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.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, June 11, 2013
Thursday, January 17, 2013
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.
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.
Monday, January 7, 2013
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.
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.
Monday, December 31, 2012
Goodbye 2012! Welcome 2013
This has been THE absolute hardest year of my life. Without a doubt. In addition to selling a house and moving, we watched our only son go inward and eventually get diagnosed with autism. The last 5 months are a blur to me--- fear, anxiety, depression, grief, anger, panic..... questioning God, losing faith, feeling completely alone.... I constantly got in arguments with those people closest to me- I was taking my feelings out on them.
Don't get me wrong, I am still struggling with this new reality we are faced with. But something inside of me has changed. I don't quite know what it is. I just have felt different these last few days. I feel like I am preparing for the fight of my life....for a great battle. But I have a sense of calm and peace in this storm. I have a game plan. I have read and researched til I am blue in the face. I am on multiple waiting lists for ABA therapy. I have an EEG scheduled and a doctor's appointment lined up. I have a Medicaid Waiver application processing. I have an online ABA training program selected while we wait for ABA to start. I have planned a budget just in case we get no financial help. I have started Noah on GFCF diet and have started to add supplements as well. I am choosing to trust God.
I don't know why God has decided to allow this. I just know that He has. I will do everything I can in my power to help Noah and when I have done everything---I have to trust that God will take care of the rest. I am choosing to TRUST. I am choosing to have PEACE. I am choosing to have FAITH in the unseen. I am making the choice every minute. Fear continually creeps up inside of my heart and I have to battle it... I have to constantly choose to TRUST God. He loves Noah much more than I do and He has good things in store for him... and for us.
So I am saying goodbye, farewell to 2012. I am welcoming this coming year of 2013. I am praying for a good year. Full of progress... resources.... help.... support from friends and family.... time with family.... enjoying our little boy..... a year full of learning and growing... a year of TRUSTING God with Noah and with our lives.
Sunday, December 30, 2012
Update- Trying to focus on the positives!
There have been a few new things to happen this week with Noah.
We have been giving him Culturelle probiotic over the last two weeks. Then, out of the blue, he began to break out in a stomach rash and had difficulty at night sleeping, and I found him scratching at his stomach (and waking every 2 hours). There have been no other changes to his diet so I am thinking that this is a yeast die off. I have read that you can have rashes/itching when there is a die off. I immediately cut the dose in half and it has started to heal which is good.
I also added Cod Liver Oil to his routine. I mixed it in with his Gluten Free oatmeal and he didn't seem to notice (so relieved!). I have heard great things about this oil- doctors have found that it improves eye contact, and lessens visual stimming. I can't say I have seen anything yet but I just started this yesterday.
Some of his stimming behaviors have disappeared recently (pacing/side eye glancing) and others have re-emerged (hand flapping, head shaking).... He has started to fixate on electronic buttons (pushing them over and over and over). He has been less verbal this weekend too (not using his normal 8-10 words) It is just so hard to tell what is going on with him half of the time and what is causing what. I feel like a detective! A really bad detective! It is just a guessing game.
I started getting discouraged seeing these new behaviors pop up.... I have to remind myself that he is going to have regression from time to time. That he will take steps backwards and then steps forward... as long as the trajectory is positive that is what I must focus on.
I looked through his daily journal over the last 3 and half months and I could immediately see how far he/we have come. His words have increased. He enjoys playing with typical toys now. He is warm and engaging more than he is not. He doesn't zone out the majority of the day anymore. He isn't fixating on one thing all day like he used to (balls, spinning wheels/bowls). He is tolerating social settings with other children (Gymboree). I have to make a choice to focus on the positive----there are many things/improvements to be grateful for.
We have been giving him Culturelle probiotic over the last two weeks. Then, out of the blue, he began to break out in a stomach rash and had difficulty at night sleeping, and I found him scratching at his stomach (and waking every 2 hours). There have been no other changes to his diet so I am thinking that this is a yeast die off. I have read that you can have rashes/itching when there is a die off. I immediately cut the dose in half and it has started to heal which is good.
I also added Cod Liver Oil to his routine. I mixed it in with his Gluten Free oatmeal and he didn't seem to notice (so relieved!). I have heard great things about this oil- doctors have found that it improves eye contact, and lessens visual stimming. I can't say I have seen anything yet but I just started this yesterday.
Some of his stimming behaviors have disappeared recently (pacing/side eye glancing) and others have re-emerged (hand flapping, head shaking).... He has started to fixate on electronic buttons (pushing them over and over and over). He has been less verbal this weekend too (not using his normal 8-10 words) It is just so hard to tell what is going on with him half of the time and what is causing what. I feel like a detective! A really bad detective! It is just a guessing game.
I started getting discouraged seeing these new behaviors pop up.... I have to remind myself that he is going to have regression from time to time. That he will take steps backwards and then steps forward... as long as the trajectory is positive that is what I must focus on.
I looked through his daily journal over the last 3 and half months and I could immediately see how far he/we have come. His words have increased. He enjoys playing with typical toys now. He is warm and engaging more than he is not. He doesn't zone out the majority of the day anymore. He isn't fixating on one thing all day like he used to (balls, spinning wheels/bowls). He is tolerating social settings with other children (Gymboree). I have to make a choice to focus on the positive----there are many things/improvements to be grateful for.
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