Monday, December 31, 2012

Goodbye 2012! Welcome 2013

This has been THE absolute hardest year of my life. Without a doubt. In addition to selling a house and moving, we watched our only son go inward and eventually get diagnosed with autism. The last 5 months are a blur to me--- fear, anxiety, depression, grief, anger, panic..... questioning God, losing faith, feeling completely alone.... I constantly got in arguments with those people closest to me- I was taking my feelings out on them.

Don't get me wrong, I am still struggling with this new reality we are faced with. But something inside of me has changed. I don't quite know what it is. I just have felt different these last few days. I feel like I am preparing for the fight of my life....for a great battle. But I have a sense of calm and peace in this storm. I have a game plan. I have read and researched til I am blue in the face. I am on multiple waiting lists for ABA therapy. I have an EEG scheduled and a doctor's appointment lined up. I have a Medicaid Waiver application processing. I have an online ABA training program selected while we wait for ABA to start. I have planned a budget just in case we get no financial help. I have started Noah on GFCF diet and have started to add supplements as well. I am choosing to trust God.

I don't know why God has decided to allow this. I just know that He has. I will do everything I can in my power to help Noah and when I have done everything---I have to trust that God will take care of the rest. I am choosing to TRUST. I am choosing to have PEACE. I am choosing to have FAITH in the unseen. I am making the choice every minute. Fear continually creeps up inside of my heart and I have to battle it... I have to constantly choose to TRUST God. He loves Noah much more than I do and He has good things in store for him... and for us.

So I am saying goodbye, farewell to 2012. I am welcoming this coming year of 2013. I am praying for a good year. Full of progress... resources.... help.... support from friends and family.... time with family.... enjoying our little boy..... a year full of learning and growing... a year of TRUSTING God with Noah and with our lives.

Sunday, December 30, 2012

Update- Trying to focus on the positives!

There have been a few new things to happen this week with Noah.

We have been giving him Culturelle probiotic over the last two weeks. Then, out of the blue, he began to break out in a stomach rash and had difficulty at night sleeping, and I found him scratching at his stomach (and waking every 2 hours).  There have been no other changes to his diet so I am thinking that this is a yeast die off. I have read that you can have rashes/itching when there is a die off.  I immediately cut the dose in half and it has started to heal which is good.

I also added Cod Liver Oil to his routine. I mixed it in with his Gluten Free oatmeal and he didn't seem to notice (so relieved!). I have heard great things about this oil- doctors have found that it improves eye contact, and lessens visual stimming. I can't say I have seen anything yet but I just started this yesterday.

Some of his stimming behaviors have disappeared recently (pacing/side eye glancing) and others have re-emerged (hand flapping, head shaking).... He has started to fixate on electronic buttons (pushing them over and over and over). He has been less verbal this weekend too (not using his normal 8-10 words) It is just so hard to tell what is going on with him half of the time and what is causing what. I feel like a detective! A really bad detective! It is just a guessing game.

I started getting discouraged seeing these new behaviors pop up.... I have to remind myself that he is going to have regression from time to time. That he will take steps backwards and then steps forward... as long as the trajectory is positive that is what I must focus on.

I looked through his daily journal over the last 3 and half months and I could immediately see how far he/we have come. His words have increased. He enjoys playing with typical toys now. He is warm and engaging more than he is not. He doesn't zone out the majority of the day anymore. He isn't fixating on one thing all day like he used to (balls, spinning wheels/bowls). He is tolerating social settings with other children (Gymboree). I have to make a choice to focus on the positive----there are many things/improvements to be grateful for.

Tuesday, December 25, 2012

Little Victories- Merry Christmas!

I have been trying to find replacements of Noah's favorites food with gluten and casein free items. This is much harder than I anticipated but we are making some progress.

I purchased gluten free oatmeal (glutenfreeda from and snicker doodle cookies (Life is Good brand) and Noah loves them!!!! Victory! He also likes the GFCF pudding (Zen brand) I found as well as the GF chicken nuggets. I am going to continue switching out foods until we completely eliminate gluten and casein from his diet.

In other news, we are starting to see a few breakthroughs over the last few weeks with his behavior. He appears to be much more engaged with us than he used to be. He practices giving good eye contact with me (it is so funny because he is making a concerted effort to do this, like he is being timed) and he is enjoying typical toys. He still stims on car and truck wheels but not to the extent he used to. He is starting to say "Bye" and use the gesture. This is HUGE! He has never done this consistently. Now we are working on using it in the correct context. We are also working on saying "Hi" with the gesture. As far as socialization, he is handling Gymboree classes better. He doesn't cry the entire time we are there (yay!) and he is tolerating some of the activities they do on the mat.

I am so thankful to the Lord for these encouraging developments.

Merry Christmas!

Tuesday, December 18, 2012

My To Do List

Here are the areas I am working on now to help Noah:

1) Find a ABA consultant/therapist who will be willing to do some basic training with me and my family while we wait for therapy to start (4 month wait)

2) Find a DAN! doctor who will let us pay privately or who will take our insurance (our local DAN! doc will not take our insurance or allow us to pay privately)

3) Read/Research as much as possible on treatment strategies until we find someone to train us

4) Find a multi vitamin that Noah will take

5) Completely eliminate casein from his diet- then Gluten

6) Work on structure- with his daily routine, with our home

7) Start giving Noah fish oil and probiotic

8) Continue to have him attend Gymboree play groups 2-3x/week

9) Rule out other medical issues- metal poisoning, deficiencies, possible seizures

10) Apply for Medicaid waiver

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.

We just received a diagnosis for our son Noah

This is my first entry.  I am starting this blog for a few reasons.... to help me process my feelings related to this journey. To document my son's progress and recovery. To meet others that are going through this situation as well.

My 19 month old son Noah was diagnosed with autism spectrum disorder on December 11th, 2012. We have been concerned for quite some time. Last week the doctor confirmed our worst fear. Looking back, I had a gut feeling something wasn't quite right. As time went on I could see the differences between him and other children his age. His cousin, who is two months older, was always very interactive/social. When they spent time together I could see a huge difference in their behaviors. I tried to dismiss my feelings- telling myself that Noah had his own personality and quirks.

Here are some of the behaviors we noticed early on:

9-12 months- lack of eye contact. more interest in objects than people. loved spinning items. closing/opening doors. started daydreaming a lot/"zoning out". paid a lot of attention to details on toys (textures, specific parts). would often stare at lights, fans. shaking his head left to right (like he was saying no)-he would do this at bedtime but we were assured that this was normal.

When Noah was 15 months old,  my mother happened to mention that she was concerned that he wasn't making eye contact with her and that this wasn't normal for a child this age. I immediately went online to do a search on google- up popped all of this information on autism. He had many of the red flag symptoms...

We immediately went to the pediatrician who made a referral to a developmental pediatrician. We were put on a 4 month waiting list and then referred to the early intervention program. He has been receiving one hour of occupational therapy since that time.

Some of the behaviors we see now at 19 months:

eye contact is sporadic
doesn't respond to his name often
stimming behaviors: shaking his head left to right, pacing, hand flapping when excited, spinning wheels, walking on toes from time to time
high anxiety around other children/social groups
does not point or wave
food aversions
delayed speech- says a few words but not purposeful words (doesn't say mama or dada or baba)
zones out

So what is next??? I am trying desperately to get him additional therapy and services. I thought it would be easier now with a diagnosis but I was dead wrong. I am running into brick walls. Waiting lists for 4 to 6 months. Financial limits, no insurance coverage for ABA. No parental training while we wait.

It is just so frustrating---- It is hard enough to receive this diagnosis, and it is made even worse when you can't get him the help he needs. I have purchased books, videos and will educate myself and family until I find training and help. I will keep calling and seeking help. I will keep trying for him. I don't have another choice.