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.
Showing posts with label autism services. Show all posts
Showing posts with label autism services. Show all posts
Tuesday, July 16, 2013
Wednesday, June 5, 2013
Interventions we have Tried with Noah and the Results Thus Far
Here are the list of interventions we have tried with Noah since last fall and the results we have seen from these interventions if any.
1) Occupational Therapy (1hour a week through Early Intervention Program): Our occupational therapist has been an invaluable part of the team. She has taught us so many things- about sensory processing disorder and how to treat Noah's SPD issues. She has given us creative strategies for eating, bathing and grooming issues and she helped Noah get on track with his play time skills and with other developmental milestones. I am positive we wouldn't be as far along without her help and guidance.
2) GFCFSF diet. We started the gluten, casein and soy free diet in December and have stuck faithfully to it since then. It has been difficult for various reasons--- limited food options for Noah (who didn't like much food to begin with) and the cost is much greater when you buy GFCFSF. I have heard that it can take up to 6 months for Gluten to leave a person's digestive track-- that being said, I do not know if we have seen the full benefit of this diet or not. I do know that when we removed dairy from his diet he had a detox reaction through his skin (a bad rash a week following the removal of dairy...) so that tells me it probably needed to go. We will probably continue with it until we can have some testing done to see what his allergies are and if he has gluten or casein sensitivities.
3) Cod Liver Oil, multivitamin, probiotics, vitamin C: so we introduced these at different points over the last 9 months. Since starting we have continued with them all except for the probiotic. I kept Noah on a probiotic (Culturelle) for about 3 months straight. I am sure it was good for his body to receive some active cultures since his body was depleted of good bacteria due to countless rounds of antibiotic. I do not know if we saw any significant changes from it though. I do think he may have been experiencing some yeast die off when we gave him the Culturelle but I am not 100% sure of that. He would have periods at night where he would scratch his stomach constantly... As far as the multivitamin and CLO- they are just a necessity due to his limited diet and the CLO is important for the brain and language, so we will keep them going. Vitamin C was added in when we began CEASE therapy. This helps support his body during detox.
4) Speech Therapy (1 hour a week): this was added at the beginning of the year when Noah was assessed at 12 months development for expressive language and 6 months receptive language. This is the therapy I have seen the least from (this isn't necessarily the fault of the therapist) I just don't know if 1 hour of ST in home is as beneficial as taking him to an outpatient ST.
5) ABA Therapy (6 hours a week): I think this has been one of the best interventions for Noah this far. Even though we can't afford the recommended 20 hours a week, we have seen positive results just from 6 hours a week. He is coming right along with this therapy and has mastered some of the programs and is moving on to new programs. My family (me, husband and my mother) all do extra therapy with Noah to help supplement the hours he needs.
6) Homeopathy and CEASE Therapy (started in February 2013): Okay, this is the number one intervention hands down. We have been doing this therapy with Noah for 3 months, detoxing the Hep B vaccination. The results has been nothing short of AMAZING. The first thing we noticed was that the "fog" he was in was lifting and he was alert and aware of his surroundings. Then, the language appeared. He went from saying 2-5 words a day to repeating almost any word he hears. It hasn't been a walk in the park, the detox reactions and return of old symptoms has been difficult to deal with.... but the positives have outweighed the struggles by far. If I could have only one intervention this would be it for Noah. Homeopathy in general has been awesome as well. To know that you can treat your child's ear infection, cold or other sickness with natural remedies at home and see better results than if given medication from the doctor, well.... it is just empowering and exciting.
7) Gymboree (2x a week for socialization): This started off bumpy but has been very good for Noah. He attends a music class that he loves and a regular play group each week. He used to cry and refuse to go in, he now can't get in there soon enough and throws a tantrum! Big change.
8) Puppy Luna (for socialization): our puppy arrived at the end of April and she is keeping Noah on his toes! Noah has to interact with her in some way each day- we have heard him say "No dog!" and recently "No Luna"... so that is a good start. They will be friends one day and Luna is fiercely protective of Noah which is awesome.
So, the top 3 interventions are definitely Homeopathy/CEASE therapy, ABA therapy and Occupational therapy for Noah! This may change as we go along.
1) Occupational Therapy (1hour a week through Early Intervention Program): Our occupational therapist has been an invaluable part of the team. She has taught us so many things- about sensory processing disorder and how to treat Noah's SPD issues. She has given us creative strategies for eating, bathing and grooming issues and she helped Noah get on track with his play time skills and with other developmental milestones. I am positive we wouldn't be as far along without her help and guidance.
2) GFCFSF diet. We started the gluten, casein and soy free diet in December and have stuck faithfully to it since then. It has been difficult for various reasons--- limited food options for Noah (who didn't like much food to begin with) and the cost is much greater when you buy GFCFSF. I have heard that it can take up to 6 months for Gluten to leave a person's digestive track-- that being said, I do not know if we have seen the full benefit of this diet or not. I do know that when we removed dairy from his diet he had a detox reaction through his skin (a bad rash a week following the removal of dairy...) so that tells me it probably needed to go. We will probably continue with it until we can have some testing done to see what his allergies are and if he has gluten or casein sensitivities.
3) Cod Liver Oil, multivitamin, probiotics, vitamin C: so we introduced these at different points over the last 9 months. Since starting we have continued with them all except for the probiotic. I kept Noah on a probiotic (Culturelle) for about 3 months straight. I am sure it was good for his body to receive some active cultures since his body was depleted of good bacteria due to countless rounds of antibiotic. I do not know if we saw any significant changes from it though. I do think he may have been experiencing some yeast die off when we gave him the Culturelle but I am not 100% sure of that. He would have periods at night where he would scratch his stomach constantly... As far as the multivitamin and CLO- they are just a necessity due to his limited diet and the CLO is important for the brain and language, so we will keep them going. Vitamin C was added in when we began CEASE therapy. This helps support his body during detox.
4) Speech Therapy (1 hour a week): this was added at the beginning of the year when Noah was assessed at 12 months development for expressive language and 6 months receptive language. This is the therapy I have seen the least from (this isn't necessarily the fault of the therapist) I just don't know if 1 hour of ST in home is as beneficial as taking him to an outpatient ST.
5) ABA Therapy (6 hours a week): I think this has been one of the best interventions for Noah this far. Even though we can't afford the recommended 20 hours a week, we have seen positive results just from 6 hours a week. He is coming right along with this therapy and has mastered some of the programs and is moving on to new programs. My family (me, husband and my mother) all do extra therapy with Noah to help supplement the hours he needs.
6) Homeopathy and CEASE Therapy (started in February 2013): Okay, this is the number one intervention hands down. We have been doing this therapy with Noah for 3 months, detoxing the Hep B vaccination. The results has been nothing short of AMAZING. The first thing we noticed was that the "fog" he was in was lifting and he was alert and aware of his surroundings. Then, the language appeared. He went from saying 2-5 words a day to repeating almost any word he hears. It hasn't been a walk in the park, the detox reactions and return of old symptoms has been difficult to deal with.... but the positives have outweighed the struggles by far. If I could have only one intervention this would be it for Noah. Homeopathy in general has been awesome as well. To know that you can treat your child's ear infection, cold or other sickness with natural remedies at home and see better results than if given medication from the doctor, well.... it is just empowering and exciting.
7) Gymboree (2x a week for socialization): This started off bumpy but has been very good for Noah. He attends a music class that he loves and a regular play group each week. He used to cry and refuse to go in, he now can't get in there soon enough and throws a tantrum! Big change.
8) Puppy Luna (for socialization): our puppy arrived at the end of April and she is keeping Noah on his toes! Noah has to interact with her in some way each day- we have heard him say "No dog!" and recently "No Luna"... so that is a good start. They will be friends one day and Luna is fiercely protective of Noah which is awesome.
So, the top 3 interventions are definitely Homeopathy/CEASE therapy, ABA therapy and Occupational therapy for Noah! This may change as we go along.
Friday, March 22, 2013
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!
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!
Tuesday, December 18, 2012
We just received a diagnosis for our son Noah
This is my first entry. I am starting this blog for a few reasons.... to help me process my feelings related to this journey. To document my son's progress and recovery. To meet others that are going through this situation as well.
My 19 month old son Noah was diagnosed with autism spectrum disorder on December 11th, 2012. We have been concerned for quite some time. Last week the doctor confirmed our worst fear. Looking back, I had a gut feeling something wasn't quite right. As time went on I could see the differences between him and other children his age. His cousin, who is two months older, was always very interactive/social. When they spent time together I could see a huge difference in their behaviors. I tried to dismiss my feelings- telling myself that Noah had his own personality and quirks.
Here are some of the behaviors we noticed early on:
9-12 months- lack of eye contact. more interest in objects than people. loved spinning items. closing/opening doors. started daydreaming a lot/"zoning out". paid a lot of attention to details on toys (textures, specific parts). would often stare at lights, fans. shaking his head left to right (like he was saying no)-he would do this at bedtime but we were assured that this was normal.
When Noah was 15 months old, my mother happened to mention that she was concerned that he wasn't making eye contact with her and that this wasn't normal for a child this age. I immediately went online to do a search on google- up popped all of this information on autism. He had many of the red flag symptoms...
We immediately went to the pediatrician who made a referral to a developmental pediatrician. We were put on a 4 month waiting list and then referred to the early intervention program. He has been receiving one hour of occupational therapy since that time.
Some of the behaviors we see now at 19 months:
eye contact is sporadic
doesn't respond to his name often
stimming behaviors: shaking his head left to right, pacing, hand flapping when excited, spinning wheels, walking on toes from time to time
high anxiety around other children/social groups
does not point or wave
food aversions
delayed speech- says a few words but not purposeful words (doesn't say mama or dada or baba)
zones out
So what is next??? I am trying desperately to get him additional therapy and services. I thought it would be easier now with a diagnosis but I was dead wrong. I am running into brick walls. Waiting lists for 4 to 6 months. Financial limits, no insurance coverage for ABA. No parental training while we wait.
It is just so frustrating---- It is hard enough to receive this diagnosis, and it is made even worse when you can't get him the help he needs. I have purchased books, videos and will educate myself and family until I find training and help. I will keep calling and seeking help. I will keep trying for him. I don't have another choice.
My 19 month old son Noah was diagnosed with autism spectrum disorder on December 11th, 2012. We have been concerned for quite some time. Last week the doctor confirmed our worst fear. Looking back, I had a gut feeling something wasn't quite right. As time went on I could see the differences between him and other children his age. His cousin, who is two months older, was always very interactive/social. When they spent time together I could see a huge difference in their behaviors. I tried to dismiss my feelings- telling myself that Noah had his own personality and quirks.
Here are some of the behaviors we noticed early on:
9-12 months- lack of eye contact. more interest in objects than people. loved spinning items. closing/opening doors. started daydreaming a lot/"zoning out". paid a lot of attention to details on toys (textures, specific parts). would often stare at lights, fans. shaking his head left to right (like he was saying no)-he would do this at bedtime but we were assured that this was normal.
When Noah was 15 months old, my mother happened to mention that she was concerned that he wasn't making eye contact with her and that this wasn't normal for a child this age. I immediately went online to do a search on google- up popped all of this information on autism. He had many of the red flag symptoms...
We immediately went to the pediatrician who made a referral to a developmental pediatrician. We were put on a 4 month waiting list and then referred to the early intervention program. He has been receiving one hour of occupational therapy since that time.
Some of the behaviors we see now at 19 months:
eye contact is sporadic
doesn't respond to his name often
stimming behaviors: shaking his head left to right, pacing, hand flapping when excited, spinning wheels, walking on toes from time to time
high anxiety around other children/social groups
does not point or wave
food aversions
delayed speech- says a few words but not purposeful words (doesn't say mama or dada or baba)
zones out
So what is next??? I am trying desperately to get him additional therapy and services. I thought it would be easier now with a diagnosis but I was dead wrong. I am running into brick walls. Waiting lists for 4 to 6 months. Financial limits, no insurance coverage for ABA. No parental training while we wait.
It is just so frustrating---- It is hard enough to receive this diagnosis, and it is made even worse when you can't get him the help he needs. I have purchased books, videos and will educate myself and family until I find training and help. I will keep calling and seeking help. I will keep trying for him. I don't have another choice.
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