You are the expert on your child. 

The first step in finding your way through the system is to learn to trust your gut – those instincts you have about your child.  You may have to overcome feelings of blame and guilt.  You may even feel that you are working around the advice of others who are also familiar with your child.  But, the important thing is to concentrate on your strengths of knowing your child better than anyone else at the table - you know your child and your family.

After you listen to the professionals it becomes your decision about whether their recommendation(s) fit you and your family. 

For example, if a new treatment is suggested then it's up to you to decide if it:

• aligns with your values,
• is manageable given your situation (transportation, time of day, child care needs, etc...),
• is affordable (if it isn't covered under your insurance or service provider), etc...

Then, it becomes your responsibility to communicate your concerns or issues so they can be worked out together with your provider or other professionals.

While you are learning to trust your gut, you might find it helpful to talk to a friend or group who can listen to you and give you honest feedback about what you’re thinking and feeling.  It can be difficult to know whether how you are feeling is based on legitimate concerns ("this really goes against my beliefs" or "we've already done what they're suggesting and the side effects were aweful; how is it going to be different this time?") or is how you are feeling rooted in your own fears, bias or the unknown.

In either case, it is important to listen to yourself so you can identify your concerns and issues because once you can identify what you are feeling and thinking then you can communicate them and get some answers or support.

Reaching out can help bolster you when you need support and provide some company while you’re navigating the system which can become a maze pretty quickly.  This person or group might also help relieve some of the feelings of isolation that come from having a child with challenges.