It's funny...here I am the woman who always has an opinion and a loud voice to carry it forward and I find myself strangely without words. I had so many thoughts and ideas about what I wanted to say in this blog and yet I find my thoughts hijacked. By a case...by a child...by what I feel is a travesty.
For one moment I just want to say a few words about my feelings on the Casey Anthony verdict and then I promise to devote this post to the issue I came here to write about...raising a child with PDD NOS.
I didn't follow the trial. I didn't want to cater to the way the media sensationalizes the heartbreak of others. I could see that the murder charges would be hard to stick due to evidence that some could find lacking. But the idea that she was found not guilty of the child neglect charges breaks my heart. If my daughter is out of my sight for a moment my world stops. How anyone could not report their daughter missing and party all the while is beyond comprehension. I, along with millions, mourn the loss of justice for a little girl to a flaw in the system. I hope people will go to http://www.change.org and sign the Caylee's Law petition.
Ok having gotten that off my chest lets start with some thoughts that popped into my head about what I have learned so far in this journey of raising a daughter with PDD NOS.
The reason I began this blog is that I feel that families with high functioning PDD NOS children are in a sort of limbo. I belong to Autism related forums and I feel almost guilty posting about what I feel are my child's issues when I read a post about a non verbal 8 year old. But when I walk through the mall with my daughter and see a child talking away at a similar age to my girl I realize I feel a longing for that. So where do I turn? I believe I am only one of many who feel this way.
If you have heard the letters PDD NOS for your child you know that it basically means a child shows some autistic tendencies but is atypical in other ways. Some children learn strategies to cope with these issues and lose their label along the way, at least officially. Others stay labeled the same while others are moved to different areas of the autistic spectrum. No matter how early you see the warning signs or how much EI you get there are no guarantees as to what will happen as your child gets older. Statistically speaking, the odds for positive outcomes in regards to any interventions your child receives tend to increase the earlier you seek them out.
If you haven't heard of PDD NOS or knew very little about it before don't feel bad...I am a special education teacher and my knowledge of this area of the spectrum was pretty limited. Until my baby was diagnosed at 15 months that is. Then my husband and I became Internet experts on the subject within hours.
That takes me to my first thought on this whole journey... be aware of all the facts and theories of your child's diagnosis but don't become a slave to your computer. I learned this the hard way. I am trying hard to wean myself away from over analyzing every movement and look my baby has. Sometimes reading all the info you can find helps. I found that when you let it overcome you...overwhelm the sense of fun and love you have for your child it becomes a dangerous road. I cried more as I read more. I laughed less. And in the end my daughter lost a part of me for a while. I am ashamed to admit that. I didn't know how to handle the fact that my little girl would have so many issues to face in her life now. Issues I had seen in other children...never thinking it would touch her life as well. All the research would help me cope...or so I thought. The truth is, the research isn't helping me anymore. If anything it is driving me to distraction. In the end I am a mom to a little angel. So I had to "X" out of the sites and spend more time playing with my baby girl.
Next don't be afraid to mourn the loss of "normalcy". No parent should feel ashamed for being depressed or angry about the fact your life changed in many ways with 6 letters. Some people try to tell me my life has not "really" changed. But it has. Starting next week my days will be filled with ABA sessions and speech therapy for my daughter. My schedule will revolve around hers even more than before. There are moments where I look to the heavens and ask...why her? I know I will never get an answer. But these thoughts led me to the one I hope to leave you with today... gratitude.
My daughter is highly functioning. During her evaluations one therapist said she had fantastic eye contact and social skills. She caught Ava on a great day. But the fact is Ava has those great days! There are days where she seems so close to where she should be. I think that makes the days where she ignores me harder somehow but I never lose that hope that tomorrow will be another of those great days. She is extremely intelligent...and that isn't just a mommy's bias. The psychiatrist who evaluated her reminded me that her intelligence and natural curiosity will help her immensely on this journey. She loves to cuddle when she is in the mood. There are some children with her diagnosis who don't show that emotion very often. I began to see those points of light when dark feelings started circling me. We all have those points of light. Each child has a joy that they bring to our lives. And when we hurt for them...with them..we need to seek that light out.
In the end we, as parents, owe it to our kids to be grateful for the good that we have no matter what challenges come our way. I feel better now that I stopped "researching" the miracle cures. I refused to let myself get caught up in the vaccination debates. I realized that the best way, for me that is, to help my girl was to start living life with her again and fighting each day to get every spark of language and connection I can from her. I am so lucky to have a husband who noticed the day to day issues she faced while I was at work. I am lucky to be educated and work as a teacher for students with special needs. I am grateful to have this knowledge which has helped me along this road. I walked into my IFSP meeting armed with what I needed to get the maximum amounts of ABA intervention and speech therapy. That meeting is where I will start off with the next time I write to you...
For now take my advice. X out of my blog and go play with your little one :) Let your fear subside for a while so you can enjoy that play. It's what I plan to do after she and I eat!
Thank you for sharing that Linda. I can not know what you must be going through or the difficulties that lie ahead, but I do know that you are a strong wonderful woman that will give that little girl the best opportunities and love possible, that any child would be jealous of. If you ever need anything we are a phone call away.
ReplyDeleteXhev~
As someone who struggles with chronic illness, I also worry about the ramifications of my disease on a child. It's not the same... but, I'm grateful for your words, your truth and your experience. I think Ava is very lucky to have a mommy like you. And, thank you again for bringing your heart to the page.
ReplyDeleteThank you so much for sharing. I am going through the same thing with my son. I did the same things you and your husband did. In the end he was and still is the same little boy he was before he was diagnosed. If you ever need to talk, you know where to find me.
ReplyDeleteErin