Our "Wish List" for the DTaP Clearing and a Few Updates on Noah

I am so thankful that we are finally moving past the bad weeks we had with Noah. I still am not sure what caused the issues we saw (vomiting, loss of appetite, intense stimming, a weird rash on his back, increase in sensory issues etc). Was it due to the Hep B clear we just wrapped up? Was it a virus? Regression? A mix of all? What I find to be the most interesting is that Noah appeared much worse (behavior, sickness) during our break than any time during the Hep B clearing. It got to the point where I was considering asking the homeopath to let us continue on with Hep B. I really do believe we will need to revisit this clearing again in the future.

He has not vomited since this past Tuesday. I started to notice that he would vomit when drinking his almond milk, specifically when I would add his daily vitamin c supplement to it. He has never had a problem with his vitamin c... he has been taking 500 mg a day for the last few months... but I googled the symptoms of too much vitamin c and in addition to the diarrhea I had heard about, vomiting and nausea can also result from too much vitamin c. I stopped the vitamin c and have not seen any more vomiting. I hope to start it back in a few weeks gradually. But for now I am giving his stomach a break.

His "food jag" seems to have resolved for the most part as well. His occupational therapist told me that a food jag is when a child limits his foods to only 1 or 2 foods. Noah was always a picky eater, he eats about 10 foods... I noticed over the last 4 weeks that he started refusing his bananas, yogurt, apple sauce, cereal, even his favorite chocolate pudding! Yikes. It freaked me out. Especially when I heard his little tummy growling and yet he still refused almost all foods. At one point I was lucky if he ate oatmeal in the morning and a cookie for the day.  Our OT gave me some direction on how to deal with it. The KEY was to make sure we were always changing the foods he did eat--- for example, every day in his oatmeal, I changed the time I fed it to him, the bowl I used... I would add different fruits in it each day to change the flavor... I would add almond butter, peaches, apple sauce and slices of banana. It did seem to work because within two weeks he was reintroducing other foods back into his diet.

We also have finally found a multivitamin that Noah tolerates. It is from The Honest Company and it is a powder that can easily be mixed in drinks and foods. So now I can at least know he is getting a supplement to help offset the lack of fruits and vegetables in his diet. And the best part is that the supplement is safe without any harmful ingredients, which is not the case for many children's vitamins.

Another HUGE development for Noah is that he has stopped using a bottle!!!!! SO EXCITED ABOUT THIS ONE!!!!!!!! We were able to discontinue the bottle use during his vomiting and he hasn't requested it. In other news, we just purchased a little boy doll for Noah hoping that he would connect to it better than the boy baby doll he has. It is cute, with crazy hair, and looks a lot like Noah. Noah loves his boy doll. He smiles lovingly at it, calls it "a boy", and just the other day he started moving his arm up and down and saying "Hi" and "bye". He also has given it hugs and kisses. So cute!

OUR WISH LIST FOR the DTaP Clear:

We still have a few more weeks before we start another clearing (we got an extension from our homeopath!). We will tackle the DTaP next. Here are the areas that I pray are healed with this clearing:

1) Eye contact- Noah goes through periods of amazing eye contact and then it stops. This is a hard one for me. Who knew eye contact was so important!? When he won't look at me I feel disconnected from him and I realize how much he is missing out on by not looking at people. I pray his eye contact improves during this next clearing.

2) Sensory issues-- this is a big one for Noah. Grooming and eating are big issues that we struggle with, all related to sensory overload. Brushing his hair, brushing his teeth, cutting his nails, bathing, washing his hair, eating are all impacted by this sensory processing disorder. I pray that this clearing helps these issues as well.

3) Developmental delay and speech- Noah still struggles to communicate... he is doing great with labeling and repeating what he hears but he struggles with using language to communicate. Echolalia is emerging. If I ask him a questions he will repeat back to me the last word. He still struggles to understand what people are saying to him. He also does not have much imaginative play.

4) Rituals/OCD behaviors--  this has emerged over the last 6 months and it is becoming a pretty big problem. Every song Noah hears he has elaborate rituals that he does to the music. A stranger may not notice him even doing it but I have realized that as soon as we get to a certain point in the song Noah will go to a certain area of the room, touch a chair and then move to another area and touch his toe to a spot on the area rug. He flips out when I disrupt this ritual. He also is turning in circles and doing side eyes throughout the house on a regular basis.

5) Insomnia- I pray that with this next clearing we will see some change with his sleep problems. During the Hep B it was a constant issue for us. I know this is a big area that needs healing-- he did not sleep for the first 15 months of his life. I pray that his insomnia resolves and he begins to sleep through the night.

I know this is a big list and may seem unrealistic to those reading. I just know that with God ANYTHING is possible. I am praying for miracles, for healing. I am trusting that the Lord will continue to direct our steps and lead us to the best interventions for Noah. I know in my heart that CEASE therapy is one of those interventions. I am certain if we continue on we will continue to see more healing and recovery.

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.

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.

Bouncing Back and ABA therapy

Noah is feeling better and thankfully bouncing back. He is very engaged with us, has great eye contact and he is starting to use his words again. He has also started playing with his neglected toys. One thing that is still lingering since he became sick is that he is grunting....constantly. We get frustrated because of the constant noise but also because it reminds us that he is unable to talk and he is stimming vocally. It is an ever present reminder of the symptoms of autism. His new speech therapist said that this could be his way of communicating with us... or it could be both stimming and communication. We must decipher between the two. If we think he is trying to communicate we need to label for him what we are doing or what he is wanting. If we think the grunting is serving no purpose but to provide stimulation we need to either ignore it or redirect it.

His ABA therapy has picked up in intensity. His therapist Lily has spent the last few weeks building rapport with him. Now she is increasing her demands of him and not giving in to what he wants. She is rewarding positive behaviors and holding out for the correct behavior from him. He has not taken well to this. My mom reports that his last two sessions are mostly crying. I am hoping it gets easier with time.

We also had our second meeting with the classical homeopath on Skype. She saw Noah for the first time and watched how he interacted with me and observed his behavior and his overall appearance. This helped her conclude that his constitutional remedy may be Pulsatilla. I researched Pulsatilla last night and WOW... it really does fit Noah! I picked out about 30 different characteristics that are true of Noah. So, I am excited to start this journey of CEASE therapy and classical homeopathy. We will begin in a few weeks. The plan is to do CEASE therapy on Tuesday/Thursday and then give the constitutional remedy on Saturdays.

And as always, we are trusting the Lord to lead us to the right interventions for Noah. We are having faith that He will take care of our little boy. We still have our emotional moments but we are maintaining much better than just a few months ago.

God Answers Prayers

I have had some wonderful news lately and I know without a shadow of a doubt that God is answering our prayers.

ABA therapy- we were on a waiting list that was 4 to 6 months long. I have been sooo upset at the wait time so I asked for a meeting with the director to see if she may be able to train us/provide advice of what we should do in the meantime. I met with her this past Monday. She is a BCBA and she spent a lot of time with me discussing Noah. At the end of our meeting she not only offered to train me and my family (for free!) to do ABA while we waited but she also bumped us up on the waiting list. We were told we only have to wait 4 weeks now, but I was just informed today it can start in 2 weeks!!!! This is a huge answer to prayer.

Financial Coverage- this has been one of the most stressful aspects for us- how are we going to afford the enormous costs of this therapy/treatment for Noah??? I was told last year that my child's insurance did not cover any ABA therapy. That we would have to foot the entire bill.... so that meant we could only afford the bare minimum..... so fast forward to today--- the counseling agency told me that many insurances are starting to cover this therapy and to check into it. I called not thinking much of this- and I was told that there is now an AUTISM BENEFIT to his insurance!!!!! What????!!!! I couldn't believe my ears! I still don't know what exactly this means but it is a good sign whatever it is. Any help is more than nothing. This is also a huge answer to prayer.

In the worst of times, God is still there. It may not feel like it, but then things like this happen and you just know that He has been there through it all. THIS was the hand of God. I know without a DOUBT in my mind that God has been with us through the tears, the heartache, the fear... He has heard my desperate pleas for help and He has answered.

My heart is full of thankfulness. This has given me a much needed boost and hope that good days are ahead. That things will get better. Thank you Lord.