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.

Taking a Break

Our homeopath decided that it is best that we give Noah a break this week and delay the next dosing of Hep B until next Wednesday. He is almost back to normal but he is still having a small bit of uncommon stimming behaviors and he is staying awake throughout the entire night, just like he did when he was a small baby. He wakes up every single hour crying and will not go back to sleep until he gets a bottle. He hasn't done this since he was 11-12 months old. I hope this passes quickly because it is wearing this mother down!

Our weekend is going to be busy. Gymboree class in the morning (the owner has decided to move Noah up to the next class!), a 2pm meeting with a service coordinator for the EDCD waiver (we will learn how many hours of help we qualify for) and I also plan to do a deep cleaning/organizing of the house in preparation for the newest member of the family- puppy Luna who arrives next weekend (so exciting!).

As always, I will continue to post updates on Noah as we continue CEASE therapy.

CEASE Clearing and Various Updates

Here are some updates on things I have posted about in previous blogs:

CEASE: We delayed Noah's new dosage of Hep B 30 c until Thursday due to his sickness earlier in the week. He continues to have a runny nose on/off, and I have noticed this week that he has been very emotional and cranky- more than usual. Yesterday,  I found that he kept bursting into tears for no apparent reason. Today, he kept screaming at everything. The only thing that calmed him down was going outside--- which we did ALL DAY LONG. He has also started to stim more--- shaking his head back and forth (which is not common), and I have noticed some facial tics that I haven't seen since he was 15 months old.  His face is constantly staying flushed and he has had a few green colored diapers. Are these side effects of the clearing?  I will need to ask the homeopath about these things and get her feedback.

EDCD Waiver: We received Noah's Medicaid card in the mail recently and we have started the process of hiring a respite provider. I am also looking into the EPSDT screening with a physician to see if Noah may qualify for ABA services through Medicaid. I am praying that he does. This would be a HUGE load off of our shoulders.

ABA/Speech/OT: Therapy continues to go well. He stays very busy through the week. We have recently seen a positive change in ABA. He is starting to catch on to things and he isn't resistant to his therapist Lily. I am not sure whether Noah is benefitting at all from speech. The speech therapist just sits there and plays with him and doesn't offer many suggestions on how we can work with him on speech (isn't that the point?!). She is very nice and Noah doesn't mind her but we need intensive speech therapy SO I am considering adding outpatient speech since his Medicaid went through. More than likely it will cover it now. Occupational Therapy has been more helpful to me than it is to Noah. His OT gives me ideas on eating, bathing, dressing, playing- a lot of problem solving and creative ideas. She helps keep me on track with developmental milestones that we need to work on.

Gluten free/Casein free diet: Noah has been adhering to these diet changes since December. Has it helped??? I don't really know. We have worked our butts off with Noah so I don't really know what exactly has caused the improvements we are seeing. I know the diet doesn't harm him but it is a pain in the butt to keep up. And.... what do you do when he goes to birthdays or out to dinner? I wish he could enjoy birthday cake, and easter candy and ice cream from time to time. But it isn't possible right now. I pray that homeopathy heals his body so that he will one day be able to enjoy various foods he cannot currently eat.

Things we are working on with Noah: 
-signing/using words or approximations for what he wants
-yes/no
-pointing to communicate
-taking turns with toys
-giving him choices to choose from- having him pick
-drawing/ arts and crafts (he hates this!)
-hygiene (brushing teeth, bathing, clipping nails, brushing hair--- This issue is exhausting. He has a very big issue with all of these things!)
-imitation (of body movements, noises, household tasks).
-imaginative play (still not comprehending this, but we have started to see some changes recently)

Puppy Therapy!: We have decided to get Noah a 7 month old puppy and hope he will benefit from the interaction. Little Luna (mini labradoodle) will be arriving the weekend of April 13th. Just two weeks before Noah's second birthday (BEST early birthday present ever!). I will post pics when she arrives. Hopefully he will like her!

Homeopathy for Me!: So, since I have seen such positive things with Noah in regards to homeopathy, I have decided to seek treatment as well. I will be having my first consultation with our homeopath April 10th. I have a lot of things I want to work on and I am looking forward to getting better.

That is all for now, I think!

As always, I am trusting that God will take care of Noah, me and my family and that He will give us His wisdom and guidance and we move forward and towards recovery. Happy Easter!!

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!

Week 1 CEASE Therapy

Noah has had the first rounds of hep B 30x clearing this week.  Our homeopath is going very slow to help him ease into the detox. She reported to me that she has never seen anyone respond to this dosage. On both Monday and Thursday Noah had detox reactions. The first day he was irritable, wanted to be held constantly, and his face was flushed... he was just very uncomfortable. His lips were also a tad irritated and swollen. On Thursday, he had diarrhea all day and the smell was horrible. He also had some more irritation on his lips. Today, the diarrhea continues.

Some things we have seen this week that are new:

-he is trying to make more noises/verbalize/try new signs more than usual

-he is more aware of people around him, more present

-he just seems to be understanding more of what we say to him

Is this because of CEASE therapy and homeopathy? I am not sure but we will take it!

His detox reactions this week confirmed to me that his vaccinations impacted him and his development. I will be interested to see how he does next week when we continue with the hep b clearing. I am also excited to see how he responds to his constitutional remedy Pulsatilla. We will be giving him a dose of this tomorrow.

In other news, I learned today from the DSS worker that Noah was approved for the EDCD waiver!!! This is a huge answer to prayer. The Medicaid application still has to process but it shouldn't be a problem. He doesn't have any money so he will qualify. By having this waiver, we will be able to receive respite services, and he will receive Medicaid which will cover copays and services that our private insurance is not covering. I also pray that it covers some ABA for Noah because we cannot afford much for him. Thank you Lord for Your provisions.

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.

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!

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"

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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!

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.

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.