God Does Not Care that you have a Special Needs Child

GOD DOES NOT CAREGod is in the business of resurrecting! Let me explain…

This was the title of a sermon given by Bishop Michael Lunsford (may he rest in peace) , five years ago.

When he announced the title, I was like “wait, what?” We are so used to hearing that God cares that this caught me off guard. He then went on to talk about his difficult upbringing, fraught with hardship and dysfunction and how unlikely a candidate he was to be ordained a pastor, let alone a bishop.

God didn’t seem to care that this Bishop came from a family that clearly had issues. He was called anyway. I just want to encourage you that, whatever you are going through, it’s not the end of the road for you and your dreams. God doesn’t care about your background, or what happened to you, or about your crazy dysfunctional family, or the fact that you are broke, or maybe, if you are like me, that you have two special- needs kids . He wants to use you anyway.

When Dan was born and I decided to stay home for good because of his diagnosis, it forced me to think about what I really wanted to do with my life. Could God possibly use me now that I was a special-needs mom to two kids? My previous job as an art teacher re-introduced me to art-making and that part of myself was re-awakened. I opened up my shop, http://www.nelarte.etsy.com (Nelarte- previously Nelesc Designs), when Dan was 14 months old, and although not running in full force,  it’s still there.

Seven years after opening my shop I re-discovered my other passion, art history and museum work, and returned to work with an amazing organization called Arts & Minds which combines my passion for people and art. And guess what? My experience as a mom to two children with autism is valued there.

What I am trying to say is that God is in the business of re-awakening, rediscovering, and yes…resurrecting!

That day, before that sermon, I was struggling with self doubt but I felt like God zoned in on me and told me loud and clear I DON’T CARE THAT YOU HAVE TWO SPECIAL NEEDS KIDS, I STILL WANT TO USE YOU. YOUR LIFE IS NOT OVER, IT IS JUST BEGINNING!

Today, God is telling someone reading this, the same thing.

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*Stories like these will appear in my second book about self care coming soon.

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You Are Allowed to Turn the Special-Needs Talk Off

SPECIAL NEEDS TALK OFF

I know it’s probably kind of weird that I posted this right in the middle of Autism Awareness Month when we want to get people talking about autism but…sometimes I have the need to turn the special -needs talk off. Does that happen to you too? Maybe it’s time we, as autism moms, also bring awareness to that part of our lives.

There have been times when – at a banquet, at church, some fashion function,  a gallery opening,  an informal get together  –  I have been approached by people wanting to talk to me about a movie they saw about autism, or about a friend of a friend whose child just got diagnosed. They give me books about autism, movie recommendations, information about doctors promising a new cure,…it can sometimes get a bit overwhelming when all I want to do is be Nellie and have a good time. Like an actor who gets type-cast because we are used to them playing a certain part, I imagine it’s the same for special-needs mom bloggers who talk about their children all the time in hopes to bring awareness. We want awareness but sometimes we need a break.

What people don’t realize is that, with two kids on the autism spectrum, my life is consumed with special needs talk. From the slew of professionals at my finger tips who are/were coming to my house every day, to my own online research, to discussions I have with my husband, and finally from my kids themselves. At times, it can be a 24-hour station.

But how do you turn off the special needs talk? First of all, you have to realize that people mean well. They love you and they want to help, or show that they can relate. So, when I really don’t feel like talking about autism,  I try to be cordial, and in a very nice way, tell anyone who wants to broach the subject,  that today I will not be talking about special needs anything, plain and simple. Give them your number/ e-mail and tell them to contact you later.

It does help if you have something planned to say ahead of time if the special needs talk gets out of hand. That way, you don’t come off as defensive or rude. I politely interrupt and tell them, “I don’t mean to be rude, but I had a crazy day with my kids and I would like to talk about other things besides them.” The people who love you will not get offended and will understand. Those are the people that matter.

How do you handle the special need chatter? Do you feel comfortable shutting it down? Are there other ways to go about it? Always eager to learn.

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If you can’t Find a Solution, Change the Rules

CHANGE THE RULES

My Dan has sleep issues. It has gotten better, but he still occasionally wakes at 3 AM craving food, sensory play or just wanting to be next to me.

At one point in time I was EXTREMELY sleep deprived. Not just one night, not a couple of months, but two years worth or more of sleep deprivation. I am never going to get those years back and my wrinkled, saggy eyes are paying big time for it. So, at that time,  I got to do things that might seem unconventional to some. Let me explain…

It was hard to find a solution to Daniel’s sleep issues. He didn’t respond to anything for a long time. Young mothers are always taught this rule: when the baby sleeps, you sleep. However, when Dan’s waking hours consumed me, his sleeping hours had to feed my soul. I was/am an artist mom and I need to create! So what this meant for me was that while he napped, I wrote, sewed, or screen-printed. This got hard to sustain long term, though, and I eventually crashed with him during his nap, but you know what I mean. I had to change the sleeping rule to fit who I was.

Same thing happened with his birthday a couple years ago. Dan had been waking up everyday two weeks prior to his birthday that year. I had previously told the teacher that I would come and celebrate in the classroom like I have been doing years past. The night before his birthday, Daniel finally gave me a full nights sleep. It was his birthday but I got the gift! It was the first time that I had felt alert and ready to work on my blog, my website, my sewing projects. I was still planning on going to the classroom but with much hesitation. I didn’t want to give up this valuable time! I felt I was giving up my day of productivity to go into the classroom for 45 minutes all because it is something I do every single year. The teacher ended up e-mailing me and said that she was not going in that day because she did not feel well. This gave me permission to call out too! So I called the school and told them I wasn’t going to celebrate Dan’s birthday in school, but at home instead. I did feel guilty and thought “how horrible everyone will think that I am for not bringing in a cake to school.” I went on beating myself up when I thought; what people don’t see is that I have been patiently up with my child for two weeks straight, loving him, singing to him, rocking him, hugging him, hoping that any minute now, he will dose off to lala land. During this time I did not beat him nor yell at him. God sees that, I see that, my family sees that. I deserve a productive day to myself where I am alert and ready to work. This has to be enough for a rule change.

So sometimes there are rules that simply do not apply to you and who you are. Now, I don’t mean rules concerning moral behavior or that you are exempt from the law. By all means, follow those rules! But sometimes the rules typically given to moms (of neuro-typical or special-needs children alike) do not make sense to your particular situation.

This is a lesson I continue to learn.

*Much of this post was written six years ago and modified recently.

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People Need to See You without the Kids

WITHOUT THE KIDS CANVA

Believe me, I know how hard it is to go anywhere without the kids! You don’t have to tell me how difficult it is to find babysitting for two special needs children. But people need to see you without your kids once in a while. You will forever be the poster child for autism if you don’t.

One place that we regularly go to as a family is church. During the service, Dan crawls all over me as I try to prevent Micah’s tantrums. By the time I get home, the day is a blur; I don’t know what the pastor preached about and could not have one conversation after the service, if anyone dared come near me at all.

If anyone does approach me at church it’s usually to tell me about a movie they saw about autism, or that they have a friend whose son/daughter just got diagnosed and ask whether I have any advice for them. Then there are the times when well-meaning parishioners gain a wee bit of knowledge about autism and begin to dole out chunks of advice, book recommendations, and places I should go to help the kids. I used to blame them but then it hit me; why wouldn’t they talk to me about autism? It’s all they see when they see me dealing with my kids and their antics! I had inadvertently become a walking poster mom for the cause with my kids in tow.

If people see you all the time with your kids as they act up and crawl all over you, that is the image they have of you and that is all they will see, and most likely, all they will talk to you about. They can’t see the full view of who you are with the kids in the way!

I realized that this needed to change and told my hubby I had to go to church at least twice a month without the kids. It worked. At first glance, people asked me where the kids were but after that was taken care of, they commented on how great I looked in my outfit, how good my hair looked, inquired about my fashion business, aspects of my life that were not kid related. It was amazing. People saw ME for the first time in a long time. You need that and people need that. People WANT to see you.

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* This was written five years ago but I felt it was valid to leave as is and not update. Since then, we have moved to a new church where, after facing chalIenges, we have found a way to attend church, consistently, as a family.

Have the Conversation with the Right Person

CONVO WITH THE RIGHT PERSON

There have been times when, in my moments of darkness, I have shared my raw, honest feelings about mothering special needs children and they have come back to bite me in the ass. I had the conversation with the wrong person.

The person in question manifests that they are indeed the wrong person when he/she responds with a blank stare, waves away your feelings and tells you not to feel that way, or blatantly judges you. Unfortunately, sometimes the wrong person is rather close to you; your significant other, your mom, and yes, other special needs parents. That is probably why you chose them, because they were literally close by and you needed to talk to someone, anyone.

You have to find people that can handle your honesty. I remember being in church and people telling me; “wow, you are so patient, so good with your kids”, “you’re a saint.” If they only knew how I sometimes felt inside, that I sometimes questioned my decision to have children, that I sometimes felt I caved into pressure to have a second child when I was totally content with one, that I often wondered if I should have had children at all.

I have wondered what my life would have been like without kids, or without Dan. These are real, raw, honest feelings that need to be voiced. When you have these feelings, you are in the moment. Your feelings aren’t you, you are reacting to a situation and you say the weirdest things. You need people around you that can ride you through these moments and see you to the other side.

I thank God for my sisters. We are at a point in our lives where I can tell them anything and know that I will get nothing but love in return.

But if you don’t have biological sisters you can talk to, there are sisters out there that can handle your honesty. I promise you! Keep looking until you find them.

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Remember Who You Were On This Special-Needs Motherhood Journey

REMEMBER WHO YOU WERE

I am currently working on a book on self-care, a series of lessons I have learned (and continue to learn) on my special-needs motherhood journey. I’ll be offering some of them here, on this blog. Feel free to let me know your thoughts here, or on my Facebook/Instagram pages.   Here’s the first one…

Remember Who you Were

Any type of motherhood, special needs or typical, causes women to feel like they’re losing themselves. It’s the perennial question of balance that women face between identity (work) and family. The constant work of caring, and ultimately being responsible for another human being, leads us to question, and then adjust our identity to this new life. This takes on a whole different meaning when you have special needs children. The care can be daunting. I feel like I am still adjusting, my GPS constantly on recalculating … I once wondered if I even wanted children at all and what I got was children that required more care than I would ever imagine.

What helped me in daunting and overwhelming moments was to remember who I was. My circumstances had changed drastically but I was still me at the core and I needed to reaffirm that. In the midst of such drastic change, I needed consistency.

I went to things that reminded me of myself, pre-kids. I got out my old cassettes of Sting, my all time favorite musician, and started listening again. I also started reading his autobiography and it really helped me to reconnect with Nellie pre-kids. It also reminded me of the time I went to see him in concert with my friend Maxine back in the 90s.

After my oldest was diagnosed, I went back to museum work. I needed a semblance of normal life again. I was coming to terms with the diagnosis and needed to tap into the part of me that was untouched by it. My life before the diagnosis… museum work. Other opportunities that fed into the pre-kids Nellie also began to surge. I taught a class on Puerto Rican art and lectured on Latin American art in various libraries in the New York Public Library system. All of this helped me reconnect with what I still continue to love: art and art history. I felt like my old self again and this fed my soul and helped me be a better mother to my oldest.

After Dan was diagnosed, I went further back and started screen printing and sewing again, passions from high school and college. I even opened my own shop online and started selling my screen-printed and reconstructed clothing. This further solidified my identity and in turn helped me be a better, more at peace, happy mom. I was drawing from my past and taking inventory of the things that made me really happy.

In the midst of the loss I was feeling, this reconnection to my old self, offered me joy.

What can you tap into from your “old self”, your “pre-kids self”, that can positively ignite you as you live in your present circumstances?

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