Basic Blue Print for Advocating for Your Child with Special Needs
I am just a Mom. I never planned on being the parent of a special needs child. It was not a club I wanted to join. Frankly, it was not something I ever imagined could touch my well organized life.
You see, I always did things the “right way.” I figured if I did, then nothing bad would ever happen to me.
But, everything changed when Wyatt was born. You see nothing was as I had planned. But I can tell you that our lives have been profoundly enriched by the gift of our son. It has not always been an easy road. Our son Wyatt brings joy to our lives. He is the light of our lives. I hope that by sharing the following ten points that we might be able to help other parents like Jim and me.
Learning to advocate for your child is an acquired skill. I can’t say I have done it all perfectly. I can share what I have learned from the knocks and falls I have taken on the path to help our son overcome autism, apraxia and a limb difference.
Here are ten points I hope will help you or someone you love:
Take Care of Yourself:
It is exhausting to be a parent. It’s even harder when you have special circumstances draining your energy. I know I was just trying to make sense of the card I had been dealt. Then, when I anteed up my parents and friends never ending questions and concerns, I thought I was going to explode. You have to find time to just breathe and slowly accept the challenge you have been given. Find your release through a church, an exercise class or merely by sitting quietly in a chair for a set amount of time. You have to gather yourself up because your child and your husband or partner needs you.
Tie the Knot and Hold on Tight:
It is a journey. The road will be long but there will be plenty of rewards once you open yourself up to them. Someone once told me when Wyatt was a baby, “Knot the rope and hold on tight. You will swing back and forth, round and round but eventually, you will find your way to help your son. It does not happen overnight.” It’s true. I know I have changed a lot during the past six and half years. My son’s therapists have told me so! The path to acceptance is part of the way to helping your child. It takes time and a lot of hard work.
Create Your Team of Support:
There are people out there who want to help. Build your own team. I simply named mine, “Team Wyatt.” I recruited the obvious: therapists, teachers, administrators, clergy, family, friends and anyone who I thought could help. Find a way to keep everyone informed and on the same page in planning for your child’s therapy and educational regimen. Like any successful team, you need a game plan and a means to share and implement the plan. Talk to other parents to network [1] and to get ideas. You will find there is help in many unexpected places. This team helps me plan, overcome issues and celebrate even the smallest milestones.
Stay Positive – Avoid Negative People:
You have to be a bit selfish to help your child. You will find there are plenty of other parents out there who have it worse than you do. There is a Blessing in learning about others’ challenges that makes you grateful for your own problems. However, I think you have to be picky to sustain your own core foundation of positive energy to help your child. Parent support groups are wonderful but, you need to find the one that fits your personality. My heart would ache for many of the parents I met. I wanted to help them but I knew I needed to help myself first. I sought the support of others who had similar temperaments and outlooks. Again, you need all of your energy to keep moving forward for the sake of your child.
Get Organized:
Create a binder or a set of files to help you keep track of insurance information, resources, IEPs (Individual Education Plans) and information you collect from other parents or resources. This includes having a note pad ready when you call or meet with other parents or professionals. Don’t count on them to email you a recap of your meeting. Most people are busy and they are giving you what they can. Make it easy for them to help you by being organized. This includes writing down questions before you meet with doctors, therapists and teachers. I recommend creating an agenda before heading into a meeting. It helps everyone understand your concerns. It also helps you collect all of the information you are seeking.
One Plan Does Not Fit Every Child and Every Family:
Stay home or work? As a mother you can’t win because someone always has an opinion about what you should be doing. Everyone is different. You have to decide what works for you and your family and don’t let anyone make you feel bad about it. I know I have had another mother say to me, “Well I did not have the luxury of having a career.” I can tell you that I have a career because I need to pay for $20,000 in therapy and services not covered by insurance. I also knew that I could not go to the bathroom without my son melting down. I needed money for his therapy and I needed him to learn to be independent. It was very hard. I cried every day the first two years I went back to work. Wyatt is now in a general education classroom with pull-outsupport. He has academic goals. His behaviors remain in check. This would have never happened if I stayed home. Again, everyone is different; find what works for you, your child and your family.
Advocate Like Your Hair is On Fire:
Don’t wait! Intervention is the key. You can find information on the internet to support any opinion but one thing remains clear: early intervention brings results. As a mother you need to stick to your “gut feeling”. I once worried constantly about what people thought. When my son was in the NICU something changed. My doctor said, “You are not trying to make friends. You are fighting for your child’s life!” I have always remembered that but there is a balance to blowing people out of the water and getting them to work with you. Go back to points three and four. The bottom line is that you can’t wallow in what caused your child’s difference, you don’t’ have time. You have to make a plan and move forward. The clock is ticking.
I will tell you that our son went from being curled up in a ball on the floor crying, hiding and not talking at age 3 to entering Kindergarten and talking at 6. It can be done and you can make it happen!
Seek Out New Resources But Beware of the Snake Oil!
I know that I would do just about anything to get my son to talk, overcome his sensory issues and to even have a right hand. The reality is that there are plenty of people out there who will sell you anything to help you feel better. Unfortunately, many appear well intentioned but really do not have any science or fact to prove that their wonder product will deliver results. Do your research, consult professionals and follow your gut. Also remember that not every plan works for every child. Go back to point six!
Celebrate and Honor Your Child:
Anyone who knows me will tell you that I am crazy about taking photos and videos. I email my “Team Wyatt” several times a week. Why? Because I want to celebrate all that he is accomplishing and all that is possible. I truly believe that anything is possible through love and faith. When I celebrate I believe I unite my team and therefore further support my son. It has also led to a path of acceptance and peace. There are gifts in any situation. You just have to be open to them.
You’re the Mom:
There is something very powerful about being a mother. You will recognize it when you develop “Mama Bear Syndrome [2].” I will never forget the first time I felt the veins in my neck popping out during an IEP meeting. I felt like I was becoming the “Incredible Hulk.” It bothered me immensely. I did not understand how I could be professional and composed during the most intense business presentations. However, when it came to my child, I was protecting my cub! You do need to find a balance and find your support team. Go back to points 3 and 4!
This list is just a basic blue print to help any special needs parent begin to advocate. As I have mentioned, it is a process. It begins with faith and love. You have to find a way to get people to work with you. Everyone wants to be on a winning team. Your ability to foster support for your child begins with you.
Helpful Articles
- Advocacy: What Does That Word Mean to You? [3]
- Early Intervention: First Steps in the Right Direction [4]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [5]
- Advocating: What You Need to Know to Become a Better Advocate [6]
- “Instruction Manual” for Your Child With Special Needs [7]
- Financial Planning: For Those Who Are at the Starting Line [8]
- Baby Steps Tips for Encouraging Your Child Toward Independence [9]
- Embracing Your Child’s Best Ways of Learning 12 Different Ways to Learn [10]
- The Politics of Special Education: The Information You Need Right Now [11]
- A Review…What Is Special Education [12]
- Empowering Your Child’s Best Advocate: You [13]
- Whether it’s Your First IEP or You’re a Pro: 10 things to Cover at the Meeting [14]
- IEP … I Do’s Building a Viable Home-School Relationship -It’s like a Marriage [15]
- Requests Prior to IEP Meetings: Eval Reports and Draft IEPs [16]
- Where Do I Go for Evaluations [17]