Thursday, March 16, 2017

Dear Teachers

I am that mom. I am the mom who calls and emails questioning everything that happens in your classroom. I want a birds eye view of what my little one does each day. I want to understand. I want to know. I wish I still had my little one home with me as I did with my older children, playing, working with them, living life as a toddler should. Instead, I shipped her off. I watched her step on a bus as I walked up to my house, tears streaming down my face. I couldn't look back as the bus honked because as it drove away, so did my dreams of having a typical child, a typical family.

I am the mom who is up at night. I wonder what my little one does at school. Is she scared? She can't tell you if she is. Is she hungry? She's just learning to say "I want a snack". I packed up my little love and trust that you will love her as only a mother could until she is safe in my arms.

Dear Teacher, I never meant to be this mom. I never chose to have a child with special needs that would cause me to question every moment of my pregnancy, delivery and her early life. I never thought I would be the mom jealous of others as their typical kids progressed, typically. I never meant to be that mom who calls, questions and begs for more information to get a picture of where my little one has come from to have hope as to where my little one will end up.

Life isn't easy with my little one. Some days she grows exponentially. I see it. I beam with pride but mostly I swell with hope wanting to believe that no matter what my child does, she will be okay. I want to believe she will lead the life I dreamed of.

I was that mom, pregnant that felt every kick. I loved being pregnant, safely protecting this little being within my womb as she grew. I was the mom that worried she'd be born early or perhaps someone would expose her to something she was not yet vaccinated against. Never did I dream her disability would be something I couldn't control and most likely never caused.

I lay awake feeling guilty. I cry thinking that I brought this child into the world and I can't fix her pain. I cry thinking about how as she tantrums the child within her disappears and if you look in her steel blue eyes, she is gone. She is not there. I want her back. I want to remember what it was like when she was here, before her disability showed up one day riding on a fire truck at an amusement park and how it began to change our lives, not just my life, but the lives of all my children.

I feel bad. I feel deep sadness that I have a child my other children will have to care for. I can never die. They never asked for more siblings and they certainly didn't ask for a sibling with special needs. Sure, they love her. They have grown so much from her but still, they didn't ask for this life, for a life that used to be dotted with day trips to amusement parks that are now filled with therapy where they have to sit and wait.

Dear Teacher, I don't mean to question you. I know that you went into teaching most likely for the same reason I initially did. You love kids. You want to see them grow. You want to see them flourish. I want all that too but what you need to know is that this little one, the one I trust in your arms has my whole heart right now. This little one that I send off on a daily basis to ride the bus long before she ever should have to is vulnerable. She cannot tell me what is going on and while she's gone, I occupy myself cleaning so I don't worry and wonder what she's going when I am not alone.

Dear Teacher, when you took this job as teacher of special needs, you took on more than most teachers ever will, you took on children wearing their moms hearts into your classroom each day. Love them so the moms feel the love you have for their children. With a great foundation, there is hope that these kids no matter where they end up will be happy and one day the families will sit around remembering how important that Teacher was.

Thank you to all the teachers out there, but especially to those who choose to help the littles without a voice. Without you, parenting these kids would be so much harder. I pray you always find strength and love them and teach them as you would teach your own.

Tuesday, March 14, 2017

They Are Happy. Am I?

Last night I attended another SEPAC Meeting. What is SEPAC? Its the Special Education Parent Advisory Committee. They meet in the school a couple times a year and yesterday we listened as Seraphina's in home therapist spoke. She talked about autism. She talked about ABA (my favorite therapy) and she talked about children.

Autism has changed my life in ways I never expected. As I sat with my kiddos today I reminded them how this year has changed us all. Its asked a lot from us. Changes that we never anticipated and yet those changes have been put in place seamlessly and I believe that it was a greater plan than we can begin to understand.

Daily I comb Seraphina's communication "log". Its a PEC chart that has circles and as of our last IEP includes two daily notes about what our Serrie does each day so I can begin working on recall with her. Since her diagnosis, I have focused on her. I focused with intensity. I focused with drive. I focused with the desire of success only a special education parent can have. Daily I obsessed over what she did. Table top activities? What were they? I didn't want to duplicate with fear that I may bore her. I wanted to expand her growth, her understanding, her knowledge. I found outside therapy to help support our Seraphina and I was willing to do anything to make Seraphina "normal".

Last night though, I was reminded that "normal" isn't always what we expect. Normal is different for everyone. I struggle without having that "normal". I struggle that I don't have the life I planned. As I drove up into my driveway last night I came to the realization that I cannot give Seraphina all the therapy I want. I also realized others will get therapy that I won't get, and although that is difficult, it is our journey. It is okay because we have more than others and we are blessed in the therapy we do get. I realized that many of us NEVER have the life we plan. We don't have the dream life we envision but the life that we do have can be a gift if we simply accept the life we are given and use that life to grow us as individuals and as people.

In that hour I realized pouring over daily PEC charts means nothing to Seraphina but time does. As I focus on her individual growth I help her to realize the gifts she has and I understand one thing I heard yesterday as I inquired what the future looks like.

We don't know.

I was reminded by the very wise Principal of our school we don't know what the future holds for any of our kiddos, these kiddos included.

I was also reminded we do know that MOST children with autism are happy in life. I was reminded by Seraphina's therapist that most children with autism are happy no matter if they live life with parents, in a basement, a group home or on their own, they are happy.

As I heard that I almost came to tears but then I understood, I can't change the life I am living. I cannot change her disability or take away her autism but I can give her all she needs and perhaps much of what she wants. I can support her academically, behaviorally and emotionally. I can give her all of me and who she is won't matter as long as she is happy and perhaps when I understand that, I too will be happy no matter where she ends up in life. In reality, this her life is not mine to live but mine to shape and walk along with giving her what she needs to be successful and the best she can be.

Friday, March 10, 2017

You Are Enough

Recently there have been a number of viral posts for mothers. They begin something like...."you are enough". I have read them. All of them because quite frankly, being a mom today leads us to believe no matter what we do, we are NOT good enough. 

It is apparent to me with the number of posts circulating this must be a growing trend of mothers questioning themselves, questioning who they are for their kids and questioning other mothers as well.

Today, unlike in days past mothers are balancing so much. In the quiet moments of the night many sit awake wondering if they are making the best decision for their children. Many work. Many stay home. Both have their challenges. Do you find yourself a better mother working? Can you make it on one income? Are you willing to give your entire self to being home? There is so much in that one single decision that I believe we all second guess ourselves. For me, its often seasonally if not monthly, weekly or even daily. Some question more than others, but I think we all question ourselves and wonder if we made the right choice?

Children are encountering life challenges earlier that the generations before. We have to navigate the emotional and social stresses appear earlier and earlier. There is identified bullying. There is "bullying" which isn't really bullying that is called before its necessary, impacting those said "bullies" when truly they were just children making bad choices.There are kids struggling with anxiety at such young ages we question how the future of their lives will be? We have to make decisions to help them relieve that anxiety and sometimes those changes impact the entire family.

There are more social pressures. They stare our children in the face around every corner. It may be in school. It may be regarding events that happen and how they will look if they attend. It may be regarding social groups they may want to be in or choose not to be in to protect themselves. Children want electronics earlier. The children are seeing apps that are impacting who they are and changing who they want to be. There are also shows that seem benign but end up showing our kiddos more than we ever imagined. Lines of communication are hard to keep open and with the hustle and bustle of life its hard to find time to sit down, debrief and guide. I know for me, I try but I can't keep up.

Children who play sports no longer have recreation leagues that are fun and educational for long however now they have them that filter into travel and intense programs and if they are not involved at a young age, many are a lost cause. I know I try to balance this for my family and want them to be effective teammates but fear I cannot give them the support they need to grow as athletes.

There are more identified special needs than there were in years past. Parents are lucky because they are facing them with the support of social media however that world isn't real and finding support locally can be a challenge and yes, those of us with special needs often feel judging eyes of locals. They are questioning their every move. They question choosing to go out in public? They question therapy and what type of therapies. They are constantly thinking. For me, my mind rarely shuts off.

Parents are finding their kids in situations they never expected. Its in part due to social media. Its in part due to the changing times.

I remember hearing when I was a new mom that my children's young lives were the "best and easiest" days of my parenting. I scoffed, but once again, those mothers who went ahead of me were right. Those lazy days with Sesame Street or the dreaded Cailou were in fact the easier days in life. Those days when you met a friend for a park play date, a walk around the block but when you think back, I am sure you too worried, was it enough?

I watch as mothers question themselves. I know I question myself. I watch as mothers talk about other mothers, sometimes in kindness others in judgement. I do it myself and often wish I didn't (well the judgement part). In the past year I have begun a transition as a person and as a parent. I never expected this change and yes, it was brought to me by a diagnosis I never wanted to hear but this autism diagnosis has been both my greatest challenge and my greatest gift. Each day it has taught me something. It has taught me one thing.

We all want the same thing. We all want happy, healthy children who we raise to be accepted and understood. They will not all be productive in society and that is okay. They still deserve respect. And love. We will have friends who experience loss perhaps by accident and perhaps by choices our children make and those mothers deserve support. They deserve understanding. They deserve our love.

Today we are all on our own journey. Each child is unique and will challenge our entire being however but you were chosen for this child. This child was created to be in your arms. You are enough. We are on the same team, to raise a better generation than the one alive today. Instead of questioning, lets give ourselves the credit we deserve. Instead of judging, let us support and listen and try to understand. In reality, WE are enough We are the moms of today's generation and we are the guides of the future.

Sunday, March 5, 2017

Autism Solidified Our Team

I have always been steadfast in my belief that God gives us challenges not just to make us understand ourselves but to grow ourselves in life. Prior to Simone's birth, exceptionally pregnant, God placed a cross in our path that almost broke us. Through prayer and faith we grew. Our marriage strengthened and we became renewed. There was no magic, there was no trick, it was hard work, evident on both our parts.

Fast forward there was the loss of Zoe. Again, as I wept in bed my husband labored caring for our kids just long enough for me to emotionally return and then when a few days had passed he reminded me I had to get up, I had to move forward and I had to find the good in each day.

Colin and I met when we were young. He was a carefree frat boy who loved partying and I was an emotional sorority girl. We have changed a lot but not more than we have in the last year. There have been nights we have gone to bed and my emotion consumed me as I wondered why he didn't feel the pain as I did but its come full circle and I know why.

We are a team.

We were chosen for one another.

We do not share many characteristics that are alike. I am emotional and outgoing (though I am learning to be less emotional). He is stoic and reserved (though he is undoubtedly the funnier one in our pair).

He balances a career and a family and I balance the needs of our kids.

It works.

Some days our plates are too full but it never ceases to amaze me how when one of us has a plate that topples to one side, the other is there to catch it. This weekend is a prime example. After a week of a cold and two healthy days I came down with a strange sore throat on Friday. Friday night I was down with a fever of 103 and I couldn't manage the kids. He cooked. He cleaned up (I think). I slept. Saturday he kept the kids quiet, they played, they had fun and I slept. I headed out to find that I had strep and the "reddest throat" the doc had ever seen. I was also called "hot" by the nurse who quickly corrected himself telling me not to tell my husband. I was grateful to my husband who took my tiny tot to dance, he headed to the grocery store to grab my meds and dutifully brought me medicine and water through the day. He did mass. With all 5. He did youth group game night, with all 5. He put them all to bed and then came to check on me. Today I feel a little better. Still wiped but no fever (thank God) and I am in awe of him. He continues to manage the kids with grace. He continues to get them to do what is needed and is planning to take all 5 out.

We have always broken and conquered but since the diagnosis of autism its obvious that sometimes we need to push forward as a team and this weekend was an example of that.

I am so grateful that I saw him standing at a party and let him know "I am going to marry you" because 2.5 years later I did, and here we are 17 years later still growing in strength in our marriage and in our love.

Thank you autism for helping us to grow closer together...though you challenge us at times you are a reminder of how things that are not always good allow us to find good from challenge.

Tuesday, February 28, 2017

There's Something About Felicity

I have always said, there is something about Felicity. Not sure what it is. Perhaps she's an old soul who when arriving on this planet fussed to no end because she wasn't content in just being a baby. Perhaps she is pure. Simple and unaware. Felicity always surprises me...sometimes in ways that try my patience.

Last week Felicity turned 8 and without the loss of her sister, she wouldn't be here. My life as I know it would be different and I know I wouldn't be as lucky as I am for having her and raising her. I have shared how Felicity started out struggling. I shared how neighbors would check to see if I was okay because her colic had her crying from dawn til dusk and I shared how she's truly the meaning of her name, happiness.

Today, as I rushed around trying to get dinner cooked, homework complete and make sure that we had all we needed for the next day she appeared. She stood before me and asked to create. You see, Felicity also creates...a lot...and often leaves her creations (and creative methods all over the house for the little ones to get and use in various places such as couches), so we have a rule, you must as to create. And she did. I agreed and looked up as she ran to grab the markers, paint, pens and pencils and prop herself up at the table. I was chatting with my good friend and glanced over to see "I love Austin".

You love Austin? Who is Austin I wondered when she piped up and said "NOOO I love Autism.".

You love autism? I asked as my friend giggled through the phone and instantly I smiled. Truth is, this kid pointed out what I already knew. I love autism too. I don't love the difficult moments but I love it for so many reasons.

I love that I have become more patient....because of autism.

I love that I have become more understanding....because of autism.

I love that autism has made my children more aware of others with disability.

I love that autism is finally showing me what I am supposed to do with my life and why God chose to have me here on earth.

I love that autism teaches me to relish in the moments. I love that because of autism, I live, eat and breathe milestones and those simple sentences you never thought twice about are gems that you share with friends.

I love that autism has made my marriage better. 

I love that autism has taught me to allow myself to be snuggled and cuddled the way a mom should be.

I love that autism has taught me so many more have it so much harder than I do.

I won't pretend that autism hasn't caused me to struggle. I won't pretend that autism doesn't cause me to question myself as a wife, mother and friend but I will celebrate it when I am reminded of all the good autism brings. 

As I said today to someone, I never planned this journey but the girl who is guiding me along the way is my hero because she's made me the person I was intended to be.

Friday, February 24, 2017

What If?

Tonight I went out. It wasn't my typical Moms Night out with my safe girls Amy or Kim, I was out, in new territory with moms like me, moms with children who have special needs. Strangely enough I came down with a wicked cold just a couple days before attending and I wondered if that was my signal to stay put. See, honestly, I am a home body. I am capable of getting out but getting into real feelings for me is scary but still, I went. For the first time, I didn't have trepidation (except for the massage and maincure--which I participated in). It was good to be out. Out with moms who got it. They were moms of special needs. The ones who listened as doctors told us about diagnosis we wished we never encountered and the stories where we had to laugh about vacations gone wrong or well, just encountering life in a way we never imagined.

I shared.

I listened.

I thought.

Before I went in, I made a video blog about how I truly believe people are here to support us, to care for our children and to love them, for who they are, Differences and similarities alike.

Then I thought. In the last few days I had been facing a funk. My friend, the safe one, told me she had heard others were feeling funkified as well but for me I wondered if my funk was normal? I wondered if I was getting through yet another hurdle in my journey with a child who has autism. I questioned my other safe friend and she told me it was normal but still, I felt guilty.

I wondered.

Did I cause this?

Did I marry someone who my genetics and his caused this child to face struggles that I wished no child experienced?

What if I had married my high school sweetheart?

Would he and I have had children like Seraphina?

This week I had a lot of thoughts going through my mind and I attributed them to the IEP. See, when IEP meetings occur I tend to overthink. I tend to take it all in and question all that has occurred in my life and wonder if it was something I did that caused this autism diagnosis to appear?

But what if?

I realized today as I sat with a group of women, I could question it. All of it? The genetics, the exposures, the foods, the vaccines but in the end, would questioning it change the diagnosis?


I have a choice. I can choose to continue to question or I can just be. I can choose to live.

So after tonight I realize, there is no need to question because questions won't change the answer. This IS the answer. It IS the life we have been given ant it is our choice to choose to make it all it can be or to spend time second guessing and questioning?

Today I have decided, I choose to get rid of the "What Ifs" and live with that "what we have" and I think that may just make life a little easier.

Monday, February 20, 2017

Here is a Secret...SHHHH.....

Today our third turned 8 years old...for those who didn't know Felicity as a baby, she was probably one of the most challenging babies ever...she would cry until she vomited. She screamed so loud that my neighbors even wondered how I made it through the day....what I didn't know is she was preparing me. She was preparing me for a journey that was climbing more than a molehill. It was scaling a mountain and instead of free climbing experience with her allowed me to have the proper equipment to welcome a child with autism and other disabilities into our home with strength.

The other secret is that autism has changed each of my children. The other day I was blessed to enter into an insurance agency and share Seraphina's story as well as the gift of Reach. As I did, I proudly shared so much about Seraphina and her journey. I stood strong as I talked about knowing and hearing the diagnosis from the lips of the doctor and knowing that when those words came out they were just a strong support for the fact that I as a mom knew what I was talking about. What I couldn't seem to get through without crying was how the diagnosis doesn't just impact the child or the parents, it impacts the children. I read a lot of blogs and realize the heavy load these disabilities place on the kiddos but these disabilities are also gifts.

Autism has changed each of my children. It has allowed me to see what my children can be when pushed and driven to be more than they ever anticipated they could be. Its allowed me to see that each of my kids can generously give of themselves. Felicity was the epitome of that today as she opened her birthday gifts announcing that sweet Serrie could play along with her and then noting that she wanted to get her a WellieWisher of her own.

Autism has given them a stronger sense of compassion. Its made them able to see children as just that instead of judging them for behaviors that they may not be able to control. They are now able to always give the benefit of the doubt, something I am still working to learn, as an adult.

Autism has given us the realization that each moment we have with just one or a couple of our children is a gift. Those mundane trips to the hardware store or the grocery store are now opportunities to share in special moments where we talk and share instead of simply going through the motions. It reminds us to really celebrate the moments and the time we have together when we don't have to worry about the diagnosis.

Autism has reminded me how blessed I am to have 4 typical children. Its allowed me to see that not having to deal with extra doctors appointments,insurance,extra therapies,IEP's, in Home Therapy, Therapy Centers and just the normal trips to and from stores, birthday parties and outings with hopes of minimal to no meltdowns is truly a gift.

Today as I drove off with my two birthday twins in tow, I was reminded of all these gifts that autism has given us. Certainly its taken away from what I had envisioned for my family but its also created a new vision that I can choose to embrace and allow to work to change who I am and who my children are and perhaps we an be the voice of the good this disability brings.

As I lay my head on my pillow tonight, I am grateful. What a weekend its been capped off with the reminder of how blessed I am that autism chose me to be a momma to one of its amazing kids! A very happy birthday to a Big Autism Sister who loves her little autistic sister with ferocity of a mother. Thank you for preparing me to be a better mom and I pray that 8 brings you happiness, peace and joy....thank you Felicity for living up to your name HAPPY birthday Rainbow Baby!