Special mommy lunch; sanity over tomato soup

I have said it so many time that I am a broken record. But since I have your attention, I will say it again. Connecting with other parents of kids with special needs makes all the difference. Not all THE difference. ALL THE DIFFERENCE!

It has taken awhile but I have finally pulled together my special mommy posse and we had lunch together yesterday at a local restaurant.

You know how it goes, its that table over there that will not turn over, been there all afternoon not having desert, talking, talking, talking and getting their glasses filled and refilled with water.

Sounds annoying perhaps but it was so nice and so needed. I recommend it to everyone!

I feel lucky to have found them and spending the afternoon listening to the play by play of each of their stories about their child's IEP meeting reminded me that no matter how isolated we feel, there are others out there feeling the same way.

The trick is finding them.

It took a while. Our kids do not really know each other, being years, grades and genders apart. But we speak the same language. I always learn so much and am fortified and reinforced by them, the stories, the passion and the pain.

We are devoted cheering squads for the good news and, yes, there is always good news. And, we are the dedicated backup fighters quick to take sides strongly with our posse member against all comers. The school district. Teachers that don't get or are too tired/lazy/indifferent to practice inclusion. Parents that shun. Kids that exclude.

All of the above got our well deserved wrath yesterday. Happily, joyously we had the special - perspective and I could probably eat it every single day if it was possible.

Thank you ladies. My feeble words could never completely explain how important that was to me.

Excellent buddy

Shea had a play date on Saturday and obviously since I am bringing it up as news, it must be unusual. I guess it is.

Oh he hangs out with his sister and the neighbor girls but he is the littlest therefore he is a minority of one and not always treated as well as I would hope for him.

I have tried to do playdates but they really are tricky. I have to be honest. Seeing my kid next to a typically developing kid just hurts. Still does. Oh, we do plenty of it anyway but it hard for me to witness.

I have tried making connections with the other special kids in Shea's class with not much luck. Remember; the special kids are picked up and dropped off with door to door service by the fabulous special bus. We happen to live very close to the school so I do a lot of dropping off and picking up but not many special parents do.

I have written about this before. It is easy to just let them be. It is easy to not really be very plugged into the classroom happenings when you aren't there. Believe me, all the other typically developing parents are there. But special parents usually aren't.

So it has been slow going meeting other special parents who would like to connect. That is why I was so thrilled to run into one mom recently. Of course, I met her at Granny's and her eyes lit up when she realized I was another special mommy too.

So we planned a play date at my house last weekend and it was a great success. It made me realize that Shea really needs this and I need to provide it with more regularity.

He was so excited he could barely spit his words out but they got along pretty good. Shea was thrilled to show off his treasures but there was a little bit of scuffling over "stuff". Pretty mild really.

When his mom came to pick up, I am afraid I blabbed her ear off.

I guess we could all use a few more playdates with the right people.

Grief and coping: learning to say good bye to the child you did not have

Whether hoped and prayed for or a big old surprise, each child is a miraculous gift. Each one deserves to be wanted and loved, needs stability, kindness and understanding.

Never are we more human or dare I say mammal as when we give birth. Strong instincts takes over as we perhaps blindly rush into the life long adventure of parenting. This is not only true for birth parents; adoptive parents go through all this too and should not be excluded.

We all know how this story is supposed to go. Your darling baby boy or girl, in every way perfect, growing up, changing, developing, eventually not needing you so much, becoming strong, independent, happy people.

When we first realize that our darling bundle is different and has special needs, we are understandably terrified. Mourning that child you did not have is a necessary part of acceptance. Is it the most gut wrenching situation for a parent? Perhaps. It certainly is right up there.

The first realization is the worst and questions abound. “Will he ever be “normal”? Will we be able to mainstream him in school? Will he be teased? Will he have friendsl? Will he ever go to college, get married, have kids?” These thoughts and so many more rocket through your noggin at a dizzying pace.

Despair can set in; suddenly the sky isn’t so blue and the trees are just not as green. There is a pall over your world and family and honestly there is not much to be done. It is hard on marriages and siblings. There is a lot of self blame and guilt. Finances, patience and emotions are stretched. Depression is common.

Grieving for this child you did not have is understandable and probably just needs to happen to run its course. Although, it can last a long time. Each time you see your child next to a typically developing peer, the reality bites you hard. Another wave of grief fogs your stockpiled hope and gathered optimism. Bouncing back from that is a learned thing, only getting easier with time.

I wish I knew how to make it easier. Unfortunately, its just plain old not easy. But, we can try to be pragmatic if not completely optimistic. We can learn to be dedicated despite our fear. We can teach acceptance and tolerance to our families and our communities. We can do what ever we need to do to make our special child’s future as bright as possible and be thankful for what we have.

We can also forgive ourselves and our fate. We can learn from the challenges and revel in these uniquely beautiful children. We can learn to accept them for who they are.

There is a place in the world for each one of us, no matter what.

On selfishness

Humans are selfish creatures. We're born selfish; Me, me! Want, want! Now, now! These are pretty basic feelings and we can't be blamed too much for them. Is good parenting basically the attempt to curb that voracious selfishness in our children?

I guess as parents we certainly see it up close and personal while reciting the parent's verbal loop; No hitting or kicking, say please & thank you, that is not yours, wait your turn, those are not nice words, etc.

And what about us adults? Are we selfish too? You bet, many of us. Honestly, I am a pretty selfish person. I am selfish about my time. I know this and admit this about myself. Although becoming a parent sure put a real kink in it. I still am selfish but not able to express it as much.

Remember that sweet baby that someone entrusted to you at the hospital? Who is this kid? Is it really mine to take care of? It doesn't have an off switch! Something new blooms from that realization. I am no longer and will never be really 100% in control of my life situation ever again. In fact, it's not even about me anymore! Then you become distracted while you busily try to calm a screaming infant.

That is parenting for you; a crash course in selflessness. And, being a parent of a special needs child? Even more so.

I like to visit other Special Parent blogs. It never ceases to amaze me the bravery and vision, the honesty and hope, the patience and, yes, the selflessness. Some of these blogs inspire me so much that I list them on my blog so that I can easily keep track of these amazing families. I encourage you to visit them too.

Parenting is a tough job, a selfless job. The rewards are plentiful, resplendent and soul warming but nebulous at times.

I do think as parents, special or not, it is natural to want to pave the way for our kids. We want to open up doors of opportunity that will light a fire for their happy futures. We all want the best possible life for our kids while taking into account their skills, challenges and aptitudes. Whether you are trying to get your kid into an excellent college or trying to help your kid to hold a paint brush. It is all relative.

This we have in common with every other parent in the world, throughout time. Our common thread with humanity.

Connections

One of the reasons I started this blog is to connect with people in an easy, fun way. Sure, it is a great way for family and friends to stay in touch and I love that. But, I wanted to connect with people like me who may feel or have felt the profound isolation and vulnerability of being a special parent. Nothing is lonelier than that.

I am always mightily touched and gratified when a little piece of magical connection happens. And, don't think I exaggerate; I do think of it as magic.

Thank you to all the people who leave little comments or visit my blog. Maybe you know exactly what it is like, maybe you are just starting out or maybe you are just curiously peaking from the edge. Frankly, it doesn't matter because I just don't feel as alone anymore and for that, I sincerely thank you.

I remember when it began to dawn on me that Shea had real challenges that he was not going to just "grow out of". Those were black days indeed. I had to get my brain around what being "special" really was and how I was going to look at it. Denial and avoidance don't work for very long as a strategy and the only real comfort I could find was hearing other "special" parents stories. Those parents understood. I could see it in their eyes and hear it in their voices; they knew exactly what I was going through.

And, what I was able to see was that these parents love their kids as much or more because of the struggle. Just like other parents, they try to see the world objectively to predict the pitfalls and soften the stumbles but even more so. Specials parents possess an almost herculean energy, drive and focus fueled by these frustrations and sorrows. In fact, I doubt there is anything a special parent can not do once they set their mind to it, except of course make their child different than who they are. Many special parents throw themselves into activism, research, art, writing which perhaps is the healthier side of the equation. Many special parents buckle under the strain, both financial and emotional and it is common for marriages and partnerships to dissolve.

It is up to each of us to find and adopt the path that will guide us during these rocky years. After a while, a body of experience builds up in each of us. Whether we believe we have wisdom to impart or advise to give, we do. Because part of this struggle is to somehow, some way not feel so alone.

That is what I want to do with my blog. I am no writer but if I can touch one person and make them feel like they are part of a bigger community of parents who all know what it is like to weep, fight and struggle for their child with special needs then I have succeeded.

So, cheers to you, reader! Thank you for helping me help someone who is helping yet another. This is what it is all about.