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Showing posts from June, 2016

The Gift of Being a Special Needs Mama

Today I had a conversation with our church Pastor. If you know him, you know he is truly special. He is willing to listen, wants to love and is working on sharing Jesus with others. Today, after our "business" discussion he asked abut Seraphina. It wasn't because he "had" to or because he "needed" to but because I believe he truly wondered..."how is Seraphina doing?".

To be honest, its hard to gauge how Seraphina is doing but I know I am better and often when Mom is better, the kids follow. I am no longer stunned and shocked (even though I had a hunch for a year), I am working on living the new normal. This life that we have been pushed into and this opportunity I have.

I said opportunity. Perhaps other moms of special needs kids would beg to differ. Perhaps I would feel different if there were greater issues with Seraphina but for right now, I feel this child is an opportunity.

First, she's an opportunity to grow. I am learning that I h…

There are others...

There are still other kids in this family. I know, the last few months have been overwhelming. I have ended up spending more hours on meetings, emails and readings than I could possibly count and though I have tried to do what I can for who I can, I feel like a massive failure because.....there still are more children...those four kids I had prior to our little Princess, they are still here and still in need and they are still developing and growing in ways I could never imagine. Some days I feel like I am running on a hamster wheel trying to meet their needs. Vacation. Bible school. Library Trips. Parties. Playdates. Just trying to make sure they know THEY are just as important as our princess, our little one that is growing in our family emotionally and spiritually.
Tonight was key in reminding me about each of the other kids and how they have grown. Its a reminder THEY need to be recognized for their own growth, their own individual endeavors and their own abilities to be WHO they …

It Takes a Village

When we moved here and for the four years following, I was insistent that this home was temporary and we were going to be on to bigger and better. This was with some discussion about my husbands job AND the fact that I just didn't feel like I fit in.

Truth be told, I don't fit in. I finally realize, that is okay.

I have however built my village.

Sometimes life is lonely. Maybe you are not the "coolest" and perhaps you aren't the one out every weekend but what I have realized in these last couple months is, THIS is home. No matter how I shape it, twist it or turn it, THIS is HOME because of the people here.

Home is more than my house. Its more than my family. Its more than my town. Its a community of people that are pulled from all walks of life that have reminded me in one way or another in the last couple months, that I am not alone. I truly believe EACH person has been sent to our family by God.

It could be the simple text.

It could be the knowing smile.

It cou…

Exhaustion

That 4 a.m. wake up had me on the couch after lunch. It seemed like all was going well this morning until I hit a wall. This mornings meeting had me in tears...before I even entered the building and then again before we even sat down. I drove to the school early to watch the children arrive. I watched as the teachers welcomed the kids happily and while they seemed kind and loving, tears welled within my eyes.

I ran into a veteran special needs mom. I made a couple comments about the drop off and then signed in to wait for my "special services" meeting. As I walked into the classroom, full of small wonders I began to feel myself warm with anxiety. I looked around and thought of my own little one in the classroom, and my being at home. Alone. Tears flowed. I began to get so anxious I felt very defensive. They promised a verbal classroom but no children were talking. Then there was one. And another. I begin to feel more at ease. A friends mom, a well known para gave me a hug an…

My First School Meeting

I won't lie, I have been up nearly 45 minutes stressing about our first "school meeting" already. I am worried I won't know what to say or I won't understand what they are offering. I am worried I will make a mistake in getting the right services for my child. I don't want to be a bull in a china shop requesting too much but I do want to make sure that my child has the best services for her own needs. With a toddler that is special needs though its sometimes hard to assess what those needs are. Just last night as a friend came to pick up his daughters, I watched as she engaged, made eye contact and giggled. I live for those moments and I want more of them. How do I put that into words when making a request for services for my child? Can that even be part of the "plan"? I already have so much paperwork that I have had to start a pendafile to carry with me to meetings and appointments. I wonder how I can give her what she needs without forgetting what…

This ISN'T What I F&*KING Planned

I want MY plan back. The one where I watch as my 5 year old heads to Kindergarten and I play Pre-School Games with my last born baby. I want MY plan back where I watch as my kids flourish and grow but this spring, MY plan was changed. My plan now includes speech twice a week at a University nearly an hour away, four kids in tow. My plan includes therapists in and out of the house four times a week and My plan includes IEP meetings and plans for the fall when my just turned 3 year old boards the bus because "special services" says she needs it.

My plan, isn't His plan and I am now hitting the angry, tantrum stage where I want to just scream "ITS NOT FAIR".

Sure, I get it. I am so blessed. I have four healthy kids. I have a husband. I have a marriage. I have a fifth child with special needs but she's moving forward and flourishing but I like control and I fear being out of control.

I also know that Seraphina's diagnosis isn't life threatening but it d…

The Good The Bad and The Ugly

Autism and being in what I refer to as "crisis mode" has it's perks. It seems those momentary blips of discomfort or those sudden changes of plans no longer drive me over the edge because in reality I got a swift kick in the pants and realize there is more to life than worrying as lamenting about the fact my kids shoes don't match or the fact that two of my five kids refused the homemade meal I painstakingly made. It's allowed me to see the good in quiet moments, like the one now where I sit outside mass with a tiny tot buckled in happily coloring and waving "bu-bye" to church when we really SHOULD be in mass. It's allowing myself to accept help from friends and strangers and swallow my pride and face my fears . It's also connected me even more deeply with old friends...like the guy who took time to send me a spiritual quote today and a quick note letting me know he's thinking of our family or the reconnection with a virtual family of gals I…

Learning and Life

Its the last day of school and this year has been a doozy. Such a doozy that I almost missed seeing the girls off and getting what they needed for their last day. I am exhausted. Mentally. Emotionally. Physically. In that exhaustion I am growing, changing and realizing so much about the gift we call life. This year hasn't just been a journey for my kids (which it has), its also been a major change for me. Two of my kids lost dear friends mid-year to school change. Their resilience astounds me and what is more, their determination to remain friends impresses me. I had momentary lapse of sanity and decided because I was too weak to stand for my beliefs that I would yank those kids and go to public school even though my belief was that our school actually NEEDS more Catholic Faith. Our Cecily lost her opportunity to continue in gymnastics due to time and money and I realized that though I loved the coach, team and parents, I had to do what was best for our family. We also came to the…

She's Autistic

That word. Its such a challenge for me yet I hear myself saying it again and again and it finally makes sense. The tantrums. The screaming. The fact that she wouldn't always look you in the eye. My daughter, this beautiful gift, named after her Angel Cousin is autistic.

Yesterday I met with Early Intervention. They come out of The Arc and when they arrive its like they are old friends I have known all along. Their warmth, its inviting. Their presence, its a gift and their support its unlike anything I have ever experienced.

The last month has been a whirlwind. The moment I decided I had to call I knew the answer, "she's autistic". I am floored at the support. I am most floored at the support from those who I don't know well. That friend I mentioned the other day, my neighbor who has been her "Fairy Godmother" since birth and of course that random woman that came to me in the store as I cradled her hoping her tantrum would be short lived.

I never imagine…

Those Words

Words can mean so much. They can capture feelings felt, once felt or you hope to feel. They can also suck the wind out of your sails sending you into a place you never thought you would be.

In 2005, when Simone was born, she was different. After a couple months it was obvious she had sensory integration issues. At two months, Early On began a program and by age 3 when she went to preschool and they tested her, she did not qualify for further services. Though she still struggles at times, she's been able to mainstream well and has so much to offer in her life to others. For me, this was a struggle. As I tried to manage as a new mom, a mom with a husband in grad school and a mom living far from her parents, I adjusted learning to help her through what she needed and today, I would say she's thriving...especially after hearing she jumped from a cliff into a waterfall, tried a rock wall and enjoyed paddling herself in a kayak this weekend.

Friday though was another set of words th…