Advocating: One Step at a Time

 

Are you feeling overwhelmed and desperate to find a source of help, knowledge or understanding? Please keep in mind that you are not alone. There are many with struggles similar to yours. As you have been trying to work with your child you have probably found yourself talking to other parents who seem to have similar struggles, or searching online to learn everything you can that may be of help. You have probably sought the shoulder of a trusted family member or friend to cry on. You may have sought some counseling or therapy, or asked your family practitioner for guidance. You may have even tried some counseling or therapy. But you may feel like nothing is working or you still need additional support. 
It's important to not discount what you have already learned and to take things one step at a time. Each time you reach out to an individual and gain information you are making progress in helping your child. With each contact and each step you will be able to uncover additional resources that will broaden your knowledge. In many ways you are like a scientist trying to discover solutions, and like Thomas Edison, each attempt is more knowledge gained even if you aren't completely successful yet.

Two women sitting at a table talking
Sharing concerns and ideas with friends can be unifying, strengthening, and help you gain more information.

Getting More Support


If you are feeling like you still need additional support, a good place to start is to find someone who can test and provide a diagnosis for your child. Ask the school for clinics or neuropsychologists who can perform a neuro-psych evaluation and a psychiatrist who evaluates the test and then provides a diagnosis for your child in a follow-up visit. Be sure to ask a lot of questions, as much information is not provided or offered unless you ask for it. Most schools or public services only provide some level of services to those with a diagnosis. 
If you find yourself hesitant to obtain a diagnosis for your child due to concerns of labeling, etc, you will have to weigh the pros and cons. It will be especially helpful to talk to other parents who have had similar experiences, especially those with children the same ages so they are familiar with professionals currently seeing children in your area, and those who have similar children who are grown who can provide a wealth of 20/20 hindsight and things they have learned throughout their journey. 

Be Your Own Research Strategist:


You've probably already used google to try to find answers. Here are some sites or organizations that can be very helpful in your search. While you may find that some people don't take your research seriously, when you can state behaviors and situations factually and with conviction you will be more likely to be heard. So take notes, and write down behaviors that happen, the surrounding circumstances, such as what seemed to trigger the behavior, what responses make it better or worse, etc. Be sure to write down behaviors that happen often so you can state "this behavior happened three times last week, or 10 times last month."
This strategy is not intended to make your busy, crazy life even more difficult. Some helpful strategies to log this information may include using "voice to text" in a document on your phone. You can even do this in an email and send it to yourself or your spouse so you can both add to it. If you have a spouse, it is very important to collaborate on this because you will find you both remember different situations. In this way you get an even more complete picture of what is happening on a regular basis in your life. Another option is to text or email yourself and/or spouse while sitting in the doctor's or dentist's office or other places you are waiting. Instead of carving out more time for this you can use some unproductive time periods to get it done. Working together with your spouse will also help you be more united, especially in the face of often difficult situations.

image of two parents talking with laptop in a small cafe setting
Collaborate with your spouse on the needs you observe with your child.

Getting Information

 
You may wonder where to start or what to ask. Below are some questions or resources that should help you obtain information and know what additional questions to ask.


1. Ask about preschool screening:
For a preschooler, ask your school if they have a preschool screening program that helps identify children who may be lagging behind in certain skills and may need additional attention to help them catch up and/or be prepared for Kindergarten. Start asking early as this screening only happens once or twice a year. 

2. Ask for recommendations from teachers. 
Some preschool teachers will provide a letter of things they have observed about your child that is helpful for starting Kindergarten, and Kindergarten or higher teachers can offer insights to the upcoming teachers as well. 

3.  Ask school counselors for recommendations for counseling, therapy, or where to get a neuro-psych evaluation done.

4.  Ask other parents what resources they have found.
Talk to other parents with similar situations with their children. Ask them who they reached out to, what groups there are in the community. Ask them how they went about successfully accessing services in the schools and communities.

5.  Ask a community support group.  
Some national organizations can point you to more local groups that you can reach out to.  For example, the national organization Autism Speaks can direct you to resources within the state you live in for children with autism. You can also find private groups on Facebook, such as the Family Wholeness Private group for those who have completed one or more of our courses, where you can share experiences or ask questions. (See resources at end of this article.) Some of these groups can put you in touch with an experienced person who may be able to attend your school IEP meetings with you to help you feel supported, ask the questions you don't even think about, and/or help push for services you may not know are available to you. 

6.  Use a coach or group support leader. Coaching can be out of reach of some people's budgets but you may find support groups with qualified discussion leaders that are very affordable, cost less than formal counseling and can be excellent support options. (Remember that coaching or support groups are not intended to replace working with a licensed professional, such as in therapy or counseling. Please seek help from a licensed professional if you cannot ease the burdens you carry with the resources you have. We all need to acquire more resources at times in our lives.)

image of parent meeting with school personnel
Meet with school personnel to discuss your child's needs.

Meeting with school personnel:


It can be very helpful to have someone who is familiar with IEP's or other services accompany you to meetings with school personnel. Check your local state laws, but in general, they cannot restrict you from bringing someone with you. You will have to find and establish a relationship with someone you trust with the information they will hear about your child. The advantage of them attending is that they will know what the school must do to comply with the law and can point out those things, which are often things you may not know about. You might find a friend who is  a retired school worker or who is a social worker. Local community groups are a good resource to help you find an advocacy assistant. Even though it can be difficult to find someone to assist you, if you can find someone it can be very helpful. It also helps reduce the feeling that you are alone facing the school personnel who at times may seem formidable to you. Then relax before you meet and remind yourself that the school personnel are also human and they have emotions and needs too. Treat everyone with kindness, even when you need to be firm or stand your ground on something. Do everything you can to be informed before you meet.

 

Going out in public or to school or church:

 

Try to learn the triggers your child has so you can work with those triggers to optimize the experience, or minimize the chances of a meltdown, including your own! :)  

For example, if your child can only handle a certain amount of noise and numbers of people, maybe you can run errands when the child does not have other activities in the day that require him or her to be with a lot of people so that at a birthday party hopefully the child is not already maxed out on how much social stimulation he or she can handle. 

You might remind the child ahead of time that you are going to walk into the grocery store and the loud fan is blowing air right in the entrance, and make a little game out of blowing air at each other in preparation for walking through the store entrance, especially if you noticed the child reacted negatively on previous visits to the store. Similar preparation is helpful when you enter a bathroom that only has loud air blowing devices to dry hands after washing them. Many children do not like the loud noises of those air-drying machines. Perhaps your "diaper bag/childcare bag" might have some simple noise canceling earbuds for them to wear in noisy situations.

When possible try to arrange for someone to tend the child so you don't have to take him or her to the store if the lighting or noise is bothersome. You can also use calming items such as weighted vests, special sensory chair seat pads, or bouncy bands for their feet while sitting, especially in a setting where they are expected to maintain some quiet behavior and/or focus, such as at church or in the classroom. Schools will often have some of these resources available for children to use at school, but if they don't your own research can benefit not only your own but other children at school when you share this information with them and/or encourage them to obtain such tools. 

Finding Joy in the Journey

 

It is so easy to feel frustrated, embarrassed or just plain tired trying to manage all these things. If we approach these situations like puzzles to solve to help a child be able to cope with a world that is more difficult for them in some ways than other children, then we can also strengthen our feeling of love for our child and our ability to cope and understand where they are coming from. This approach is helpful to you also, as it makes these situations less "stressful" and more of an intriguing mystery to solve. Be sure to remind yourself of every successful event or encounter you have when you have used strategies to help your child be better able to manage their difficult situations. Remember, they are counting on you to teach and show them how to cope and strategies to use, so they can gradually learn to use the methods they have seen you (or others) use.

picture of family smiling and talking in kitchen
Focus on and remember the good, positive moments.

You Are Enough!

 

What we mean is that you are capable of learning how to work with your child in a productive, constructive, and mind-growth way. The courses we have here at FamilyWholeness.org will also help you strengthen the abilities you have and acquire additional skills to use in difficult moments. We truly believe that even though we cannot remove difficulties from our lives or our children's lives, we can definitely learn ways to adapt so we can remain or enter a loving, understanding mindset, and even flourish in our relationships.

We've got your back! Come learn with us!

The Family Wholeness Team