Words from me to you

Dear Son,

I have watched you grow from before you were born. I have been with you through each step of your journey. Somedays I have cried tears of anger and sadness and others I have cried tears of joy and pride. Today though I did not cry as I watched you decided to pull a wall around you and your world.

Sunday morning you woke up and decided you were not going to speak. You see, for me this hurt. I wanted to scream at you to speak. I wanted to shake the words out of you. Those words are there, yet you choose not to use them. We have spent hours upon hours working to get to your words and here you are five years later locking them up inside you.

I know you don’t understand why I am frustrated right now, but I am. I hate watching you pull yourself into this world where only you know what is going on. You lose all eye contact when you do this and it scares mommy. I feel like I am losing the little boy I know when you go to this place.

I think it would be pretty cool if you could take me to this place with you. I know it’s got to be pretty amazing since you have been going there more and more these days.

Son, I know you don’t understand but Mommy misses you so very much these days. I am learning to accept that this world of yours is a safe place and that you will go there when you need to. I am learning to accept that you are not gone, rather just handling your thoughts in a way that you know how. Mommy does that too, I just don’t have any one to say “I wish you weren’t there” to me.

I can’t promise you I will always be the one who is okay with you going to your world, but I will always be the one who loves you no matter where you go or what words you decided to use and when.

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Little Girl

ImageIn 2010 I brought home the most beautiful little girl. She had a mind of her own from the start. She was born three weeks early. She was a little yellow, and a little under weight but healthy and all mine. I watched her meet all of her milestones up until she was a year old. Then I watched her milestones slow down. I watched my beautiful little girl lose the few signs she knew, I watched her babbling stop and heard her become silent.  That is a parents biggest fear. 

At 18 months, I saw so many signs in my little girl. She was just like her brother in so many ways. She didn’t enjoy interacting with her siblings. I thought this was because her brother has social skill issues, that if I put her in preschool this would change. So I spent money I didn’t have to ensure that she had social interaction with her peers. I hoped that the signs I was seeing were not leading me down this road once again. 

She started flapping, she started lining up her toys. It looks like it would be normal until you look closer. We joke that little girl makes her lines so pretty,  yet inside I am crying NOT AGAIN! YOU HAVE TO BE FREAKING KIDDING ME! She has amazing eye contact and is social with adults and children older than her … they say those two things disqualify her for an autism diagnosis. This also means we get no services.  She is one point too high in two areas for help.

I have spent hours fighting to get her therapy and even more hours working one on one with her while the older two kids are in school on speech sounds. Around two and a half we got speech sounds. Then unintelligible single words with gesturing. These things didn’t happen over night, but after hours of work.  For every step we took forward, we would take a few steps back as well. 

This past week we have seen a huge development. Spontaneous speech. Thats right, not just echoing, but actually words with intent. We also have had a lot of functional echoing. This makes me hopeful. This reminds me that gains are not accidents but a result of hard work and dedication. Even if lil girl loses her words again, I know they are in there and one day I will hear them again.

 

A mom’s thoughts

We can’t always be on our game. We all have moments that we wish we had said something different or done something a different way. Tonight, well actually today, was my day. 

Little man had a rough day. His Speech Therapist had to cancel his session at the last minute. We were already at the school when she came out to tell us she was stuck in a meeting. He shut down. Lil man covered his eyes and pressed his face into the couch in the office of the school.  Normally he is pretty good about changes in routines. The exception to this is when I don’t have enough time to let him know of the change. 

Wishing for normal …

Of course, like many other children on the spectrum, this one upset in our day set the tone for the rest of the day. It was rough. I wish I could have taken a day off from the stress that this type of upset causes. 

Wishing for normal …

While we were walking out of the school the bell rang. Both little girl and lil man covered their ears. Lil Man stopped in the middle of the street, he froze while little girl ran in the middle of the street to escape the noise.  I am only one person. I need more hands to react to each of their needs. They both were bothered by the noise, but both of them reacted in completely different ways. 

Why can’t they regulate …

Wishing for normal …

To help ease the stress, I took them to get pancakes. They love their pancakes and it seemed like a good idea. Once we got home it was constant fighting. The two of them were physically hurting each other. It breaks my heart when it gets to this point. I don’t want to keep them away from one another. I want them to interact, but I also have a responsibility to each of them to keep them safe. Luckily they started to get along a little better after I was able to get them set up with an activity. 

Wishing for normal …

After lunch lil girl took a nap and lil man laid down with me for some cuddling. It was great, except he stimmed the whole time. Then someone decided to ring the doorbell. It’s not like it was a random person, the girl I tutor has been told not to ring the doorbell because it causes the dog to bark which makes the younger two cover their ears and screech. Yet she still rang the doorbell. 

Wishing for normal …

By the time hubby got home I was tired and stressed. I wanted to check out. I needed to clear my mind, but dinner needed to done and so did baths and bed. Luckily that part went smoothly. 

Finally something normal. 

Here is where I made my mistake … I voiced my thoughts. I said what no parent should ever say. I told hubby I just want a normal. I want out of this loop of melt downs and tantrums. I told him a normal child wouldn’t have their entire day thrown off because they didn’t go to speech. A normal child wouldn’t screech because someone laughed too loud in the car. A normal child would be able to function despite a change in their routine. 

I JUST WANT NORMAL

Then came the look. I hurt my family with my thoughts. My unvoiced demons came out. I can’t believe I did that. I know better, normal is a setting on a dryer. Or so they say … 

I have normal, our day is our normal. My son and youngest daughter struggle with the same things I struggle with. I can’t blame them for not being able to deal with last minute change. I can’t even deal with it. I however am 30 year old. I have had many years of practice to develop my coping skills that allow me to function in the “normal” world. 

My children are doing the best they can, and I needed to see that look on my husbands face to realize that no matter how much stress that this life brings us, it is our normal and my kids will learn to cope in their way in their own time. 

I have normal, We do function, We do regulate, We do the best we can.