believe. That way, they save some money through the summer. However, I found out through a great network of women and also through some readily available resources, that children under the age of 5 ARE entitled to 12 months worth of services. When his Speech Therapist wrote us a note bidding us adieu for the summer, that's when we began making phone calls. When our calls went unanswered, we filed for a pre-hearing conference.
At the conference, we met stiff opposition to our requests but eventually, they relented and approved speech therapy to continue through the summer at a rate of 2 times a week for 30 minutes a time. This was around the middle of June. Finally, on 1 July, we heard from our new therapist. (Traditionally, the therapists in our IU only work through the school year....that is why they don't make it well known that summer services are available.)
I really can't say enough about our "summer" SLP - Scott Turnbull from Pennsylvania IU #7! He kept me informed, he called to tell me about my son's progress, he called with ideas and my son actually learned his name and looked forward to working with him! He called last week and let us know he would be working with Evan again this summer and I was delighted. Its refreshing to get a therapist who is open to new ideas, new therapies and who consults with the parents as well. Our old therapist made it well known at an IEP meeting that she really couldn't care less about much of anything except her upcoming retirement.
Sometimes the providers of the services have daunting names like ARC or Handicapped Services but you need to remember that for the most part, their services encompass a broad area of people. I remember my son's Godmother had a serious problem that the ARC was providing his therapy. To me though, it never mattered. I always knew what my son's problems involved. It never really mattered who could help, just that someone could.
In August, Evan entered Kindergarten with his class. Its been a rocky 6 months since then. First, the school tried to rush the IEP and we ended up with a program which was completely inappropriate for Evan and which concentrated on behaviour skills. It seems that most teachers, at least in our school, would rather see a learning delayed child as a problem and beat that back than to open up and see what reaches that child. Unfortunately, they had never dealt with me. After the first IEP meeting, I was distraught because I knew I had failed. I felt like, here I am, this advocate, all schooled in the latest and greatest special ed legislation and I couldn't even get a decent IEP together for my son.
As is my right under IDEA97, I reconvened the IEP. Remember, you can do this at ANYTIME, NO MATTER WHAT! I called the ARC-Westmoreland and got a professional advocate whose services were free to us. And....armed and ready, I went to the IEP. Our first had lasted a little less than 45 minutes with people putting coats on and leaving before I even knew what had happened as it was lunchtime and they wanted to get out. The second, I am proud to say, lasted nearly 3 hours.
Evan's teacher had bitterly complained of Evan's behaviour. For example, he would say he had to "pee" instead of "may I use the bathroom". He would talk out instead of raising his hand. Because of this, not once had he earned what she gave out on Fridays called a Happy Gram for good behaviour. He had always received Improving Grams which basically said "I failed because I did this." I had a problem with this method because I saw the Improving Grams as a negative...telling the child what they had failed to do rather than telling them what they HAD done and maybe what they COULD do. We wrote into Evan's IEP that he was to get TRYING grams instead. We also decided to use a daily icon chart which showed picture representations of the behaviour she expected from him. Daily she would update this and send it home with him so we could be on top of a situation when it developed. Since then he has brought home only 1 Trying Gram and the rest Happy Grams. I think this method allowed her to see his successes too rather than trying to look back over 5 days with 50 little kids (2 session) and determine what needed to be accomplished. It has also really boosted Evan's self esteem because he now feels successful and able to please this very important person in his life.
Another issue which seemed to be critical at the time was Evan's distraction and lethargy in the afternoon. I was afraid they would tell me to remove him from afternoon Kindergarten and place him in the morning. If it was necessary then I wouldn't have hesitated but I was very reticent because I felt he had bonded with the kids in his class and socially it was important to maintain those relationships. Still, and rightly so, his teacher was concerned that he arrived at 12:30 and was dragging bottom by 2:00. We maintained that he was sleeping from 8:30-9:00 at night until 6:00 the next morning which was normal for him, that we refused naps after school and couldn't get him to take one before....and I felt they looked at us like we were the world's worst parents. I laugh now. Our advocate chimed in and suggested Evan have an afternoon snack...maybe a sandwich and juice or a piece of fruit. We agreed to try and started the next day. It was resolved within the week. Apparantly this little pick me up solved some really big concerns. This goes to show sometimes its little things we don't even see that can be the biggest hurdles.
So now Evan receives physical therapy 2 times a month, occupational 1 time a week, speech 2 times a week, vision 1 time a week and special education time every day for 25 minutes. I try to keep on top of this by keeping in constant communication with his therapists and teachers as to his progress. I also don't measure him against any other child...just Evan. If he can do more today than he did yesterday, then that is phenomenal. We have goals set through the IEP and keep track of those each grading period.
Evan will be moved to first grade in June and with that comes new sets of problems for us like navigating the cafeteria, writing more and reading. The best thing is that by our efforts and involvement in making this experience so focused on Evan and so positive for him, he adores school, his friends and his teachers. He enjoys going. I accept that he may not be able to do what his peers can do right now but its important to me that these relationships are maintained and that the policy of inclusion is followed for him. Our town is small and these children will know him through the end of high school so that is important to me that he be with them as much as possible and not singled out for special ed or therapy more than is necessary during the school day.
Our goals now include writing his name, the alphabet and numbers. He has started to learn to tell time in a rudimentary way, knowing what time it is by the big hand and I must mention this IS the way ::I:: taught him. Physically he is still experiencing some weakness...and so we work on developing his left side which seems to be the weakest but he is quite athletic and plays basketball at the YMCA as well as swims there. The things I adore about Evan are his eagerness to learn and his unwillingness to give up. I am sure he will accomplish much in his lifetime if he can always retain this love of new experiences and aquiring new skills.
If you have any questions about your children or need some resources or just a shoulder, please contact me! You can email me privately if you wish and I WILL GET BACK TO YOU!
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Apraxia Kids Home Page - great resource for treatment ideas, insurance questions, general information! Be sure to join the mailing list for GREAT resources and support! Prader-Willi Syndrome Association of New Zealand Developmental Dyspraxia National Organization for Rare Disorders Children's Defense Fund National Center for Missing and Exploited Children Justice-For-All Page - Alerts about Congressional actions that affect our children and what YOU can do to help! GET INVOLVED!!! KidsCampaign Web Page - the information, knowledge and action center for adults who want to make their communities work for kids!
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