When a couple learns they are going to have a baby, most being to picture their new world with this perfect baby. All to often, during the pregnancy or for some during their early years in life, parents learn that “perfect” baby is not is not “perfect” after all. More and more parents are discovering their baby has a “disability” this is a word I am not fond of yet it covers such a large area of things from physical disabilities to learning and for other sensory.
Lately we hear a lot about children living on “The Spectrum” and it can range from a child with high abilities but lost in an overly stimulating social world to a lower functioning child on the opposite end of the spectrum with physical as well as social emotional demands that need to be addressed on day to day need.
When parents are told their child has a disability they will experience 6 different levels of grief and this if very normal. As a parent, I too when through these stages and feel the need to share with you today as a means to help people understand, the word grief is there because you are grieving the loss of that “perfect baby” you though you had, when in fact, your baby is still perfect, you just need to learn to live in their world and stop trying to impose them to live in ours.
The first stage is SHOCK- this is normal and we all experience shock when we learn of “bad”news. I put bad in quote because to me this is far from bad new but just the opposite. You now know why you are having difficulties reaching your child so if anything it is great news so now you know you can help your child.
Stage two is DENIAL- most parents get stuck in this stage, but I did nothing wrong, or they just don’t see what I see. The reality is you did nothing wrong. As parents we need to accept not all children come into this world the same as we are and again this is why you need to accept the reality of our child having special needs and learn to live in their world.
The third stage is Anger, and it is big one. In the anger stage, you are angry at everyone, the doctors for telling you, the school for “pushing you” to get your child evaluated and at your partner as well playing the blame game. It is in this stage many couples relationships are redefined as either coming together to help their child or falling apart because they are stuck in this stage.
The forth stage is SHAME, GUILT and HELPLESSNESS-in this stage many parents sink into a stage of depression. How do I take my child out in public, people will think I am a bad parent, I can’t control my kid. These are just some of the feelings parents experience in this stage. If parents do no learn to ask for help they can never move beyond it. There are many organizations parents can turn to for help in helping their child. A parent should NEVER feel shame because their child has a disability but pride in knowing not everyone is cut out to have the gift of a special needs child. (something I truly believe)
The fifth stage is ACCEPTANCE. When parents reach this stage something magical happens, the healing process is begin. This is the time when parents have made important choice to help their child and are starting to see changes in their world and with their child by accepting the reality and learning how to live in their child’s world.
After parents reach the acceptance stage the last one is MOVING FORWARD. Once a family is able to move forward and begin to see all the amazing possibilities their child possesses thing begin to come together for everyone. For many reaching this stage is very hard and can take years. When everyone, the family and intervention team (child study team) are all working on the same page great things begin to happen.
As a parent of a child living on the spectrum and a special education teacher I can honestly tell you, once you are ready to move forward you begin to learn your child is amazing in their own unique way as is every child. It becomes our job to help our children shine and find their way in this world. We need to be there for them to help them see they can do anything and we need to teach them to problem solve when they face new challenges.
The funny part to this whole topic of grief is, do you see yourself as special, face the fact no one is perfect we all have our little quirks about us that makes us “special” so what is the difference if some doctor has given your child a “label” it is just that, the same way you gave your child a name, your child has a gender, are these not labels as well? So please understand learning your child has special needs please accept it as just that, there is a special way to help your child be amazing in this world. Live in your child’s world and see how great it is. If you feel I need address more of this or you have questions, please post them and I will reply. PEACE…