Be Gentle

I stole the title for this entry from my friend's blog;  it completely embodies what this one is about.  Having a child with or without special needs can be seen as overwhelming and very stressful if you lack the proper information and supports.  If you or your family have a history of things such as depression and anxiety, you are particularly at risk.  Who we are at the start of this journey will dictate how we as parents react to things as they come up;  negativity can affect every member of the family.  I have seen it over and over again with my Mental Health patients and their families.  Burnout is a scary reality when you perceive yourself to be alone and helpless.  It doesn't have to be this way however;  there are specific things that you can do to help alleviate your stress.

There is a fantastic online book by Sue Buckley called Issues for families with children with Down syndrome.  It is a great read as helps the user define how the family unit itself works, what challenges will intercept it and what can be done to maintain a happy life for all.  In the chapter "Positive strategies for families", she outlines a series of basic strategies to address caregiver and family stress.  I've paraphrased and added a few things a bit to suit my own needs, but you can find the original here. 

1)  Identify strengths and weaknesses [Know your limits!]

• Look for resources and support. [Support can be emotional or friendship oriented, for advice, for information, for advocacy or include professional services.  Could be from family, friends, the community and parent support groups.]
• Take control and become an informed consumer. [Learn what is best to meet your families needs as a whole both with time and energy.  Learn to say no, learn to reschedule, learn to be in charge]
  

2)  Parents need to look after each other and their own health [Be gentle!]

• Focus on the whole family and a happy family life.  [All family members and the family band are important.  Family life, goals, etc should not be totally disrupted to accommodate one person in particular]
• Establish settled routines for your child and encourage good behaviour. [This includes therapy sessions, appointments,etc., which can interfere with attempts to establish good routines]
• Make full use of community and neighborhood support [It is worth the time to assess family, friends, the neighborhood and the community for the availability of emotional or practical support for you, your child or the rest of your family.  New programs or situations may have made something that once seemed impossible, now plausible.]
• Make full use of services and professional support [Resources are regional.  Find out what is available to help you emotionally and financially.  Work with your professionals to achieve what is best for you and your family]
• Belong to a local parent support network [Parent groups offer a variety of support from emotional to practical to advocacy.  It is helpful to talk to others with shared experience]
• Make use of advocacy support when battling for services [Parents groups can be strong voices in changing regional policies or availability of services]

3)  Identify any child factors that cause stress and seek help in resolving them [Seek help!]

• Use respite care to take a break and to reduce restrictions on family activities. [You cannot accomplish these things if you are tired or burned out from any number of factors.  Rest or spend quality time with other family members]
• Resolve to change or reduce difficult behaviors [Behavior modification of one's own reactions to stress and developing more understanding of your child and their needs can provide relief for the whole family.  This may require professional intervention, yet it is worth it for the sake of the whole family unit]

(Copyright © 1996-2011 Down Syndrome Education International). 

I can't say that I have mastered all of these points, but I have found it a very useful framework.  Know your limits, be gentle to yourself and seek help when and where you need it.  It will take time to establish routines, to set up resources and supports but it will be truly worth it.  Educating yourself is one of the best things that you can do as a parent, whether you have a child with a disability like Down syndrome or not.  If you have found yourself having difficulty, re-evaluate.  Get your supports in place, get your routines established.  Once you know the path you and your family will take, you will feel like you will be able to breathe again.