Preparing Myself

I took Noah to Gymboree today. He is still in the Level 3 class which has 12-16 month olds. He is 22 months old so he stands out. He is already a big boy but when he is with these children he towers over them. I wonder whether it is better for him to stay in a class with these younger children and work on communication development or whether he should be challenged by children his own age and observe their behaviors.... I plan to ask our therapists about this. I asked his Gymboree teacher about when he will be ready for the next class. She hesitated.... she told me that the last few classes he is "acting" like all of the other children. So, we are seeing some progress. I just don't know if it is realistic to think that he is going to act just like children his age. It may not happen. If that is the criteria for moving to the next class we may be waiting a long while.

This got me thinking about something that really bothers me.... Right now we can hide what is going on with Noah to an extent. But not for much longer. His age hides the disability he is struggling with. Very soon however it will be obvious to everyone that he isn't like his peers. I am dreading his second birthday. I know that sounds horrible. It will just be a reminder to me that he is struggling. That he isn't able to say words like other two year olds. That he may not even comprehend that he is getting gifts or pay attention to his birthday guests. I am preparing myself for this time to come. I know it will be so hard for me and my husband. It is hard enough that we are grieving but we haven't had to deal with the public's opinion. This will come soon.

God, my heart aches for my little boy. I want him to be healed. I want him to be whole. I want him to be happy and healthy. Lord please hear my desperate plea.

I'm having a hard time...

There are days when I feel okay and ready to do what is needed to help Noah.

These last few days... not so much. Grief, sadness, fear and regrets creep up on me and I feel paralyzed.

I have a hard time seeing the regression and difficulties Noah has with learning. We go over the same words and activities every day... over and over and over and over... and some days he gets it, other days he acts like he forgets. He struggles to spit out words... it is painful to watch it. There are days when he zones out and I feel like he leaves us. I don't know how to take him out of this fog he is in.

I want so badly to give him the therapy he needs, the hours he needs.... but I am hindered by finances and no insurance coverage for this therapy. I don't know how we are going to afford this... I really don't. His diet alone is costing a fortune. I leave the grocery store with just a few bags and it is almost $100 a trip. The DAN! doctor consultation visit is almost $700!

It is a fight just to get him help- waiting lists everywhere (for ABA and speech therapy)... 4-6 months of waiting! That is too long when early intervention is key. Then, while you are waiting, no one is willing to train you to do the therapy yourselves. You have to read books and try to figure it out.

And then there is support--- as soon as my friends and family found out about my situation with Noah, many disappeared.... I have never felt so alone in my life. I don't really understand why... maybe they just don't know what to say to me or they think I am too busy to be bothered. It is very hurtful. My sisters... my brother---- where are they? Why haven't they just called to check on me?

A few nights ago I looked at all of Noah's pics since his birth. I noticed that he went from a smiling, interactive, happy child to a child that rarely makes sustained eye contact, zones out and will no longer smile at the camera. The change occurred from 9 months to 12 months.  What occurred during this time??? Shots at 9 months and then 3 ear infections with 4 rounds of antibiotics....

So, I am now struggling with regrets and with self blame. Should I have not received the flu vaccine while pregnant? Should I have not had as many ultrasounds? Should I have limited Noah's TV time? Should I have allowed him to be around more children early in life? Should I have not allowed vaccines? Should I have questioned the overuse of antibiotics? Should I have picked up on these changes in Noah and intervened sooner? Would this have changed the course of this disorder and prevented it?  I don't really know how not to blame myself for this--- I was supposed to protect him and make sure he was doing okay and I failed.

I know that I will have better days and that I will look back at this time (and this journal entry) and feel differently.... I just don't know how this is going to pan out. I really don't. I want to trust that God is going to handle it... that He is going to provide.... but I don't feel it right now. I don't know why this would happen... especially to little Noah. He is the sweetest little boy and he deserves the best in life.

I am praying for the Lord to give me peace in this storm

Grief, Self Care and Trusting God

Every since we suspected our son of having autism, I have struggled with waves of grief and severe depression. I know that grief is a part of the process in coming to terms with this. I know that I must allow myself time to grieve and process these feelings I am having. I also know that I somehow have to take care of myself so I can care for my son. If I can't take care of myself I will be of no use to him. 

So, I am allowing myself time to cry. I am talking about my feelings to close friends and family. I reached out to my doctor for antidepressant. I started this blog to help me process what I am going through- an outlet of sorts. I plan to attend a support group in the near future. I am trying to take one day at a time. I am praying ALOT.

I am a Christian. And this event has greatly tested my faith. I have questioned God. I have been angry at Him- Why me? Why Noah???? I don't feel strong enough to carry this load. I know that He will not give me more than I can bear.... but I feel like I can't manage it.

I have to remember these things in my darkest hours: God created Noah for a reason. He is perfect and beautiful in His eyes. Noah has a purpose. This autism diagnosis isn't a surprise to God- it is a surprise to me. God gave Noah to me to care for and I am the right person for the job. He will help me and my family. He will bring us resources and people to help. He will take care of us because He loves us.

So, that is where I am at right now.