Questionaire For Thought

1.What are your children's names, ages, diagnoses?

Chucky is 5 years old and has been diagnosed with Mild/moderate autism and Sensory Processing disorder.
Buddy is 7 years old and has been diagnosed with Aspergers syndrome, Cri du Chat and Tourettes syndrome.

2. What would you say was the most challenging experience that you've had while advocating for your child(ren) so far?

I think the most challenging part of advocating for my children was the initial diagnosis. My son was receiving many services through Early Intervention for years and I had continued to express my concerns to the doctors for years. They kept telling me that he was just delayed and there was nothing else going on with him. Finally I started video recording his daily activities, meltdowns, speech, motor skills, ect. I brought this to the doctor and got a completely different response. It is hard for them to figure out what is going on with your child in 10 – 15 min. and they don’t always act as if they are having issues. I think the hardest part is dealing with the schools and doctors who may not see the extent of their problems as often as you do as the parent and so I have often felt alone, and doubted.

3. What was the most rewarding experience?


The most rewarding experience is a tough one to answer. There have been so many rewarding moments. In terms of advocating I think the diagnosis was the most rewarding but.. hearing my son say he loves me still gives me shivers. All the small moments that I have noticed weren’t as big a deal with my two girls cause they happened all the time are so wonderful from the boys. Like when they remember to say goodbye to me or when they want to snuggle! I remember when my son drew his first person and it had eyes, ears, mouth, nose and a belly button!! It was in May of this year and I was so excited. There are many rewards and I might not always see them but when I am made to sit down and really speak about it and think I can tell you there are endless rewards. The biggest of all is the smile of achievement when they accomplish another goal that nobody thought they would accomplish. Have faith cause in time they do surprise you!

4. Have you had any experiences where you've met with resistance from “those in charge.”

Most definitely, I have had teachers that argued his diagnosis, argued his abilities. Some who would say that he could do things that he clearly couldn’t. A doctor who thought that medicating my 5 yr old at the age of two was reasonable but wasn’t willing to figure out what was causing his distress. I had a neurologist that saw my older son and told me he had ADHD and wanted to put him on meds for the Tourettes. We tried it but when he became borderline paranoid schizophrenic, I wanted them stopped but instead she tried to increase them. My son is now off all meds and on vitamin supplements to help ease his anxiety and for him it seems to work. Not every child is the same and I wish that the doctors would consider this. I also found resistance with the schools although I have resolved that. It is hard to acquire services and even harder to ensure that the plans are followed.

5. Based on your experiences, do you feel that the role of advocate should be more along the lines of “defender ready to do battle” or “mediator, gaining acceptance and working on a compromise?” Which do you think is more effective?

Honestly, that is a tough call. In the beginning, I was a defender. I did not know any other way and I was not being heard. I really think it depends on circumstances because I think there are certain things that I will not compromise on but, I also had to put my guard down a little to hear exactly what they were saying as well. Sometimes they have wonderful thoughts for your child and as hard as it may be to see at times, they also want what is best for them. In terms of effectiveness, Mediator works better than defense because when you go in in defense mode everyone is on guard and your ears are not as open to what the others are saying.

6. In terms of the above question (#5), how do you view your own role as an advocate?

I usually go into the meetings as a mediator, always willing to listen and come to an agreement as to what is best for my son. It allows me to ensure the best for my boys without clouding my judgements based on my own fears. After all working as a team is more effective than working against a team!!

7. Do you have any currently unresolved issues, things you are actively advocating to receive?

No, I resolved all my issues at the end of last year to ensure they were starting school with all services in place and so far everything is working great. We communicate and work as a team.

8. If you could share on piece of advice with parents who are new to advocacy, what would it be?

Don’t react, respond. You are more likely to be heard if you respond in a calm manner with facts instead of reacting with emotion or fear. I would also suggest writing down questions/concerns before the meeting and try not to be like me and forget your notes at home. It isn’t as effective!! Make sure that before the meeting ends all of questions are touched on and discussed. This way you walk out of the meeting feeling as if you have received input on all of your concerns and that you all participated as a team not you sitting in a room of people discussing your child without your feedback. Don’t feel intimidated as it can feel very intimidating and keep it in your mind that children do act differently in school.

9. Is there anything you would have done differently?

I think the way I approached certain meeting could have been done more effectively but, in the end result I learned a lot and have accomplished what my beginning goal was without a lot of anger and head butting.

10.Do you feel that your child's (children's) placement is appropriate at this time?

Yes, I think my younger son is still in trial session as the class size is much bigger than they perceived but so far he seems to be adjusting well. I hope that as the year goes he will continue to do well. It is difficult for the teacher to see the social issues with my son so far because he is in Kindergarten. Many of the NT children have not been in school at all yet so, they are just learning social skills but Charlie has had three prior years of school under his belt and still seems a bit delayed to the children in his class. He doesn’t defend himself but the teacher is open to suggestions which makes it all easier. My older son is doing immaculate and I am very pleased.

11.Any final thoughts, ideas? Opinions? (Here's your chance to let it rip)

Please feel free to answer these questions as well. It helped me to put things into perspective and understand them better. I would love to hear what everyone else feels as well.