About a year and half ago I hit my wall. I was under a huge amount of stress. David was working from home but he didn’t have an office so I had to try to keep two three years and a one year old quiet. Not happening. Daniel was at his worse, every day he was flipping out. While we were in another state, we couldn’t find a church home or friends to connect with so for almost five years I was with the kids and David. We had many connections with multiple churches but we were not connected. I didn’t get out of the house. It was very hard. So when we moved here I was desperate to meet people and get out.

No one gets it.

We started going to a church it seemed good at first. Let’s just say it wasn’t the right fit for us. People really seemed not interested in what was going on with us especially Daniel. I would try to tell them but it seemed like they heard the word “autism” and that was it “we are praying for healing”. So I started just saying he had “sensory issues”. It was just easier. I wanted him to be healed but I didn’t really understand what that meant. For me I just wanted his pain to stop and my pain to stop. I couldn’t share with anyone there what I was feeling. When I tried to share with them what life was like for us and they were very uninterested.

I was misunderstood, unheard, manipulated to feel as though I wasn’t “spiritual” enough, and really hurt. I actually take responsibility for most of this because I was trying to get people to understand who are not capable. Not because they are not intelligent enough but because they operate in a system that is not the same as mine. I tried to get them to understand my system and they don’t want to they are perfectly happy with their system and either you get on board or you get out. So we got out.

This is how I have felt at these times with Daniel.

My screaming child, what do I do?
I tried all I can to help you.
Your pain so deep.
Oh, God why can’t he just communicate?

Tormented by things I cannot see.
How do I comfort you please, tell me please?
There is something wrong I know, I can see,
just give me the answer so you can be free.

My heart is breaking before my eyes.
My little boy as he sits and cries.

Nothing I can do.
Nothing I can say.
He is tormented each and every day.

I can’t comfort my little guy.
I am getting angry too; what do I try?

No one understands.
No one feels the same.
Watching my son in so much pain.

God help him, help me!
I can’t take it anymore.

What do I do?
How can I say, I just can’t take this one more day.

He is my son.
I love him so; but something has got to give;
I have got to know.

How do I help him and me today?
Give me the ability to go on another day.

Tired and weak.
So deep is my cry.

Help my child be at peace today.
Take away his pain and fears so he can play.

Just let him be happy let him have fun.
My little boy I see in his eyes;
glimpses of joy and laughter they come.

They give me hope I know he is in there;
waiting to come out with no more fear.

My little boy will be free and live a most joyful life;
full of laughter and peace.

All is quiet the screaming will cease.

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We took Daniel to a food clinic and they wanted to do group therapy we knew that wasn’t going to work, we just knew. He never did well with group setting with his peers. We are very thankful now that we did not do it because the therapy would have been quite stressful for him and could have made things a bit worse. Still I knew in my heart there was something more going on.

I needed an answer.

David started researching his behavior and recognized Aspergers immediately.  David had always felt he would just come out of most of this stuff. And he was right in a way. All I heard was “autism” and I was scared. We moved and found another doctor who knew right away that Daniel had Aspergers, her nephew was AS. She did send us to specialist and therapists. We were able to get him started in speech and occupational therapy. This only lasted about 8 months then our insurance ran out so we had to stop. He made huge progress. They gave me resources and information to help Daniel and work at home.

What now?

I would like to say that  I was a saint and did everything to find out what to do but I didn’t. I went into denial. I was like ok, so he shows these signs but if I pray hard enough it will all go away. If I just work on his therapy  as much as possible it will stop. That didn’t work. I would see huge progress and then he would go ten steps backward. It was very confusing and painful. There was a bigger issue though, I was being very selfish. So what now? I tried to escape.

I have a lot more on the escape issue but it will be several posts that I do. It took a while but I finally moved forward but it took a painful experience and a long look in the mirror.

Happier Days!

I am happy to say that Daniel is still making huge progress. He is now eating crackers and a variety of crunchy foods. He tries foods that I never thought possible. He may not eat them regularly but he takes a notion and just picks it up and tries it. I usually set out a bowl or plate with the same foods we are eating and sometimes he eats it sometimes he doesn’t. Working with him has brought him where now he is speaking in sentences not as fluent as his sister or brother but he is communicating which has made our world a much happier place.

Progress yes!

Daniel has come a long way just in the past five months. It was only a year ago that he started feeding himself. He is starting to dress himself, do interactive play, participating in art class, talking to his sister and brother. Just the other day he looked right at me and said “I love you”. I have poems I wrote to express that moment.

Everyday gets better and better.

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From the beginning I had this feeling that something was different with Daniel. I couldn’t place it but I felt it. He would just scream and scream and I did everything I could think of to help him. He was extremely colicky. But he would only cry at certain times, he would throw his arms up and make this sound that was something I never heard before, when he was cold. Now that I look back I can see he would get upset at many things that had to do with sensory issues.

No chunky or crunchy food!

He began to walk not crawl at 8 months old, he actually began to run not walk. He wouldn’t eat chunky food, he had no desire. He would not drink from a cup still does not fully but we have had major progress in this area. Ariel didn’t seem to have any of these eating  problems. He wouldn’t look at us. I would call his name over and over again. I knew he could hear us. He would look sometimes if there was a sound or if I said his name, while he was playing he would once ever so often smile a little. (He did have a hearing test later, no problems) Hardly any eye contact. Since Ariel didn’t show any of these signs I thought maybe it was because he was a boy. I had never been around baby boys before.

Then there was the meltdowns.

I noticed that he would have melt downs in the store and then it would last for a long time at home. As he got older the only thing I could do was let him be in his room. I became pregnant again and it took all my energy. My little Joshua didn’t give me the great pregnancy that the twins did. This little guy made me sick. I blew up like a balloon and got vertigo. David had an office job at the time that was very stressful for us both so that added to the dynamics.

Please stop screaming!

Daniel would just scream, sometimes he would scream all day non stop. I would try to give him everything I could, do whatever, find toys, put on shows anything but nothing would work. When David would come home I would be so frazzled that I would just break down. There was nothing I could do. Then there would be days where he was perfectly fine. It made no sense. No rhyme or reason. One day he would love something the next day he would hate it.

Anything that spins.

He only found happiness in anything that would spin. So I found everything I could, all things that spin. That made him happy. He was almost two and still not eating solid foods. We told his doctor and he didn’t think anything was wrong with Daniel because he seemed very social. He was kind of social; he would make eye contact sometimes, smile, and look at people sometimes. To on lookers or other people he just looked like a busy toddler who wouldn’t sit or behave. To us we just thought he was like us, he didn’t like being around a lot of people. We just thought we didn’t like people or something, well that wasn’t really the case we just had to come up with some reason why we never fit in with others. That seemed the easiest route.

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