By: Stephanie Synder
Alex was diagnosed with mild to moderate autism and ADHD at 2 years 8 months. I knew something was going on when he regressed and lost his speech soon after a high fever with double ear infections. It was like night and day.
Once this happened, Alex became a different child. I knew something was going on but I honestly had never meet, that I know of, had autism. Thus began our journey into learning how to help our child. I had a great team from First Steps through the Kentucky Commission for Children. These therapists and case managers were the first in a long line of people that I started to gain knowledge from.
1. You know your child better than anyone else. Accept this, learn this, and let it guide your decisions. There will be plenty of doctors, educators, etc. that will say they will never, they should not, etc. YOU and only you as their parent should be determining this. Now, that is not to say that you should not seek guidance, listen, and learn and also realize that even though you want a certain future for your child, is that realistic or would this just be more for you?
2. Once your guide (child) on this journey shows you what they are capable of, then research all the possibilities for them. This research will enable you to be more knowledgeable that you are not reaching out too far for your child, you are being realistic, and you know how to accomplish this. The most important item that you can do for your child is to be engaged and prepared for their annual IEP meeting. These meetings will start prior to your child being in school (or should and if they do not time to research IEP Law and Rights). If you yourself have not had time to research or need assistance, find a local person to assist. The IEP (Individualized Education Plan) is the plan for your child. Each IEP is crafted with only one child in mind, yours! It is important to ask for a copy of the plan ahead of time so that you have time to review prior to your meeting. Ask about changes and/or notes. Remember, the changes should be the best the school system can do for your child. It does not hurt to ask and ask for an explanation of why certain requests cannot be fulfilled. Keep a record of all emails and letters.
3. Remember that all IEP plans can be adjusted at any time. You can call an ARC meeting at anytime. These meetings will assist with changes or adjustments that may need to be made to the IEP prior to the annual meeting. If the meeting is in regards to a particular faculty or staff member, make sure to make notes, cite examples, etc. prior to your meeting. It is best to try to speak with the faculty member about your concerns. If that does not remedy certain issues, then call the IEP meeting. If significant enough, contact an advocate or an attorney to go with you.
4. Remember that your child may learn differently than others and that is fine. Visual cues, extended time, etc. can be a couple of items that will assist your child to overcome obstacles when learning. Alex was best with little to no distractions, headphones or ear plugs, etc during test taking. He also had a reader that would read questions to him or they would record themselves asking him and he could relisten to it if he did not understand. This definitely assisted him. We also would make practice test on Quizlet. Yes, this took time to prepare and type out but your child’s educational success is worth it.
5. Ask for help when you are drowning. My Alex would get stressed when I would get stressed even if I tried to hide it. He could feel it. When I knew it was impacting our relationship, it was time for someone else to step in and assist me with tutoring him. I did not want our relationship to be just teacher and student, so we found a great tutor. She has been and continues to be a member of our family. The amount of stress that she took off my relationship with Alex was amazing and we were able to be mother and son again. Amber, our tutor, now family friend, will never realize how much she gave to me as a mother. She cares and loves Alex just like she does her own brother. She will continue to be in our lives.
6. If your child is verbal and can speak their own mind, engage them in their future plans. I have always been open with Alex about his diagnosis. But I also make sure that he knows, that is all it is, its a diagnosis. That does not make him who he is. He has choices, emotions, dreams, and goals just like everyone else. I make sure before we go down particular paths, such as a higher level of high school diploma, that he understands the additional study time that it will take and that this will limit his precious computer time. I have been open and honest with Alex about driving, guardianship, living away from home, etc. that he will enter into in his adult life. These are his choices. I will be there to support, encourage, and assist and learn what is the best way to be there for him.
Alex’s senior year did not end the way it was suppose to. He did not get to dance his final dance, he did not have prom, and he did not have a “normal” graduation. However, July 24 at 8:00 on the OHS Stadium field with masks and socially distanced chairs, he graduated. When he received his diploma that he had worked so hard for, he lifted it above his head and he realized what an accomplishment and achievement he had succeed. It was at that moment, with tears, that I realized that my young man would continue to teach the world not to look at a label but look at the person.