Uncategorized

Parents of Autistic Children: The Importance of Making Connections With The Special Needs Community

Often it is difficult for people to connect with others who are experiencing a life similar to yours.

I hope that by connecting you will less alone and isolated. Parents of children with special needs are often neglected with regards to self care. We forget to take care of ourselves. I believe that when we share our experiences with another person whose life is similar, hope spreads. In my experience, if I am not connecting, I fall apart. For me, it is an absolute necessity to connect with others. I need to know that others feel the way I feel. Otherwise, I feel isolated and become depressed.

I have 3 amazing sons. My oldest is a typical teenager and my younger two have Autism.

I know that you will all be at different places along this life long Autism journey. Some of you may have just started on this path. Others may be many years in. I have eleven years under my belt. I feel like I’m at a place where I feel my head is mostly above water. This, I am grateful for. I have perspective. Now it is a little easier for me to find hope because I have witnessed how far my children have grown. They have overcome many of the challenges that come with Autism. I have seen myself overcome challenges that come with being a parent of children with Autism. But I am realistic. I understand that bumps will always present themselves; some more difficult than others.

I remember when I started this path, I was terrified. I felt that I had been thrown out of space ship and I was just floating through out space not knowing which way was up. One of the many things I had wished for when I was told my sons had Autism, was a prescription for a set of moms, or parents who had many years experience in the world of Autism. These moms could be my crystal ball. They could tell me that everything will work out if you just trust yourself, find support networks, and hold onto hope. But I was too busy drowning. It was difficult to seek out help for me when I was busy trying to figure out how to help my children.

As a mother, I have overcome so much so far during this journey, but I know I still have much too learn. That will come with experience. But those raw emotions – the fear, the anger, the heartache, the grief- that show up after your child is diagnosed- they dissipate over time. I can not promise it will happen for you, but I can tell you it is possible, because it happened for me. Do these difficult emotions show up periodically? Yes, absolutely. But coping gets easier.

So, for now, I hope that by sharing the experiences I have had raising a very neuro-diverse family, it may help you to know that you are not alone.  Connection is the key to help from isolating.

connectingparents2

Uncategorized

More About The Importance of Connections

Connection is a key ingredient to raising children on the spectrum. As Brene Brown, renowned Author, has said:

“Connection is the energy that is created between people when they feel seen, heard and valued- when they can give and receive without judgement.”

2006 is around the time I entered the world of autism scared out of my mind.  I was beyond terrified. Rarely did a day pass when I did not have raging anxiety or fear. A memory that is seared into my brain was the day my youngest son was diagnosed with Autism. I will never forget walking out of the doctor’s office holding a million forms and a prescription for Fragile-X Syndrome test. What was missing was a parent to parent support group prescription. I did not realize how much I would need peer to peer support. I had no idea how to raise 3 children, 2 of whom had Autism. I feared for the future. I needed a crystal ball to know my sons would be ok! I felt depressed, alone, and isolated. What I desperately longed for was connection with other moms who had the same amount or more experience in the autism world. I was “green.” I needed an expert level mom! Additionally , at the time I was having babies, social media had not been born.

I am sure those of you who raise an autistic child have had the awful experience of judging looks when your child is having a meltdown in public, making “strange” faces or is twirling while wearing noise cancellation headphones in response to sensory overload. I have been there countless times with both of my Autistic sons. Strangers only see disruptive or strange behavior, they cannot see the “why”. They do not understand. They are unaware of how much you are struggling as a parent, trying to figure out where the meltdown is coming from, how to ease the sensory overload, and how to calm your child.

When my middle son started his special needs pre-K program, I finally began to develop a network of mom friends living a similar life. It was a relief for me when I found these connections. They understood what I was experiencing and why my children were they way they were. I didn’t have to explain. We could just “be” when got together for playdates. We grew to trust each other and be supportive during tough times. We could genuinely celebrate the accomplishments of each other’s children. We never felt judged, because we walk in the same shoes. These mothers became my parenting community that I so desperately needed in the beginning. These connections have made the past eleven years much easier and not so frightening.

I am so grateful for my ever-growing mom/parent community. This community has helped me to get to a place in my life that offers the perspective I wished I had early on. It is perspective fueled with hope and confidence. It has given me the ability to cope with problems.

I look back at a life that I thought would be 100% impossible and see that it was not the case. We have made it through many heartaches. We have witnessed our children overcoming challenges. We see them enduring. We see them enjoying life in their own unique way. A life I thought would be hopeless, has been a world filled with beauty and growth. We have climbed the steepest mountains – sometimes successfully arriving at the top, and sometimes falling back down. I will be honest, I have had my share of tears. But my tears are not just from sadness. Gratitude tears come in abundance. Also, I have learned that projecting into the future is a waste of time. Instead, I parent one day at time. When I do that way, I find tomorrow is easier.

I have overcome and learned so much during this journey so far, but I know I still have A ways to go. What is different today, is that I am not always afraid. I will not let fear dictate my parenting. I trust when I stay connected to my peers, this journey will be easier, and my children will ultimately benefit the most.