When your kid has special needs, it's not long before you are looking hard for your "village". You quickly realize that you cannot do it alone - physically, mentally, emotionally...even spiritually. It's just not possible. There are too many unknowns and nuances to juggle. You'd have to live on island of denial to think you could handle it all by yourself.
Because I know, I can't.
When we first realized that Silas was different, I was a wreck. I was not the "we will get on with it" kind of mother. I was in mourning. I mourned the kid I thought I was going to raise. I needed my friends to:
1) Listen + Speak Hope.
They listened to me share my fears and cry my tears... a lot. My friends were very good at not saying things like "I don't know why you are so upset. It could be so much worse..." My friends possessed a graciousness that I was in desperate need of - a safe space to fall apart. While I was on the floor of my despair they would gently but directly speak words of hope: "Noelle, Silas is fabulous and his story is going to be fabulous."
As we journeyed on with our son's development, there were a lot unique challenges along the way. Silas is "behind" his typically developing peers. This hasn't always been easy to watch. I always found children's birthday parties to be particularly difficult for me. It was tempting to compare our son with the other children who were his age. I needed my friends to :
2) Celebrate our Child's Unique Progress + Speak Hope.
With every milestone, our son was enthusiastically celebrated by the friends around us. Our friends became "fans of Silas". They not only cheered him on but they continued to speak hope towards his future. I remember one friend commenting to me about how Silas showed compassion towards her baby who was crying, "Silas is so good with people he knows are more vulnerable and helpless than him. I can see him being a great man of compassion who does a lot of good in this world." I have never forgotten her words and every time Silas stops to speak to a little baby, I think about his compassionate nature and my friend's words of hope towards his future.
When your child has special needs, there are parts of the journey that are painful - even infuriating. There are moments where you might even want to kick someone's teeth in. During these times I needed my friends to:
3) Get Angry With Me + Speak Hope.
When you are parent of child with special needs you can feel a little crazy at times. It can feel like you are the only one who cares. It's painful to see your kid get left out of the social circle that they would have been in had they been "typical". It's infuriating to be in an IEP meeting where you are getting a lot lip service but not a lot of progress is being made. It makes you mad. It makes me mad but one of the most encouraging words I could hear in those moments is a friend saying,
"I'm mad too."
I can't explain why - but it helps to know that I not the only one who is angry. I remember once Silas was made fun of by a group of boys. I remember being so angry that tears will spilling out from my eyes when I told the story to a friend. My friend said to me, "May all those little boys lose their hair prematurely!" I laughed so hard in that moment but knowing my friend was mad too helped ease the sting of it. She then took me by the hand and said, "Silas is going to be a person who understands what it's like to be misunderstood and because of that - he will have many friends." Hearing her words of hope made me less anxious for his future. In fact, I was hopeful.
The greatest gift my friends have given me, as a mother of a child with special needs, is the gift of hope. As they have hoped...spoke words of hope - it has sparked me to hold onto hope too.