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.

EDCD Waiver update

I received word today from the Department of Social Services that Noah's Medicaid application has gone through. Woooohoooooo!

He is now receiving Medicaid through the EDCD waiver. The worker has advised me that I have 30 days to start utilizing the benefits of the waiver. If we do not begin using the benefits, he will lose it at the 30 day mark. I will be calling a service coordinator to begin the process of locating a respite provider. I am also praying that this waiver, and having Medicaid, will allow Noah additional hours of ABA that we currently cannot afford on our own. We are paying out of pocket for 6 hours of ABA/week (which is very costly---at a discounted rate we are paying almost $1,000/month). The doctor recommends that Noah should receive at least 20 hours a week of ABA, so we are having to facilitate the remaining hours of therapy ourselves. It is hard to do. We are usually exhausted at the end of our work day and we don't give 100%. We are trying to do our best but it would be such a blessing if this waiver allowed Noah some more professional ABA services. Either way, I am just thankful to the Lord for His provisions. At the very minimum, this waiver will allow us some much needed respite and support. We are grateful!

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.

Speech Therapy and ABA have begun

We have had a pretty busy week. Noah started attending his speech therapy this week. And today, he had his first ABA session in our home. His ABA therapist Lilly is awesome. I think he will work well with her. 

She was here for two hours- He cried for the first 45 minutes but then calmed down and allowed her to be around him and play with him. This is pretty big. It takes Noah forever to warm up to new people or new environments. When I began taking him to Gymboree, he literally cried every time he was there for over a month and a half. When we were attending church, Noah never got used to the church nursery.... he cried and cried for months (4 months!) and then we gave up and stopped attending. It was just too draining to deal with. So, I am very hopeful that Noah and Lilly will work well together. This is a good sign and I am soooo excited about starting.

For Speech Therapy, they have suggested that he receive ST twice a week. The speech therapist feels that we should introduce PEC cards for communication. I am just concerned that it will allow Noah to not use his words and rely only on cards/pictures. I have been assured by more than one professional that PECs helps with communication and will "bridge the gap" until a child's language increases. 

Areas that we are waiting for/pending for Noah's treatment:

1)  We still are looking into homeopathy and are about to submit paperwork so we can have a consultation with the homeopath

2) We have an appointment with DAN! doctor Mary Megson at the end of February. Hopefully she will run tests to see how Noah is doing medically and we may begin doing biomed after this appointment.

3) Medicaid Waiver- this process is taking forever. I have applied and we are still waiting for the screener to come out to the home and complete the UAI on Noah. We may have another month of waiting before this happens.

4) Health Insurance coverage for ABA therapy???  We recently found out that Noah's insurance now has an autism benefit but we are not sure what that exactly covers. We have submitted paperwork for this and are waiting to see if they will cover any of his therapy expenses. Any help would be awesome. We are estimating that paying out of pocket for the minimum ABA therapy per week (6 hours) will cost us at least $1200-1400/month.

5) I am fighting for Early Intervention to provide us with speech in home. I have not heard yet if this is possible.

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.

Waiting Game and CEASE Therapy

So, I am feeling a little better today. These last few days have been hard. I have allowed myself to cry and talk about it and now I am back on the saddle.

Here are the treatments/interventions we are doing with Noah currently:

1) 1 hour of OT/week through Early Intervention- this will be increasing to 2 hours per week in the near future

2) GFCFSF diet

3) Cod Liver Oil

4) Probiotic

5) Constant interaction/redirection by my mother (she watches Noah while I work) and myself and my husband. Our OT has schooled us in doing "drills" with Noah on various toys/activities. We have been doing this for the last two months and we have seen a positive change in him. He has gone from fixating on balls, wheels and electronic buttons most of the day to playing with age appropriate toys with and without our involvement. We still monitor his play because he will quickly begin to fixate on parts of the toy and not use them as intended. We are also trying to implement some of the principles of ABA. Reinforcers and breaking down of tasks. Prompts. This seems to also be helping even though I know he needs intensive ABA for treatment.

We have found an online program for ABA therapy that is user friendly. It is called Rethink Autism. We will use this program until we receive ABA therapy in the home.

6) Epsom salt baths

7) Gymboree play groups 2-3xs per week for socialization.

Here are the treatments/interventions/resources we are waiting for:

1) The EDCD Medicaid waiver- I am praying that this will be our answer to cover some of the enormous costs of his treatment, which as of right now insurance is not covering.

2) Speech Therapy- we are on a waiting list for a spot to open up. I have no clue how long this will take.

3) ABA therapy in home- we are on 2 waiting lists and were told that there is a 4 to 6 month waiting list to begin these services as well.

4) We are waiting to see DAN! Doctor Mary Megson at the end of February. I am very excited to have this meeting and to gain an understanding of some of Noah's medical conditions.

5) I plan to add a multivitamin to Noah's regimen soon as well as enzymes. I am trying to implement everything in stages so it isn't too hard on him and so that I can see what is working and what is not.

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So as we wait we are trying to stay busy. Continue to learn and read about treatments. Try to implement  some of the techniques on our own. Budget our money and save as much as possible.

I have also started reading about CEASE therapy and I am excited about what this treatment may offer Noah in his recovery.

Noah's Pediatrician visit and an update

Today we took Noah to visit a new pediatrician. He was highly recommended by our OT and he specializes in autism. His son is also autistic.

The visit did not go as I had planned. While the doctor was very nice and willing to talk to us in length about Noah he dismissed some of the concerns I was having.  I have noticed a rash on and off since Noah went on probiotics. He chalked it up to a heat rash.... I don't agree. We talked about possible problems with yeast and the doctor said that a lot of information "out there" in books/internet isn't true.

He says that intensive ABA therapy for at least 20-25 hours a week is the only proven treatment for autism. He says vaccines do not cause autism. He told me that I didn't need to keep Noah on a probiotic long term and that other biomedical interventions are not shown to be effective ways of treating autism.
He checked Noah's ears and said they looked okay. That was basically it.... So, I am not sure we will see him going forward.

In other more exciting news, we have scheduled an appointment for Noah to see a well known DAN! doctor in Richmond. Dr. Mary Megson. I am very excited that she is willing to see him. He will see her on February 26th. I think she will do a more comprehensive exam and testing so we can rule out underlying medical conditions/concerns.

Noah has been doing fairly well. He is playing with age appropriate toys now. We still have to monitor him so that he won't fixate on certain parts of the toy (pressing one button). He is trying to use more words. Some of the words we are hearing often are: eat, dada, eieio, row row, close, cold, bye, baby (he is trying to say a lot of words but it is hard to understand what he is saying most of the time). He is signing "more", "milk" and "eat" and using the goodbye gesture. Eye contact is still sporadic. We are really working on this and providing reinforcements when he gives good eye contact. We are withholding items and stopping in the midst of his favorite songs/activities so he has to try to say the word or part of the word to get what he wants. This seems to be helping him. He is starting to understanding the importance of communicating in some way to get what he wants. He is doing well in Gymboree too. He is not crying any longer and will play in the gym. He is also sitting on the mat during the activities and observing the other children.

We are still on the waiting list for ABA therapy, speech therapy and the Medicaid waiver application is still processing. In the meantime, we are researching and reading and trying to conduct some of our own therapy with Noah.