Princess Ky Background - The cutest blog on the block

Sunday, July 10, 2011

Things learned are meant to be shared...

She wanted to be alone - to think things out - 
to adjust herself, if it were possible, to the new world in which she seemed to have been transplanted with a suddenness and completeness that left her half bewildered to her own identity.
— L.M. Montgomery (Rilla of Ingleside)
The day that our Kylie was diagnosed with Autism is forever etched in my mind. How I wish that someone who had walked this path before had been there to hold my hand and guide me through the overwhelming amounts of information, well intentioned (but many times misinformed) people, resources and decisions I needed to make.

I am generally very educated, tech savvy, book read, and full of life experience, but I never felt more stupid and unprepared in the moments after we left that doctor's office. I didn't even know in what direction to head.

They had handed us this lead weighted piece of information and we were forced to carry it because we didn't know what else to do. My heart was so heavy and even though my husband and Heavenly Father were with me, I felt so alone.

Immediately after leaving the office, we went directly to Barnes and Noble (we were 2 hours from home) and I bought books about Autism that I could read on the drive home (because, of course, in two hours, I would be expert on it all and be ready to tackle the world- ha!)

...As a veteran mom in the world of special needs, I chuckle now at the swell and suffocation of panic I felt in those moments. But I assure you, on that day, it was not the slightest bit humorous.

I wish that with the diagnosis, we would have also been given a Maya Angelou type personality who would have sat with us- relaxed, quiet and peaceful. If she did talk, it would have been in a slow, deep, confident and comforting voice. The kind of person who would have gathered me in her arms and whispered it was ok to cry and that things would be alright. She would have given me a tissue, held my hand and quietly stroked my back till my sniffles had subsided- until I was ready to face reality (and the world).

Instead, like a shock of cold air, Dan and I learned and navigated on our own (always consulting the ONE who loves our daughter most).

Here are bits and pieces of the wisdom we have come to practice and rely on. If we could go back and do it all again, we would trust this advice...

* Breathe: Take just one minute and breathe. Look at your family - really look at them. Memorize their faces. Dwell on their attributes and the contributions each make to your family. Let it soak in that this group of people will be your closest team mates on this new and exciting journey.

* Be still: Take a few minutes - maybe an evening to just sit in quietness. Think about all the things that you have been told and advised on. Decide how you feel (knowing that what you feel now, will not be the same thing you feel down the road). Allow yourself time (and give yourself permission) to grieve (knowing that other family members may grieve differently than you).

* Connect with your spouse: Talk, read together, make a plan of action together as to how your family will advance on this journey. It is SO IMPORTANT to be united and in harmony where your child is concerned.

* Choose to "experience" the disability vs "have" the disability. This positive attitude makes all the difference in how you support your child and family. People outside (and inside) your home will take their cue from you as to how to approach this new adventure.

* Educate yourself, your spouse and your immediate family: Check out books from your library- you could spend a fortune if you start buying. Utilize the internet, there are so many resources available.

* As a family, decide how you will communicate and educate extended family and friends. For my family, we felt it would be a more streamlined and thorough approach to update everyone at once. So, we chose to begin a free Caring Bridge site. I knew I would not emotionally be able to handle repeating things over and over again. We also view Caring Bridge as a method to teach and educate our extended family and friends about Autism, Special Needs and Sensory Issues so there is more ownership, understanding, accommodation and less probing/personal questions.

* Be prepared for the fact that there will be people around you (and most likely in your own extended family) who will use inappropriate language, ask inappropriate questions and demand more of you than you are able to give. Try to have a gracious response ready in advance so you are not caught off guard. (A good one is: "I know you will understand, but I really would rather keep that information private for Joey. It is his story and I really think he would like to make the decision someday on whether or not he is comfortable sharing those things. I really appreciate your helping me protect Joey, not everyone is so understanding").  Model appropriate behavior especially in using proper and appropriate special needs terminology.

* Be gracious, gracious, gracious!!! Be gracious even when your blood is boiling over something that someone has said or done. Choose appropriate timing as to when sensitive discussions should take place. Never embarrass others - make it your priority to educate them and give them the tools to make right choices. Determine to be the one who reinforces and builds up bridges, not the one who tears them down.

* Look for and investigate supports. There are various supports for therapy, financial resources, education options, Medicaid, anxiety, electronics and etc. Don't try to do it all on your own. Places to start would be your child's doctor, area education agency, the social worker at the place where your child was diagnosed, Medicaid and the Department of Human Services. By FAR, the best resource you will find is other parents. Try joining blogging communities such as and searching for special needs groups or groups related to your situation. Join a support group, ask questions and speak up. Help is there if you will humble yourself and ask.

* Advocate for your child: None of us enjoy this part of the process, but it doesn't always have to be difficult. Work on fostering care teams in your child's school, church, and sport activities. Advocate and help search out funding to accommodate special equipment, activities or other supports your child will need.

* Be approachable. I know way too many families who experience special needs that have drawn a wall between themselves and the general public. None of us want to be hurt, but the best way to foster relationships is to be open and honest with those who are willing to step into our lives. I especially love it when a friend will say "I have no idea what you are going through, but I would really love it if you would teach me about it and tell me ways that I can be there for you and help support your family" - What a GIFT!!

* Find a safe place - whether on paper, to your spouse or best friend where you can vent openly and not damage a relationship. Make sure that if it is a person, it is someone who can help you get out of the funk and back into a positive mindset.

* Take care of yourself. This is an area that I am not proficient in, so I am standing on the platform preaching to the choir. Get enough rest, eat balanced meals, exercise, take a time out when you need to, ask for help, foster social and spiritual relationships. Try to have balance in your life between school, church, therapy, family responsibility and fun.

* Try not to be concerned with what others think (this is also a difficult one for me). If your child needs a safety harness to navigate pedestrian traffic, then use it (even if a woman in Parents Magazine said using a safety harness is lazy parenting. I'd like to see them parent a special needs child for just one day).  Your priority is to your child and family. Do whatever is necessary to meet your child's safety (and other) needs.

* Empower your child by giving them the tools they need to be successful in the community. When speech therapy taught our daughter to say "I want book", we taught her to say "I want book PLEASE." When they transitioned to "Can I have book", we taught her "MAY I have book, PLEASE" (proper grammar and polite/less demanding to casual observers).

* Express Gratitude: Be sure to write thank you notes, or express gratitude verbally to your child's caregivers, teachers and helpers. Praise service providers and other people who have stepped into your life. Provide good, honest and constructive feedback when you are asked to (or when you feel it is necessary), but always balance it with positive and thankful experiences.

* LIVE: Turn off your computer, close the library book, put away the therapy tools and gather your family around you. Make a bucket list of things you would like to experience together or learn about together over the summer. Then DO those things and take pictures. The best way to bond as a family is to have shared experiences. The best way to have others feel connected to your family is to share these things with them (via caring bridge, a blog, a photo album, hearing your stories)... Again... they will take their cue from you and emerge more educated and supportive of your future endeavors.

* Invest in your spouse and your child. Don't allow your lives to focus on the disability. Enjoy each other's company, make memories, find out what each is good at and encourage that area. Really listen and hear what they say, how they feel, and what they think about things.

* LOVE your family: Say it, write it, demonstrate it in your touch. Date your spouse. Date your kids. Express pride (in front of them so they can hear). Meet their needs before they surface, remember special dates, surprise them with the occasional gift or favorite meal.

…I think,' concluded Anne, hitting on a very vital truth,
'that we always love best the people who need us.
— L.M. Montgomery (Anne of Avonlea)

* Rest assured that your life will be as fun, complete and whole as it is supposed to be. Different is better than ordinary if you are willing to embrace it and experience it.

YOU CAN DO IT. God gives each of us the tools, personalities and gifts to navigate these special highways in life. We were chosen for a special purpose and He has a perfect plan for our future.

If anyone reading this has any questions or would like more detailed information as to resources available, I would be happy to answer any questions or give further information. I don't have all the answers but I could point you in the right direction and share with you what has worked for my family.

Some people go through life trying to find out what the world holds for them 
only to find out too late that it's what they bring to the world that really counts.
— L.M. Montgomery (A Stepping Stone Book)