Thursday, February 28, 2013

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. 

Saturday, February 23, 2013

The Homeopathic Remedies have Arrived!

We received a package in the mail today from the homeopath. Our first set of remedies for Noah has arrived. She sent us the Hep B vaccine in various doses, Pulsatilla and Calcium Carbonica (she thinks that these both may be his constitutional remedy) and Aconite (to help prepare the body for detox).

I am a big ball of excitement and nerves. I am excited to start and to see how he does... but I am also nervous because I don't want to cause him any harm or discomfort. I know that the detox isn't going to be symptom-free but I am praying for mild reactions. The homeopath says that she is going to take it slow and steady to help him with the detox.

She wants Noah to begin to take Vitamin C. She also would like for him to begin with the Aconite remedy. I should be able to start this tomorrow. I will dissolve the small pellet in water and syringe it in to Noah's mouth. Aconite is supposed to help the body prepare itself for the upcoming detox.

We plan to start tomorrow!!! I will continue to update the blog with our experience as we begin homeopathy and CEASE therapy to help our son recover from autism.

Thursday, February 21, 2013

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.

Friday, February 15, 2013

Therapy Schedule- Noah is a Busy Boy!

We just received word yesterday that more ABA slots have opened up. So we can now bump up Noah's ABA therapy to 3x/week for 2 hour sessions (6 hours/week). They also told me that they were going to give us a discounted rate since we live so close to the office. Instead of $50/hour for in home therapy, they will charge $35. So thankful for this. Every little bit helps.

We also were informed that Early Intervention will be adding Speech to his weekly therapy. On Tuesdays, we will have a speech therapist meet with Noah in the home for 1 hour. On Thursdays, we will continue with 1 hour of Occupational therapy. If you also add in all of the hours of work my mother and we put in (probably 15 more hours a week of one on one therapy) and his visits to Gymboree 3x/week, Noah is one busy little boy.

His schedule looks like this starting next week:

Monday: 2 hours of ABA with Lily, 2 hours of family directed therapy, 1 hour of Gymboree

Tuesday: 2 hours of family directed therapy, 1 hour of speech therapy

Wednesday: 2 hours of ABA with Lily, 2 hours of family directed therapy

Thursday: 2 hours of family directed therapy, 1 hour of occupational therapy, 1 hour of Gymboree

Friday: 2 hours of ABA with Lily, 2 hours of family directed therapy

Saturday: 1 hour of Gymboree, 2 hours of family directed therapy

Sunday: 2 hours of family directed therapy

Thursday, February 14, 2013

Hep. B vaccination and Signs of a Problem

In reviewing Noah's medical record, I have come to the realization that he struggled with vaccines from the very beginning. At 4 days old he was given the Hep B vaccination. Three days later his eye ducts became inflamed and infected. I didn't know this at the time, but I have learned that this is one of the many different symptoms that should alert a parent that their child is having difficulty with vaccinations. He was given another Hep B vaccination around 2 months old and the same exact reaction occurred.

The Homeopath we are currently working with also feels that this may be a key vaccine to detox for Noah as he always seemed to have some sort of reaction to this particular vaccination. She told me that this may be the first thing we detox. She also said that we will be working on a constitutional remedy to counteract the detox. Even though I am nervous about embarking on this path, I know I must for my precious boy. I want him to have the best life possible. I want him to thrive and grow. I will leave NO stone unturned to help him heal and recover and be everything God has intended for him to be. I pray that the Lord guides my steps and give me wisdom to make the right decisions for his care.

So, we will have our second meeting via Skype with the homeopath next Tuesday and then we will probably start the remedies. So exciting and so nerve racking at the same time!!!!

Monday, February 11, 2013

EDCD Waiver and Autism

Tomorrow we meet with an individual who will be conducting a UAI screening to see if Noah qualifies for the EDCD Medicaid waiver. I am nervous about this process and how it is going to go. This particular waiver was originally intended for the Elderly. It has since been made available to individuals that have disabilities, including autism. The person must meet certain criteria--- they must be dependent in ADLs and IADLs (activities of daily living such as bathing, dressing, feeding, toileting etc.) and have a serious medical need that could result in nursing home placement. If a person receives the EDCD waiver, they are allowed to receive respite services and they qualify for Medicaid. This is the key. If Noah received Medicaid, it would cover the ABA therapy he is in need of. It would pay all of our out of pocket expenses such as copays. It would pick up where insurance leaves off (or in our case, what it never covered originally).

Noah does nothing for himself without our help. He does not attempt to dress or undress himself. He does not feed himself yet. He isn't potty trained. He does not brush his own teeth or hair or groom himself in any way. He is completely dependent on us. So, I am pretty certain he qualifies in that department. I think his diagnosis of autism should qualify him for medical need as this disorder requires intensive weekly therapy (speech, occupational and ABA). So.... I am praying that this screening goes well and that Noah qualifies for help. If this were to go through, it would be such a huge weight off of our shoulders. He would get the therapy he needs and we wouldn't have to work 80 hours a week or sell all of our belongings to pay for therapy. If this doesn't go through, we will continue to trust that God will handle it.

UPDATE: The screening went okay. Not sure what to expect. They didn't ask that many questions about Noah but did state something to the effect of "it shouldn't be a problem" when I inquired about qualifying. We will receive a letter in two weeks to let us know their decision.

Sunday, February 10, 2013

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.

Saturday, February 9, 2013

Sickness, Regression and a few updates

Noah has been sick since Tuesday. When this happens, we have to stop all of our normal activities-- gymboree, therapy, and intensive one on one play with Noah and just take care of him... hold him... make him as comfortable as possible. Let him watch more tv than we usually would. I know once he starts feeling better we will be back to our normal, crazy schedule. I don't mind a little break.

We were told yesterday he has an ear infection. The doctor knows I am against giving antibiotic. He told me that I could continue to monitor Noah- see if his fever goes over 102 or if his symptoms progressively get worse. If any of these things occur, I am to start antibiotic. So far, we have been keeping the ear infection at bay with Garlic drops. They seem to really work so I am praying that they allow Noah to fight this infection naturally.

With sickness comes regression--- words and signs that he usually uses disappears. Activities that he was doing prior to the sickness have stopped and stimming behaviors have taken their place. Shaking his head and pacing mostly. This makes him feel better I guess. I know the regression is due to him not feeling well but I still hate to see it. I am praying that he will bounce back when he begins to feel better.

In other news, I had my first consult with a CEASE certified classical homeopath. She spent about an hour on the phone with me, asking a lot of detailed questions about Noah... his life so far, issues we are seeing, his personality. I am excited to see what she believes his constitutional remedy is.

I also have a screener coming out to the house on Tuesday to do the UAI screening for the EDCD Medicaid waiver. We are praying that this is approved so we can provide Noah all of the therapy he is in need of!

Monday, February 4, 2013

Hard Day

In the midst of much good news, much progress with Noah, I was told today that Noah's insurance does not have an autism benefit. The health insurance company misinformed me of this a few weeks ago.

This was pretty upsetting to find out. We just want to help Noah. We want him to have the very best chance at a normal, decent life. And his insurance does not cover autism?!!! It is a neurological disability and insurance won't help us????!!!! This makes me livid.

So, now this is where my faith gets tested again. I have to have faith that God is going to provide. I have to trust Him when I don't know how this is going to play out. I have to know that He is a good God and that He has good things in store for our little boy.  I am praying for a miracle. I am praying for financial help to handle this enormous cost of therapy---- I am praying that the EDCD Medicaid waiver gets approved for Noah.

Hebrews 11:1 "Now faith is the substance of things hoped for, the evidence of things not yet seen"


Noah has had a few breakthroughs lately:

He is starting to use his pointer finger almost independently- whoooohoo!

He is saying a few new words, trying to imitate things we are doing

He is a champ at doing puzzles now and stacking blocks

He is starting to do gestures to songs that we sing- like "head, shoulders, knees and toes"

I am truly thankful for this recent progress!

Friday, February 1, 2013

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.