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Newly Diagnosed
Welcome to Atypical Toddler
I'd like to share my story with you. Eight months after my son was born, after a heart
murmur and a sickle cell trait diagnosis my doctor questioned me after our last round of
testing. While holding my son in her lap she looked at me and asked” What do you think
it says?” I felt like this was some sort of poetic set up that I wasn’t ready for. I said, “I
don’t know”. She looked at me sadly, almost sympathetically and advised me that my son
had Down syndrome. In the next two seconds I felt my world crumbling beneath me; I
begin to become angry and sad all at the same time. I started feeling pity for myself and
sorry for my son. At that moment of pity for my son I stopped myself. I picked up what
dignity I had for the both of us and mandated myself to never feel this way again. Pity
AND self worth starts at home and I was determined to give my son a better start. I
would not be the initiator or advocate for self pity. He would know he was worth
something more than he could ever imagine and no one – not even I- would be able to
take that from him.
I am now here to hold your hand through an intricate journey. You are not alone. There are a community of us waiting to guide you through the paths we have already taken. i would like to take some of the pressure of "knowing what to do" off of you. My gaol is to make this transition as easy as possible. With that said, I am clear that my journey is singular to me. Every person and family will resooind differently to diagnosis. What matters the most is that YOU ARE NOT ALONE.
I do belive that there needs to be space for a grieving process. There are many ways we thought or many things we wanted that may not be different with new information. With that said, I would like to introduce you to the 7 stages of grief that you may encounter. And it is perfectly fine to go through then multiple times. Be easy with yoursellf.
5 Stages of Grief
When you first start talking about having children you dream about your life as a parent. A lot of the dreams incorporate sharing your passions with this child. This could include playing sports, an instrument, learning to draw or paint and many other of life’s passions. When learning your child has special needs the loss of this dream will trigger strong emotions. These emotions are similar to learning about any of life’s losses and will require the person to go through the five stages of grief.
Stage 1: Denial Denial is the worst stage for a child with special needs. Early intervention is critical and if a parent is unwilling to believe they have a child with special needs crucial time is lost. Some parents never get out of this stage and the only one that loses is that poor child. It is a parent’s job to be their child’s advocate and that can’t happen until they come to terms with the disability.
Stage 2: Anger Once in the second stage, the parents recognize that denial cannot continue. In this stage the child starts getting the crucial help they need but often times the parents alienate themselves from their friends, family and often times each other. During this stage there are many stresses on the marriage and sometimes this anger will lead to divorce. The parents need to get past this anger while creating a strong support network. If the parents stick together often times their bond will become stronger and the marriage will flourish.
Stage 3: Bargaining The third stage involves the hope that the parents can somehow cure their child. Usually, this involves prayer to a higher power, “Just let my child be like other children and I will do whatever you want”. What the parents need to learn is the joys of being special. Every child has unique abilities and skills. Through therapies, practice and trial and error you will find what makes your child special. My son has a bigger heart then anyone I have ever met and continues to amaze me with his generosity every day. Denial Shock Grief
Stage 4: Depression
During the fourth stage, the parents start to blame themselves. They think they did something to cause their child to have a disability. Instead of blaming the world and each other they blame themselves. Trying to cheer someone up in this stage is very hard. Common sense is thrown out the window. The individual needs to realize on their own that they are not to blame. Stage 5: Acceptance In this last stage, parents can start to dream again. They buckle down and do the hard work it takes to raise a special needs child but now they also see the beauty in it. They see their child as they are and not defined by their preconceived ideas. This child has talents and abilities far beyond what they ever imagined. While they might struggle at social interaction or sports they might flourish somewhere else. My son’s brain works in pictures and has become my personal navigation system in the car. He directs me through the city with an ease I still don’t have myself. He also has become a great swimmer. While he was not able to keep up in traditional team sports in the water he has the advantage. Also, unlike many of life’s losses raising a child with special needs is an ongoing commitment. It would not be unusual to run through these stages more than once as life happens!! This doesn’t mean you are a horrible parent it means you are a human being.
Stage 5: Acceptance
In this last stage, parents can start to dream again. They buckle down and do the hard work it takes to raise a special needs child but now they also see the beauty in it. They see their child as they are and not defined by their preconceived ideas. This child has talents and abilities far beyond what they ever imagined. While they might struggle at social interaction or sports they might flourish somewhere else. My son’s brain works in pictures and has become my personal navigation system in the car. He directs me through the city with an ease I still don’t have myself. He also has become a great swimmer. While he was not able to keep up in traditional team sports in the water he has the advantage. Also, unlike many of life’s losses raising a child with special needs is an ongoing commitment. It would not be unusual to run through these stages more than once as life happens!! This doesn’t mean you are a horrible parent it means you are a human being.
By Doug Goldberg Special Education Advisor Blog
Must Haves/Essentials for your new journey :
1. Early Intervention
2. Care Coordination
3. Respite
4. Medicaid Waiver
5. Residential Habilitation
(Please click on the step by step tab for further guidance)