|Isaac's curly's Oh how I miss them|
|Caleb's curly's and beautiful smile :)|
A new saying I've been seeing all over Facebook this week is this:
There's a new cure for Down Syndrome, its called ACCEPTANCE.
What a catchy saying, this will probably show up on t-shirts all over the world now. Its such a true statement, but I think the only way there is going to be acceptance is if people are more educated. This is what I am hoping to do with my blog, to educate people. To let people into our lives to see that there are difficult times, there are joys like no other, and there is our version of normal that we hope to share with others.
So many of the things that I would classify as "difficult" are medical issues that I did not have to endure with my three older children. Understanding diagnosis's that seem to keep coming each year. Down Syndrome, GERD, Asthma, PDD Autism-NOS, Sensory Integration Dysfunction, Hypothyroidism. In five short years I have developed quite a knowledge of issues that I never even heard about from friends or family members who had children before I did. "Difficult" is trying not to treat your child any different than you did your typical children, but realizing that they do not comprehend things as well as the other children did at their age. "Difficult" is learning to be patient and accept that Caleb and Isaac will do what they are ready to do ~ when THEY are ready to do it, not when mom is ready for them to do it. It will come, but in their own time. "Difficult" is trying to explain what is Down Syndrome and/or what is Autism in my children, when I am still learning all of this myself. "Difficult" is not being able to think to far in the future without getting fearing the world mistreating or making fun of my beautiful baby boys. "Difficult" is trying so hard to stay positive when things seem to get more and more difficult the older they get.
Joys like no other.. the boys are total joy. Joy in my heart that I didn't know that I could possibly have. Joy in seeing the little things in life matter much much more than they did with my older three typical children. Joy in knowing that we will celebrate childhood even longer with my boys. Joy that we were one of the chosen to raise these beautiful children. Joy that I have laid more on God and he has comforted me and pulled me through some difficult times by providing me with the best family support and the most wonderful friends anyone could ask for. Joy that Down Syndrome is not scary to me anymore. Joy that I have been given the opportunity to serve my local community by being the Executive Director of The Arc of Jefferson County. Joy that I am so very blessed beyond any words I might express on here.
Our version on normal has put many miles on the van lately. Here is an example of the boys week.
Monday: 9am to noon - Stepping Stones (preschool for children with Autism)
12:15 to 2:45 - IU preschool
Tuesday: Speech and Occupational Therapy, an hour session with a 1/2 hour drive each way.
Wednesday: 9am to noon - Stepping Stones Preschool again
Thursday: usually filled with running errands, doctors appointments, etc.
Friday: Speech and Occupational Therapy again
I may be a stay at home mom, but I sure have a good part-time job just running the boys everywhere they need to be. Its been stressful, but when I sit back and go over progress notes with their providers its totally worth it to me to do this for them while I can. When they start school, most of their services will be offered in the school setting and will hopefully cut down on all of my running.
So I will leave with this definition of acceptance:
Acceptance is when a person agrees to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit.
ALL people with Down Syndrome have the exact same feelings as you and I do. They want friends, they want laughter, they want love. They need Y-O-U to make that happen.