One Year Ago Today...

One year ago today, my world came crashing down around me. My life, our life, has never been the same since.

That day, August 7, 2012, started off like any other day. I was getting ready to leave for work. My mother had just arrived to my home to care for Noah. She casually mentioned Noah's upcoming pediatrician visit and said to me "you should mention to the pediatrician that Noah is avoiding eye contact." Hearing this confirmed something deep inside of me that I had been brushing off for many many months. I had been uneasy about Noah for a long time, but I was dismissed by the doctor and other medical professionals on many occasions.

So, I went upstairs to my computer and typed into the Google search bar "toddler avoiding eye contact" and I was not prepared for what glared back at me----

AUTISM

My heart dropped. I searched frantically through the search entries, looking at all of the signs and symptoms of autism in a toddler....I tried to find any entry that eased my worry. But there weren't any. The more I read, the more I realized we had a huge problem. I was certain that Noah met all of the diagnostic criteria for a diagnosis of autism. I knew that very day what my son had. I kept this to myself because my husband and family would not have been prepared for this knife to the heart.

The agony that followed from knowing what my son had was nothing I have EVER experienced in my life. I called out from work for an entire week following that day. I could barely get out of bed (my family thought I had the flu). The grief swept over me......My only son had autism.... Every emotion poured over me: regrets, failure, fear, grief, and huge amounts of anxiety. I had severe depression and anxiety for over 6 months following this. And I continue to have bouts to this day. I cried all of the time- driving, at work, at home, in the shower, in my sleep even. I stopped eating. My husband had a hard time coming to terms with the possibility of his son having autism. My mother was in denial and we were constantly at odds. Everyone handles their grief in different ways. I handled it head on, they did not. This just made this time even more difficult for me.

Looking back over this last year, so much of it I cannot remember. The pain was so great that I don't recall much, except for key events and services that I fought to get for Noah. One thing I do recall vividly, is this intense DRIVE that took over my body...  I felt that I MUST find a way to pull Noah out of this dark hole that was consuming him. This drive propelled me to immediately start implementing interventions, finding help and services for my son. I fought for as many services as I possibly could get for him. Early Intervention was implemented (at my insistence- the pediatrician didn't think to do this either!), a diagnosis was made shortly after EI began and I worked hard so that Noah could get ABA therapy and his Medicaid Waiver. I hit dead ends, red tape, no answers. I knew more than the case managers, the doctors, the so called specialists- how can this be? This scares me because these "professionals" are supposed to help parents when this happens. I just did not find this in my experience.

I have been a social worker for many years and I have fought many fights on behalf of my clients. I have to say, this fight-- navigating through this broken system of services for my son to get him what he needed was the absolute HARDEST fight of my life. This just shouldn't be....

In February, Noah began ABA therapy and CEASE Therapy. This was a turning point for our family and for Noah. CEASE therapy removed the fog Noah was consumed in and ABA therapy helped Noah catch up on many things he had not yet learned. After every dose of Hep B, we saw aggravations and gains. By May, Noah had begun to talk. This was such an answer to my prayers.

I can now say that I see a distant light at the end of this tunnel. We have much farther to travel but I have hope to one day leave this dark place and see the day when my son is healed and fully recovered from this horrible condition. CEASE therapy has been the main intervention we have seen the most gains from. It is helping his body heal from vaccination injury. It is removing toxins that are hindering healthy development.

I must also say that the Lord was with me throughout this year when most of my friends and family disappeared. He was there comforting me in the darkness as I cried my heart out. And He is here still giving us the wisdom and strength to face each day and to have faith for our future.  I am so thankful to Him for his comfort, guidance and provision. I am so thankful for His healing. He is healing my son and he is healing my family.

Back In the Saddle and a Few Updates

I have had a few days to process my feelings, reflect on what occurred on Sunday and I have allowed myself time to cry... I am now ready to hop back on the saddle. I must do this. I have to press forward towards recovery and towards health and healing for Noah and for my family. I refuse to let autism rule my life or win. I refuse to allow it to take me and my family under.

In other news, I have evaluated where we are at with therapy and with interventions we are trying. We are starting to get comfortable, complacent.... Noah has been doing well, and even though we don't mean to, we start relaxing a bit when we see so much progress. I know that we have missed amping up our therapy routine and adding new, helpful interventions. The last few days I have looked through books and materials and plan to add new interventions and techniques to our daily routine with Noah. I am going to really put more of a focus on eating, bathing, self help skills and language. I will also be pulling interventions from the "verbal behavior" ABA approach.  Noah's diet is minimal and he doesn't eat many things due to his sensory problems. This is one area that we put on the "back burner" because we had so many other issues to tackle and we need to revisit it. Bathing has always been a problem... but it seems to get worse every bath we do. He used to sit in the bath for at least a few minutes and then cry until he got pulled out... now he won't even sit down. So, we must work on this and figure out a way to make him tolerate it.

Other updates: Today Noah had his first meeting with the school system to be evaluated for special education preschool. He won't have his official evaluation until September....

And thankfully, the Medicaid Waiver, has finally started covering personal care for Noah, which allows my mother to be paid by Medicaid for his care. This is huge and such a blessing. This frees up money so that we can afford ABA therapy costs. We pay almost $1000 a month for ABA, which is only 6 hours a week! We are so thankful for all of our blessings. I know the Lord is providing for us during this time.

Days Like Today........

Days like today.... Remind me how far we still have to go and how much autism has impacted our life. I have felt so strong these last couple months and then one family get together turns me into a mess. I had to deal with family members today that don't care about what we are going through with Noah. They talked to each other about their nice normal lives never once asking us how we have been doing, or how Noah has been coming along with therapy- Not one question! Noah, even though he is more aware, cowered in a corner as they looked at him like he was a zoo animal and tried to get him to engage. His cousin who is 2 months older was talking up and storm and playing with all of his toys and communicating easily with relatives. My heart ached as I compared him to Noah (I know that I shouldn't, but I did)....In that moment, I felt as if all of our hard work and all of Noah's progress didn't seem so big after all. 

After everyone left, I cried. I wonder if our lives will ever be the same after the diagnosis of autism. I wonder if I will ever feel truly happy again. I look at pictures of myself and I don't know the person I have become. I don't even look like myself anymore... I look exhausted and depressed, where did I go? 

I feel like this family event, my birthday party (of course!), ripped away the scab where I was healing.....and I am raw.....once more. 

Week 14 and 15- Hep B Clearing with CEASE Therapy

Since Noah had such a strong reaction to the 2 doses of Hep B 200C we had to put everything on hold this past week while his little body got better. I have to say this last week has been the most difficult yet of this clearing. We are still not sure what exactly was a detox reaction and what was sickness... all I know is that is was ROUGH. Vomiting, fever, ear infection, diarrhea, insomnia, congestion and cough, along with behavioral issues (biting), irritability and regression in language and lack of eye contact. I had a bit of a meltdown myself, especially when I saw the regressions. It was a hard week. And, I am so glad it is over and we are moving on.

This week we moved on to the 1m dose of Hep B. We are only dosing once this week. I am hoping for minimal aggravations and huge gains. Noah has rebounded and he is now doing great. Tons of language-- he is trying to communicate constantly which is so nice to see. He is understanding more and more language. He is doing awesome with eye contact once again and he is present and not in a fog.

I will try to do another post later this week to give you an update on how the 1M is coming along!

Am I in Denial or Am I Trusting God?

I had a thought the other day.... Am I in denial of the reality we have in front of us or am I just trusting God? I have just felt really calm lately regarding Noah's condition. I mean, I shouldn't be calm. I should be stressed out, emotional, upset, afraid of the future... but for some reason I am not. Most days I feel a deep peace.

I have read the statistics on autism and it isn't pretty at all. Recovery is a small percentage, marriages most of the time fail, people go bankrupt, children never leave home and cannot care for themselves. The list goes on and on. I know that this may be our reality one day but I guess I am just NOT accepting this future for us. I REFUSE to become yet another statistic. I will continue to fight for Noah's recovery with every breath left in my body. I will continue to fight for my marriage and my health and our finances. I am not going to let this condition called AUTISM destroy our lives. I am choosing to live with JOY when I shouldn't be doing it. I am choosing this mindset every day. I am trusting that God will direct our steps when it comes to treatments and interventions for Noah. I am believing that God has a wonderful plan for Noah, and for my family and that He will use this horribly painful time in our lives for a deeper purpose.

I guess I am just trying to say that I am making a choice to have HOPE-- I am clinging to it.  I have to believe that healing and recovery are possible for our little boy.

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.

The School of Autism- The Degree I Never Wanted!

It has been about 6 months since we realized that Noah had a problem.  These months have been a mixture of fear, grief, exhaustion, sleepless nights and tons and tons of research and fighting to get services for our son.... We have been in survival mode these last 6 months. Our priority has been helping our little boy.  And we have neglected ourselves in the process. I stopped caring about myself- haven't worked out in ages.... stopped taking my vitamins..... haven't paid attention to my diet.... I haven't practiced the self care that I preach to other people in the work I do. The School of Autism has exhausted me to the core. I am so drained when I get home I barely have the energy to do one-on-one work with Noah.

I know that I must take care of myself so I can care for Noah... I know this.... but I am not doing anything about it. So I am going to start small. I am going to drink at least 6-8 glasses of water a day and start taking multi vitamins again. I also will read a devotional each day as part of my self care. I hope eventually I will have the energy to work out, but this will do for now. Who knows, I might go really crazy and get my hair cut or get a massage this weekend!

~~~~~

In other news, Noah is doing well. He is very present and engaged with us. He prefers to be with us rather than on his own. He is pointing independently now (not to communicate though). He is doing gestures to songs (head, shoulders, knees and toes). He loves to stack blocks and complete puzzles. We catch him humming to songs he listens to each day. He is doing better with eye contact. He still struggles a bit with it but it is much better than a few months ago. 

We are working on pretend play (he doesn't quite get this), imitation of words, sounds, gestures... we are also expecting him to communicate in some way with us when he wants something. We want to hear him try to say a word, use a gesture like pointing or use sign language to tell us what he wants. We are working on using a spoon and cup (almost has the spoon down) and having him help with undressing himself (not there yet). We are also getting him used to drawing but he isn't enjoying it yet.

We are moving in a positive direction. It may not be at the rate we would like to see but we are getting there. Slowly but surely. 

Does Autism Control Our Life?

The answer is yes. I was thinking about this today. Every single part of our life is impacted/affected by autism.

Our extracurricular activities (pretty much non-existent), our finances (have to be a on a strict budget to pay for all of Noah's therapy), our food choices (can't let Noah watch us eat gluten and dairy foods), our relationships (marriage strained, no time for friends, local family not very supportive).... our days are governed in many ways by autism. We can't just relax like a typical family...go to church,  go out to dinner, watch movies, enjoy shopping because our son has difficulty with these things. When we are home we are supposed to spend every waking hour with him- engaging him, playing with him appropriately, redirecting his autistic behaviors, not allowing him to stim for too long... making every single minute educational for him. A typical toddler is learning from people naturally. Noah does not. He does not have any internal desire to look at our actions or faces. He is often in his own little world and we must constantly bring him out of this world and keep him here with us. It is exhausting to be honest with you. But, what is the other option???

So, I look forward to the day where I can say my life isn't controlled by autism- I am not sure when or how this will happen. I am praying for a miracle- I am praying for complete healing for our child. I am praying for recovery. Maybe one day, Autism will be a distant memory... a horribly sad, difficult time we went through. And if for some reason God does not allow full healing or recovery for little Noah, I pray to God that He helps us learn how to live our lives in spite of this diagnosis. I pray that we don't lose ourselves, our dreams, our marriage, our health and finances to this disorder. I don't want to be another statistic. I want to rise above this diagnosis and live life victoriously. This is my prayer.