Early Intervention

I recently started a journal where I write a letter to each of my boys. It has been a way for me to document their struggles and mine and makes me feel like someday when they are older they might read it and understand some of my parenting struggles and learn from them. I have been reluctant to blog lately, because things are going so well. I felt as if it was wrong to flaunt our achievements with Hudson in the face of so many others who might be struggling. I was reminded of the reasons I started this group with
Lindsay. I just wanted to hear some hope. If anything, our story is a story of the importance of early intervention. We have participated in family therapy from the beginning, therapy preschool, speech, OT, Play Therapy, Social Skills, Yoga, U-FIT, Pingree Soccer Clinic, Special Ed. pre-school, Dance, and now skiing. Intervention byany means possible is vital to your special needs child’s success. This is a letter I wrote to Hudson today.

Saturday, February 2, 2013
Dear Hudson,
You are so amazing! Me and your Dad have worked so hard since you were diagnosed with Autism in October of 2010. It is now the beginning of 2013 and while you still continue to struggle with some things, you continually surprise me with your love of life, your joy, your humor and your drive. I decided early on that my job was to stretch you - not unlike Ray Charles’ mother depicted in the movie “Ray,” who made it her mission to teach her son how to take care of himself and survive in the world despite his disability. Not unlike Temple Grandin’s mother who did not cower to the restraints that Autism placed on her daughter. She took it on as her mission to celebrate her daughter’s unique vision and teach her how to interact with the world and survive despite being a
woman and a person with Autism. As parents, I believe it is our duty to recognize interests or strengths in our children and expose you to those things, so that you can truly find a passion and a direction in life that you love.
When you were first diagnosed, I cried forever about all the things that I thought you were never going to do. I thought you were never going to have “normal” play-dates with friends. That you would never dance or play sports with all of your sensory issues. I cried because I thought you would never interact with a teacher and give enough of your attention to learn and I cried because I thought you would never communicate without aggression. I cried about all the birthdays and holidays we would have to downplay because it was too much for you. Not surprisingly, crying about it does not get you very far.
As of today - February 2, 2013, I am proud to say that you have had birthday parties with friends. You now love Christmas and Santa. You have participated in a soccer clinic and sports and you love watching football. You are now in a public school regular education classroom with over 15 students. You have had 3 play-dates with a “regular” kid from your class. You are enrolled in “Hip Hop” Dance class - that you love! You talk about your feelings when you get mad. You have had 3 ski lessons despite your sensory issues and you are skiing!! That truly is a miracle. You are not a quitter.
I thank God, that I am also not a quitter. Me and your Dad know you are going to do great things, with great love and passion for life.
Love, Mom

Trying to move forward

How can I get through one more thing? I am a whimp!

We decided to focus on getting more physically fit as a family this summer. My son was charting our progress for a merit badge. I noticed he was getting really fatigued and that he was not progressing even though we worked out every day. So when we went in for his Jr. High physical with our family doctor I mentioned it. He did some simple tests and then referred us up to Primary Children's to meet with a neurologist. We met, they did more tests and then sent us to meet with a neuromuscular specialist. This specialist has determined that my son has some major muscle issues that will take many more tests to hopefully diagnose. They are concerned that since his heart is a muscle and every muscle they have tested is affected that there could be issues with his heart as well.
This news has devastated me! I feel like I was just getting to understand how to help my son. He has ADHD, Anxiety, OCD and sensory issues. Now we have a whole new set of issues. I spent most of the month in the fetal position crying and mourning all that could be lost. I try to tell myself that it may be just find and there is nothing to worry about. Deep down I fear there is something horrible wrong. They have said that he may be in a wheel chair by the time he is 30. I feel so sad that he will have suffer with all the emotional baggage, but that he will also have physical disabilities too. As a parent there is no greater pain that I have had than watching my children suffer.
I know that I cannot live like this forever and it's not fair to my other children to let this disable me. I need to be here mentally not just physically. I started to notice my kids acting out because they needed me. So I have been going to counseling, and I do energy work. I am trying to build courage and face this head on. I feel frustrated that there is so little I can do until we know what we are dealing with.

I console myself by realizing there is a lot worse out there and I am lucky. He doesn't have cancer. He is happy and has a really good life. Here is the truth though. It is still HARD! This is my baby and I HATE that he has this trial.

I realize bad things happen to good people. If you look every family has something that is hard that they are dealing with.  I know that we will come to understand and work with the limitations and obstacles that his new issue brings in our lives. We will have peace and joy in our lives again.  I will just keep moving putting one foot in front of the other!

I am so grateful for a good support group. I know you understand the feelings that even words can't seem to express correctly. Thank You for sharing on FB, the blog, and in meetings. You have helped me so very much.

Thanks Friends
Chrissy Young