Wake up call

Sometimes we are in our own little bubble when death slaps us in the face. This has been a tough weekend. Two very special families to me lost someone they love. It’s terrible and not fair. But, it reminded me that we are not guaranteed tomorrow. 

Aside from the circus our own world can be much more is happening around us. Sometimes I get down in the dumps or angry but on days like this I am thankful.

I am blessed to have such wonderful supportive people in my life. People that I have grown so close too. It can be frustrating when others do not realize the challenges you may be facing and honestly some people can be downright mean. This week I will be home with my babies because of death. Everyone should get to grieve and if that means that my babysitter must go that is how it is. My son has special needs which means he requires special care and I do not expect everyone to get it. If you don’t know or care to learn about autism that is on you. But, it means that he needs me more then a neurotypical child. He requires extra attention, extra patience and extra love. I can count on my hands the amount of people I trust to give that to him. This weekend has made me think a lot about where I want to be versus where I am. Everyone is fighting a battle you know nothing about.

Be nice, be kind and be generous. Be nice even when someone may not be nice to you. Be kind because those who seek kindness show it in the worst ways. And be generous because one day when the tables are turned you will wish that someone would do the same for you.  Whether being generous is in regards to your time, money or anything else just do it. And keep looking forward if that’s the direction you are headed for. 

A select group.

When you become a parent it’s like joining a club in high school. You meet all different people who more or less are going through similar experiences. 

When you find out that you are a parent of a child on the spectrum it is like being chosen for a select group within your club. You all share a commonality. It is rewarding, you discover your not so alone after all. 

These parents are tough, genuine and extremely compassionate. They understand meltdowns, sensory overload, and forehead kisses. They know about sleep deprivation, routines and rigidity. Wandering, flapping and spinning is their “normal”. It is okay if you can’t have a play date because your child is having an unusually tough day- they get it.

I have learned so much from other parents of children on the spectrum. Collective ideas of problem solving that they have attempted. We are all in the same boat rooting for each other. At first I was very reluctant to talk about my son’s autism but I have realized that mainly receiving help is what it has brought. Also, after speaking up I have found a lot of people that either have relatives on the spectrum or are they also are parents of a child with autism. You know judgey bad eggs are always out there. But, more times then not I have found positive uplifting friends. We can all use at least one of those if not more.

Recently, I went to a parent meeting and I was surprised at how different yet similar all of us were. You can see small rewards like small requests from their child bring tears to their eyes. You can feel the happiness it has brought them to get to this point. Instead of feeling jealous it made me feel hopeful. These parents have all taken tiny baby steps that take much longer with their child then a typically developing child and they got to finally see a leap forward. Time can be so daunting. It moves too fast and yet sometimes too slowly. Going to these classes and meetings remind me that in due time good will start to happen. Being in a select group is not at all a bad thing it’s just select. 

Being Aware

So I told myself I wasn’t going to write anything about Autism Awareness day. And well, that was a lie. I started really thinking about the entire day. One day out of 365 days in a year. Yes, it’s supposed to be a whole month but one day is celebrated as Autism Awareness day “light it up blue”.

People get upset because they feel like everyone is aware and it really should be called acceptance instead of awareness. But, for a lot of parents with children on the spectrum having people be aware is the first step.

To me you can’t have acceptance without awareness. I had a conversation about being in school when I was younger recently. I’m sure some of us have had a similar experience. Do you remember possibly having a classmate that maybe was behind? Maybe they took longer to do everything? They may have received extra time or had been taken to a separate room at times. Maybe you thought why is this person in my class they obviously aren’t up to speed with everyone else. You were aware, you noticed. Maybe that child had autism or another developmental delay.  They needed extra time to process information. The clock ticking and noises surrounding them were far too much sensory overload. They were in your class to make you aware of others like them. They were in your class to be able to accept being behind and learning to do things on their own in a typical setting. Now, if you had known that would you have practiced acceptance instead of impatience? 

Maybe or possibly not but not only do we need to be aware but also be able to accept. Being aware is the first step. Everyone is fighting a battle you know nothing about. Try to be aware and accepting because when it is your child that you are making the decision for that is certainly what you would want. 

The power of yet.

Some days we marvel at all that our children can do. But, for many of us with children on the spectrum we have to learn to rely on hope and patience lots of patience. Did I mention patience? We learn about children that are “typically developing” or “normal”. What does that even mean? Would you want to be considered either of those?

Often times we shelter our kiddos from situations where they are surrounded by children that are typically developing. Just when you think you have turned a corner you go to an event and see how much longer your journey will truly be.

My son is 3. He doesn’t speak yet, he is not potty trained, he rarely points and is a very picky eater. Most 3 year olds can have full on conversations, they are potty trained and while they may be picky eaters they can point to what they want and make choices with ease. We are not there yet. We went to a birthday party where we saw a one year old pointing, waving and saying words. It hurts. On one hand you feel happy for those parents and  on the other hand you feel sad for yourself. But the pity party has to end.

I have taken all advice I have been given with a grain of salt. But, one gem that I would like to share is the power of yet.

Sometimes I really get down on myself and feel like a failure because my son is not doing things that typically developing kids are doing. But then I remember the power of yet. He is not speaking yet, he is not potty trained yet, he is not pointing or making choices yet.

Things take much much longer when you have child on the spectrum. But, the victories are huge and rewarding. We must try not to compare our children or shelter them because teaching moments are everywhere.
And they may surprise us yet.

A whole new way of thinking…

When it comes to being a parent of a special needs child the learning curve is huge. The Autism Spectrum really is a huge broad scale. I started reading about what it meant to be on the spectrum when I suspected my son most likely would be diagnosed. I always have admired people who have had to complete continuing education for their career. I now understand continuing education so much more because I feel like a decent amount of my time goes to exactly that.

Autism has many different facets. I will talk about some of what I have found with my own child. My son is very high energy. I have never meant anyone with the amount of zest like him. He runs, jumps, spins, and basically has a full workout constantly. He takes laps around our living room. He will get hardly any sleep and just keep on going. Sleep is another huge variable. My son has no consistency when it comes to sleep. Some nights he will go to bed right after our long routine and conk out until the morning. Other nights he will stay up for quite a bit and wake up in the middle of the night for no apparent reason.

I never realized how much research and reading I would do to discover how to help my little man. It’s all worth it of course. But it is hard. It’s hard being a parent and it’s even more difficult when your child has special needs. Everything must be planned out as much as possible and even then wrenches certainly get thrown in. We have to bring specific meals because he will only eat limited foods. He has times of the day when he is just not in a good mood and will meltdown if we aren’t home for his routine. He is a wanderer so he either he must hold your hand or be in a stroller which he is now getting too big to be in. Every time we go out as a family and no meltdown occurs is a success.

“I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.”

Mommy Life

Before I had kids I had these amazing thoughts of how things would go. My kids would never have meltdowns, sleep all the time and eat everything no problem. Ha-I was pretty funny. Having kids teaches you so much from really simplistic things like you should carry snacks all the time to really deep things like what you would do just to make these little kiddos happy.

Some days I feel like I have no clue what I am doing and other days I feel like I am rocking motherhood. 🙂 I have been challenged by Chelsea to do the Rocking Motherhood challenge.

Thank you to Chelsea for the challenge.
Read her blog here French Lemon

Also I would like to tag Modern Twin Mom Sunit Suchdev’s blog.

This is my list of why I think I am a good mommy.

1. My babies are very well fed- even if they don’t always enjoy the healthy food I try to give them.

2. They have each other and I make sure to have them hug and play with their sibling no matter how short lived.

3. Baths. My kiddos love water and every night we have a very long night time routine and each one gets a bath. We all love clean kids right 😉

4. I am very OCD when it comes to vaccines, and health. I try to make sure we are always right on track. No matter how much they don’t think our pediatrician is Doc McStuffins.

5. We go places even if it’s hard and I have to bring the kitchen sink. This is not an all the time type of thing. But, I really try to expose them to different reasonable places when I can.

6. I try to encourage independence. Even when it takes repeating myself a billion times and getting down to their level to assist in learning. I don’t want a 17 year old that is lazy.

7. I show affection. My kids are loved and they get hugs and kisses all the time. I tell them I love them constantly.

8. We share. Sharing isn’t easy to teach but I try to share things with my little ones and in turn have them share with each other.

9. We read, listen to music, and crawl through tunnels. What I’m trying to say is we have fun. I try to make situations that aren’t fun better. My son has a music player that he loves and I will bring it when we go to Home Depot or somewhere generally boring.

10. We all live in a yellow submarine. Ha! No not really but my husband and I both have a very good sense of humor and even though these two munchkins give us the business we make the most of what we have each other and at the end of the day that’s all you really need anyway.

How to start…

When you think about how you expect your life to be, is it what imagined? Mine is not and that’s okay. I have realized that expectations are really the major issue we all tend to have.

Picture your desk filled with paperwork, supplies, and somewhere underneath is your laptop and a printer. You have all of this stuff and then one day someone comes and dumps all of your “stuff” out. That’s what becoming an autism parent has been for me.

Now my desk is cleared and I can see that I actually have plenty of room. I really do have all of the supplies I need and while some may not seem useful yet, they may come in handy later.

My son was diagnosed at about 2 years on the Autism Spectrum. People always ask me how I knew because our pediatrician was the least helpful person at the time. My son had almost every single marker and when he wasn’t speaking I just had this feeling. It was a good thing I went with my gut because now he is enrolled in school full time and is blossoming. We still have a lot of frustration, meltdowns and communication difficulties. But, the path we are on is going in the right direction.

While my desk has gained some clutter back it looks nothing like it used and that is just fine.

🙂