Thursday, March 31, 2011
April is Autism Awareness Month!
I decided to kick off the beginning of Autism Awareness Month with my most FAVORITE PSA's off all time. It sends such a powerful message and always puts tears in my eyes. Join us as we, along with many other families fight not only for awareness and acceptance, but also as we try with every fiber of our being to give our children a fighting chance in the world.
If you don’t have a child with Autism, take the first step and let go of what you think Autism is. Go online and find out the truth. Autism is frustrating, it’s unfair, it’s painful, it’s draining…but it’s also beautiful, amazing, and breathtaking.
For more information about Autism please visit, http://www.nationalautismassociation.org or www.autism.com
(I usually end my posts with a Bible verse, but tonight I’m going to end with a quote from a famous Autism advocate and educator, Temple Grandin. )
“I am different, not less.”
Temple Grandin
Tuesday, March 29, 2011
Potato Leek Soup
I just made this (maybe 10 minutes ago) and my kids bowls (and mine) are already empty! This was really good! I got the idea from The Kid-Friendly ADHD &Autism Cookbook. On page 279 they have "Dougs Potato Leek Soup." I decided to take the idea and put a little spin on it. This soup was yummy and very nutritious at the same time. It'll be a nice soup to have on a cold winter day. (Hopefully that winter day is a long while away!)
Ingredients:
2 medium sized organic leeks (make sure you cut off the ends, cut it into 4 sections the long way, and clean thoroughly)
5 small/medium organic potato's
1 medium organic onion
3 medium organic carrots
2 cloves of organic garlic
3 stalks of organic celery
1/2 package of organic GFCFSF bacon (We use Applegate)
Organic chicken stock (I used Imagine, low sodium)
GFCFSF Butter (We use Earths Balance)
Chop all the veggies and bacon into small chunk. Take a large stainless steel sauce pan and saute the bacon until cooked. Place on paper towel to drain the excess grease. Keep the remaining grease from the bacon in the pan and saute the leeks, onion, carrots, celery and garlic. Once cooked put aside to cool and put the chopped potato's (with the skin on) in the pot with 1 cup of chicken stock. Cook until soft (add more chicken stock as needed). While the potato's are cooking, put the cooked veggies in a food processor and pulse (you still want it chunky, not pureed) and place aside. When the potato's are soft add 1-2 tbsp of butter (your preference as to how much). Next, put the potato's in the food processor and pureed them. I then added them back in the pot along with the veggies and bacon and mixed them well. I then added 2 tbsp of organic unflavored rice protein (just to add more protein), more chicken stock (to reach your desired consistency), fresh ground sea salt and fresh ground pepper. Finally stir it all together until it's well combined. Once warm it is ready to enjoy!
Ingredients:
2 medium sized organic leeks (make sure you cut off the ends, cut it into 4 sections the long way, and clean thoroughly)
5 small/medium organic potato's
1 medium organic onion
3 medium organic carrots
2 cloves of organic garlic
3 stalks of organic celery
1/2 package of organic GFCFSF bacon (We use Applegate)
Organic chicken stock (I used Imagine, low sodium)
GFCFSF Butter (We use Earths Balance)
Chop all the veggies and bacon into small chunk. Take a large stainless steel sauce pan and saute the bacon until cooked. Place on paper towel to drain the excess grease. Keep the remaining grease from the bacon in the pan and saute the leeks, onion, carrots, celery and garlic. Once cooked put aside to cool and put the chopped potato's (with the skin on) in the pot with 1 cup of chicken stock. Cook until soft (add more chicken stock as needed). While the potato's are cooking, put the cooked veggies in a food processor and pulse (you still want it chunky, not pureed) and place aside. When the potato's are soft add 1-2 tbsp of butter (your preference as to how much). Next, put the potato's in the food processor and pureed them. I then added them back in the pot along with the veggies and bacon and mixed them well. I then added 2 tbsp of organic unflavored rice protein (just to add more protein), more chicken stock (to reach your desired consistency), fresh ground sea salt and fresh ground pepper. Finally stir it all together until it's well combined. Once warm it is ready to enjoy!
Thursday, March 24, 2011
Deep Breath.....
So you may have noticed that I've been MIA allot lately on my blog. All I can say is it's all due to the hectic life of an ASD mommy. We found out our insurance won't cover ABA Therapy (it's private pay) so I am now going to become Peanuts ABA Therapist. I joined a research study through the Center for Autism and Related Disorders (aka CARD) to get some free ABA training. The training is great but I procrastinated and have 40 hours of ABA training to complete by March 31st (agh!). I will say I'm very impressed with their program and plan to use it with my angel this summer. Sassy saw the Pediatric GI doc and we left with little answers. Yes, she suffers from constipation (no kidding, I didn't need a specialist for that!) and we can give her Miralax. No, they don't know what causing the vomiting and abdominal distention she gets on occasion, but maybe she's an air swallower. Her blood test for Celiac came back negative, her stool culture was negative. She's doing ok right now so I'm just keeping my fingers crossed. We recently had many issues with our Naturopath and left her practice. I then found a new Naturopath who is also a DAN! doctor and (by miracle of God) got Peanut in to see him last Friday. I LOVE him and I'm confident he know what he's doing. We now have an awesome long term plan in place and we couldn't be happier with it.
Finally, Sassy had her Sensory Integration Evaluation today. I was looking forward to it because her behavior and sensory problems are getting worse. I'm noticing more stims and it's making me nervous. Well the evaluation went well. The therapist confirmed my suspicions and agreed that she needs SI therapy. They now have her on their wait list for appointments to start treatment. They are nicely going to try to schedule it for the same day and time as Peanuts SI Therapy. She then told me that she had some other concerns and would like Sassy to have a developmental eval. She told me she suspected that Sassy had PDD . Okay.....deep breath.....what?
The more I watched her with Sassy I realized the eye contact just was not there, she was not flexible with her activities, her obsessions with certian toys and then we ended the session with a tantrum. What I had been trying hard not to see was now put in front of my face, so now what? I sat in silence on the way home. I called my husband and was met with a lack of surprise from his end of the conversation. At first my mind was a whirlwind of questions. (What are we going to do?, Where should we go for diagnosis? Will we bring her to the DAN! doctor too? Can I do ABA by myself with both kids? What other services might she need? How are we going to pay for this? )
After I was done letting my brain go nuts with "what if's" I came back down to planet Earth. Why worry about it? For a second I forgot everything I already knew. Yeah, it will stink if she is identified with Autsim, but so what! She's already GFCFSF. We already have a DAN! doctor we trust. We already have a neurologist. We already have her in SI therapy. We've already done transition with the school and they know our family already. We caught it early, which is paramount! What was I worrying about? I have given countless families with a new ASD diagnosis advice as to where to go first, what to look in to etc. How about I take my own advice? I got home and made my first of many phone calls. No big deal. She's still the same Sassy. It would be nice to know that her tantrums aren't because she's a diva, but is because of Autism, and with a little ABA and SI Therapy we can work with it. All I can do is take a deep breath, and just keep going. I'm reminded of one of my kids recent memory verses that keeps running through my mind today...
"I can do all things through Christ who strengthens me." Philippians 4:13
God Bless!
 |
| My Sassy |
The more I watched her with Sassy I realized the eye contact just was not there, she was not flexible with her activities, her obsessions with certian toys and then we ended the session with a tantrum. What I had been trying hard not to see was now put in front of my face, so now what? I sat in silence on the way home. I called my husband and was met with a lack of surprise from his end of the conversation. At first my mind was a whirlwind of questions. (What are we going to do?, Where should we go for diagnosis? Will we bring her to the DAN! doctor too? Can I do ABA by myself with both kids? What other services might she need? How are we going to pay for this? )
After I was done letting my brain go nuts with "what if's" I came back down to planet Earth. Why worry about it? For a second I forgot everything I already knew. Yeah, it will stink if she is identified with Autsim, but so what! She's already GFCFSF. We already have a DAN! doctor we trust. We already have a neurologist. We already have her in SI therapy. We've already done transition with the school and they know our family already. We caught it early, which is paramount! What was I worrying about? I have given countless families with a new ASD diagnosis advice as to where to go first, what to look in to etc. How about I take my own advice? I got home and made my first of many phone calls. No big deal. She's still the same Sassy. It would be nice to know that her tantrums aren't because she's a diva, but is because of Autism, and with a little ABA and SI Therapy we can work with it. All I can do is take a deep breath, and just keep going. I'm reminded of one of my kids recent memory verses that keeps running through my mind today...
"I can do all things through Christ who strengthens me." Philippians 4:13
God Bless!
Mommy Provost
Sunday, March 20, 2011
SPD and Autism: Part 2
Peanut has various sensory issues, mostly sensory seeking. Currently Peanut goes to Sensory Integration Therapy an hour a week. Sassy is about to begin SI therapy as well this week. It's wonderful that we are able to get insurance coverage for this service, but an hour a week isn't enough. In order for a SI program to be successful, it must also be used at home. This sounds like a daunting task, but we have learned many ways that we can bring SI into our home.
When we began SI Therapy, Peanuts number one need was an oral motor need. He was constantly chewing on everything. So the first thing we did was create a "chewy basket". We took a basket and kept it in a particular area of our house that was accessible to Peanut. We then filled the basket with things that were safe for him to chew on. Be sure to chose items that are specifically made to be in children’s mouths and that don't have small parts that could be chewed off and choked on. An OT had suggested to us to buy dog chew toys. It sounded like a good idea at first, but with some research it quickly was a bad idea. What was the lead content in dog chew toys? Do they contain BPA or other chemicals? There are some really good OT websites out there that have items specifically for chewing. We use Chewy Tubes. Peanut likes them, they are not too expensive, they are safe, and they come in different shapes, thicknesses and textures. We are able to buy them through the facility that our children go for their SI therapy (saves us on shipping).
Our next struggle was head banging. Peanut would hit his head on anything (people, couches, walls, file cabinets). We found (and this may not help everyone with this problem), was that if we put a hat on his head he would stop banging his head. The feeling of the hat on his head gave him enough sensory input to fulfill his need. So we created a second basket with hats. When Peanut began to bang his head we would prompt him to go pick out a hat.
This bin can be filled with anything your child loves that can stimulate the sensory systems. This Playskool gears toy was one of the first toys that Peanut played with as it was intended (instead of holding it and running in circles with it all day). This toys lights up, the gears spin, and it plays music (perfect sensory toy). We also have some textured sensory balls (an awesome find at Costco), pull toobs, tops, a windmill (a great oral motor sensory activity), rubber balls, chew tubes, brushes, a soft fabric flower that sings when you push it etc, etc...
We then created a second bin that was out of reach (some of the pieces posed a choking hazard) and included more sensory items for Peanuts oral motor needs. We included things like whistles and bubbles.
Last summer we decided to create our own sensory room. At first the task seemed impossibly expensive but I soon realized it didn't really have to be! First, we had to figure out where we were going to create this sensory area. We had a space in our basement that was ideal (and the only place we had space for it). If you don't have a room that you can spare, then an area of the house, or a secluded corner in a room could also be utilized as a sensory area. When choosing a location, keep in mind what may be distracting for your child. Is it bright? Noisy? Are there strong smells? (We had our cat box near by when we first created the sensory room, and so we relocated it so any smell it could create didn't bother Peanut while he was down there.)
Next we looked at examples of other sensory rooms online and in different therapeutic locations. A ball pit is definitely an activity that Peanut is drawn to, but we couldn't afford to pay for a ball pit to be constructed in our home. I looked online for ball pits but they were anywhere from $50.00 to $200.00. I went to Walmart and bought a blow up kiddie pool. (I think we paid $6.00). Next, we needed balls for our ball pit. I was able to find bags on clearance (at Targets annual toy clearance) for $5.00 a piece. Peanut has issue with low tone and trunk stability so sliding can be an issue (he falls backwards when he slides down) so we wanted to include a slide to help with his trunk stability and motor planning. We splurged and we bought a slide from Toys r Us for $50.00. We took this slide and put it in the ball pit so Peanut could slide down it and land in the balls. He loves to do this and then roll his face and body around in the balls. I would love to get a second deeper pool to fill with balls so he can bury himself in it.
I have to say, adding strategies for sensory regualtion into our lives has changed our lives for the better. Peanut has less sensory issues because of it and it really helps to regualte him. We recently stopped using the room for a while (it became a storage area over Christmas time) and his sensory problems have begun to reemerge again. Now that the room is clean again, we WILL be down there.
If you are not familiar with Sensory Processing Disorder and Sensory Integration, you can find out more information at: http://www.sensory-processing-disorder.com/
Information on Sensory Diets (no...not diet as in food) http://www.associatedcontent.com/article/7758796/sensory_diet_for_the_tactile_system.html
I highly recommend 2 books as well. The first one is, "The Out of Synch Child." by Carol Stock Kranowitz. If you have a child with Autism with Sensory Issues I would also highly recommend, "1001 Great Ideas for Teaching and Raising a Child with Autism or Asperger's." by Ellen Notbohm and Veronica Zysk.
When we began SI Therapy, Peanuts number one need was an oral motor need. He was constantly chewing on everything. So the first thing we did was create a "chewy basket". We took a basket and kept it in a particular area of our house that was accessible to Peanut. We then filled the basket with things that were safe for him to chew on. Be sure to chose items that are specifically made to be in children’s mouths and that don't have small parts that could be chewed off and choked on. An OT had suggested to us to buy dog chew toys. It sounded like a good idea at first, but with some research it quickly was a bad idea. What was the lead content in dog chew toys? Do they contain BPA or other chemicals? There are some really good OT websites out there that have items specifically for chewing. We use Chewy Tubes. Peanut likes them, they are not too expensive, they are safe, and they come in different shapes, thicknesses and textures. We are able to buy them through the facility that our children go for their SI therapy (saves us on shipping).
Our next struggle was head banging. Peanut would hit his head on anything (people, couches, walls, file cabinets). We found (and this may not help everyone with this problem), was that if we put a hat on his head he would stop banging his head. The feeling of the hat on his head gave him enough sensory input to fulfill his need. So we created a second basket with hats. When Peanut began to bang his head we would prompt him to go pick out a hat.
 |
| Peanut in one of his favorite hats. |
Next we decided to start small with sensory toys, and we created a sensory bin. (Our toys are spearated into bins to encourage spontaneous speech.) This is also a good alternative for those who have limited space in their homes.
 |
| Our Sensory Bin |
We then created a second bin that was out of reach (some of the pieces posed a choking hazard) and included more sensory items for Peanuts oral motor needs. We included things like whistles and bubbles.
Last summer we decided to create our own sensory room. At first the task seemed impossibly expensive but I soon realized it didn't really have to be! First, we had to figure out where we were going to create this sensory area. We had a space in our basement that was ideal (and the only place we had space for it). If you don't have a room that you can spare, then an area of the house, or a secluded corner in a room could also be utilized as a sensory area. When choosing a location, keep in mind what may be distracting for your child. Is it bright? Noisy? Are there strong smells? (We had our cat box near by when we first created the sensory room, and so we relocated it so any smell it could create didn't bother Peanut while he was down there.)
Next we looked at examples of other sensory rooms online and in different therapeutic locations. A ball pit is definitely an activity that Peanut is drawn to, but we couldn't afford to pay for a ball pit to be constructed in our home. I looked online for ball pits but they were anywhere from $50.00 to $200.00. I went to Walmart and bought a blow up kiddie pool. (I think we paid $6.00). Next, we needed balls for our ball pit. I was able to find bags on clearance (at Targets annual toy clearance) for $5.00 a piece. Peanut has issue with low tone and trunk stability so sliding can be an issue (he falls backwards when he slides down) so we wanted to include a slide to help with his trunk stability and motor planning. We splurged and we bought a slide from Toys r Us for $50.00. We took this slide and put it in the ball pit so Peanut could slide down it and land in the balls. He loves to do this and then roll his face and body around in the balls. I would love to get a second deeper pool to fill with balls so he can bury himself in it.
 |
| Our ball pit and slide. |
Peanut is more of a sensory seeker, so he needs alot of deep joint pressure. Knowing this we knew we needed a trampoline. For his birthday the previous year, Nana had bought him one and so this made it's way down to the new sensory room. A trampoline can be purchased from numerous online sites as well as in most toy stores. Their cost can range from $30 and on up.
We wanted to also work on Peanuts vestibular system so we had to find a way to help him spin safely in the space we had available. The perfect way we have found to spin, is using a "Sit n Spin". It retails for $20.00. I had found it on sale for $15.99 and then had a $10.00 gift card so it cost us $5.99!
 |
| "Super Peanut" on his trampoline |
We also wanted to include somthing to crawl in but due to space issues it had to be able to be stored away. A collapsible house or tube is perfect for this. We had a play hut set that has tubes to crawl through as well as houses to sit in. The whole thing doesn't fit in our sensory room, but we can manage having one hut open and still have room for Sassy to run around and play as well.
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| Peanut in the hut. |
Finally we added toys in the room that we thought would be stimulating for Peanut that he enjoyed using. We made sure to also keep in mind his fine and gross motor skills that he needed to work on as well.
 |
| Some of our "sensory" toys. |
My husband would love to hang a swing or a hammock swing from the ceiling but we havn't done that as of yet because of a space issue. We do have a swing set outside and use it often for Peanut to swing and spin. That definitely could be an option for other homes. When all was said and done I think we spent about $100.00 on our sensory room! (with time, patience and planning) If we had to buy everything down there I think it may have cost less than $500.00 which is really a good price for a room like that!
I have to say, adding strategies for sensory regualtion into our lives has changed our lives for the better. Peanut has less sensory issues because of it and it really helps to regualte him. We recently stopped using the room for a while (it became a storage area over Christmas time) and his sensory problems have begun to reemerge again. Now that the room is clean again, we WILL be down there.
If you are not familiar with Sensory Processing Disorder and Sensory Integration, you can find out more information at: http://www.sensory-processing-disorder.com/
Information on Sensory Diets (no...not diet as in food) http://www.associatedcontent.com/article/7758796/sensory_diet_for_the_tactile_system.html
I highly recommend 2 books as well. The first one is, "The Out of Synch Child." by Carol Stock Kranowitz. If you have a child with Autism with Sensory Issues I would also highly recommend, "1001 Great Ideas for Teaching and Raising a Child with Autism or Asperger's." by Ellen Notbohm and Veronica Zysk.
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” – Phil 4:19
Mommy Provost
Sunday, March 13, 2011
The worry that is Autism...
In the past few weeks my anxiety, stress and worry over what to do with Peanut and his treatment has slowly begun to build upon me. In the past few weeks not a day has gone by that I haven't cried. I'd been doing an okay job holding it all together and then it all came crashing in on me this past week. We had Sassy's GI appointment and we received Peanuts test results from his recent testing. I was so stressed about it all I started to neglect doing things I needed to do and liked to do. Among those things was posting in my blog (which is why I haven't posted anything all week). Another thing that I began to neglect was prayer.
On Friday I was at my worst. Peanut had been up all the night before so I was tired (more than usual) and extremely stressed to say the least. We went to music therapy and once we were home mommy "checked out" for the day. Of course my kids were fed and taken care of but I was so riddled with stress I couldn't do much else and so for the entire day (not typical for me) the TV was on and we did virtually nothing else.
Saturday night my husband and I sat and talked and I was able to vent all my worries and frustrations to him. We came up with a short term game plan to last us until Tuesday. I felt better, and then we went to bed. All night my sleep was restless and the worry had a hold on me again. This morning I awoke earlier than the rest of the house and paced. "What were we going to do?" "How were we going to make sure we made the right decisions." "We need to act quick or we will miss our opportunity and it will be lost to us forever!" As a mother it's such a helpless feeling to not have the answers you need to care for your child's health and future. Unfortunately with Autism there will always be unanswered questions.
Once everyone was up it was time to go to church. It's rare I'm able to actually sit in a service but thankfully today I was able to sit and hear the entire message! The message today was about prayer. It was such a great message I wish I could post it! I don't even feel I could summarize it well enough but I'll try. Our worries and fears stand between us and God. The more we worry, the bigger it gets until someday you can't see God as well and your relationship with him begins to diminish. This was my problem. Instead of focusing on God, I was focusing on Autism. What I really need to do is focus on God and trust in him to guide us through this journey with Autism. Basically we have a choice to make. We can let our worries eat us up and defeat us, blocking our path to God, or we can essentially give our worries and fears to God and live in his Peace and Love. According to the Bible doing this is a 2 step process. First you need to stop worrying and second we need to pray. This was THE message I needed to hear. The Pastor told us that today was going to be the day we made our decision. A large cross was brought to the front of the sanctuary and screwed onto the platform. He had post-it notes in every pew for all of us. He told us that if you chose to give up your worries to God then write that worry down on the post it note, bring it up to the cross and "stick it to the cross".
I made my decision. I was at the end of my rope and I knew I couldn't do this on my own anymore. It was time to let the one who DID have all the answers take over. So I took my post-it note and I wrote in big letters, "AUTISM". I walked right up to the cross and stuck it on. We all prayed and I left feeling better. We made our way home and continued with our plans for the day. I had decided to go back to church that night and once I had a chance to sit and think to myself I realized fort he first time in months that I had not worried our even thought about Autism for the entire day since leaving church that morning! Now that was a miracle!
Tonight as worship began, I literally felt I should give myself a giant dope slap! What was my problem? I was walking around a big ball of worry and neglecting the one being who has been there through thick and thin! Peanut had been healed in the womb! He was born without Downs Syndrome! His rapid progression with therapy and biomedical treatment is a miracle in itself! Why was I worrying? God had taken care of him so far, why would I think that he would stop now?! And so I began to thank God for the millions of blessings he has given to our family over the years.
The service finished with a long period of prayer for those hundreds of post-it's stuck on the cross. One of the Pastors wives (we have 3 Pastors) came over and prayed for me. After her prayer I felt like a new person! I felt like the final bit of my worry was gone! (Thank-you Stephanie!) I had to leave early to get home. My husband had to go to his other job by 8:00pm for a couple of hours and had nicely pushed back his appointment by an hour so I could get to church to begin with. I felt so good about things on my way home and I knew if I just prayed, God would take care of the worry for me.
Once I got home, my husband left and I decided that I was going to take the time to write what i am writing now. As I was about to sit down to type the phone rang. It was my mother in-law. She had been at church with me tonight and she said that she had to tell me something. She said that first she wanted to tell me that after I had left, the church had prayed for Jacob (which I always appreciate!). Then she told me that Maria (another member of our church) had been looking for me. Maria told my mother in-law that she felt that it was impressed upon her to pray for our struggles with Peanut and that as she prayed she felt very strongly that God was impressing upon her to tell me that everything is going to be just fine and it was "already taken care of." (Thank-you Maria and Lin-der!) I began to cry. For me, this was my confirmation. God was there for me the whole time, but the problem was, I was the one standing in the way of letting him help. Well now I've given my worry to God and I pray that it can stay that way. I'm sure there will be more worry down the road as there always is in life, but this time, I've got the faith in God I need to overcome it.
Thank-you God for all our blessings, our wonderful church family, your mercy, forgiveness and salvation, for my family and my children, and thank you for breaking through my stubborness today!
"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own." Matthew 6:33-34
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; who seeks finds; and to him who knocks, the door will be open." Matthew 7:7-8
Mommy Provost
On Friday I was at my worst. Peanut had been up all the night before so I was tired (more than usual) and extremely stressed to say the least. We went to music therapy and once we were home mommy "checked out" for the day. Of course my kids were fed and taken care of but I was so riddled with stress I couldn't do much else and so for the entire day (not typical for me) the TV was on and we did virtually nothing else.
Saturday night my husband and I sat and talked and I was able to vent all my worries and frustrations to him. We came up with a short term game plan to last us until Tuesday. I felt better, and then we went to bed. All night my sleep was restless and the worry had a hold on me again. This morning I awoke earlier than the rest of the house and paced. "What were we going to do?" "How were we going to make sure we made the right decisions." "We need to act quick or we will miss our opportunity and it will be lost to us forever!" As a mother it's such a helpless feeling to not have the answers you need to care for your child's health and future. Unfortunately with Autism there will always be unanswered questions.
Once everyone was up it was time to go to church. It's rare I'm able to actually sit in a service but thankfully today I was able to sit and hear the entire message! The message today was about prayer. It was such a great message I wish I could post it! I don't even feel I could summarize it well enough but I'll try. Our worries and fears stand between us and God. The more we worry, the bigger it gets until someday you can't see God as well and your relationship with him begins to diminish. This was my problem. Instead of focusing on God, I was focusing on Autism. What I really need to do is focus on God and trust in him to guide us through this journey with Autism. Basically we have a choice to make. We can let our worries eat us up and defeat us, blocking our path to God, or we can essentially give our worries and fears to God and live in his Peace and Love. According to the Bible doing this is a 2 step process. First you need to stop worrying and second we need to pray. This was THE message I needed to hear. The Pastor told us that today was going to be the day we made our decision. A large cross was brought to the front of the sanctuary and screwed onto the platform. He had post-it notes in every pew for all of us. He told us that if you chose to give up your worries to God then write that worry down on the post it note, bring it up to the cross and "stick it to the cross".
I made my decision. I was at the end of my rope and I knew I couldn't do this on my own anymore. It was time to let the one who DID have all the answers take over. So I took my post-it note and I wrote in big letters, "AUTISM". I walked right up to the cross and stuck it on. We all prayed and I left feeling better. We made our way home and continued with our plans for the day. I had decided to go back to church that night and once I had a chance to sit and think to myself I realized fort he first time in months that I had not worried our even thought about Autism for the entire day since leaving church that morning! Now that was a miracle!
Tonight as worship began, I literally felt I should give myself a giant dope slap! What was my problem? I was walking around a big ball of worry and neglecting the one being who has been there through thick and thin! Peanut had been healed in the womb! He was born without Downs Syndrome! His rapid progression with therapy and biomedical treatment is a miracle in itself! Why was I worrying? God had taken care of him so far, why would I think that he would stop now?! And so I began to thank God for the millions of blessings he has given to our family over the years.
The service finished with a long period of prayer for those hundreds of post-it's stuck on the cross. One of the Pastors wives (we have 3 Pastors) came over and prayed for me. After her prayer I felt like a new person! I felt like the final bit of my worry was gone! (Thank-you Stephanie!) I had to leave early to get home. My husband had to go to his other job by 8:00pm for a couple of hours and had nicely pushed back his appointment by an hour so I could get to church to begin with. I felt so good about things on my way home and I knew if I just prayed, God would take care of the worry for me.
Once I got home, my husband left and I decided that I was going to take the time to write what i am writing now. As I was about to sit down to type the phone rang. It was my mother in-law. She had been at church with me tonight and she said that she had to tell me something. She said that first she wanted to tell me that after I had left, the church had prayed for Jacob (which I always appreciate!). Then she told me that Maria (another member of our church) had been looking for me. Maria told my mother in-law that she felt that it was impressed upon her to pray for our struggles with Peanut and that as she prayed she felt very strongly that God was impressing upon her to tell me that everything is going to be just fine and it was "already taken care of." (Thank-you Maria and Lin-der!) I began to cry. For me, this was my confirmation. God was there for me the whole time, but the problem was, I was the one standing in the way of letting him help. Well now I've given my worry to God and I pray that it can stay that way. I'm sure there will be more worry down the road as there always is in life, but this time, I've got the faith in God I need to overcome it.
Thank-you God for all our blessings, our wonderful church family, your mercy, forgiveness and salvation, for my family and my children, and thank you for breaking through my stubborness today!
"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own." Matthew 6:33-34
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; who seeks finds; and to him who knocks, the door will be open." Matthew 7:7-8
Mommy Provost
Friday, March 4, 2011
"Louder than Words."
I originally was going to post about our week off from Peanut's crazy therapy schedule, but as we all know, things don't always go as planned. I started my morning as I start every morning. I got up, showered, made my coffee, got the kids up and changed their diapers, settled them on the couch with a sippy cup (jam packed with supplements, water and a splash of juice) and put on Curious George. I took up a comfy spot in our living room chair to sip my coffee and check my email, Facebook etc. This morning while on Facebook I came across an article written in "Age of Autism" called, "Doonsburys Misogynistic Cheap Shot Against Jenny Mccarthy." Something inside of me clicked, and after reading the article and I decided I was ready to know more about her story.
It is said that when a parent is told their child has Autism they go through the same stages of grief as one would go through after the death of a loved one. As a Nurse who had been educated in traditional medicine, I (initially) resisted the idea of any biomedical treatment for our son. I was against all of it. I called these parent crazy and boldly proclaimed that I would never forgo a vaccination for my child because autism couldn't kill him, but a disease could. I honestly was just scared and grossly uninformed.
Around the time that Peanut was diagnosed, my mother- in-law gave me Jenny McCarthy's book, "Louder than Words." I politely took the book and quickly tucked it onto a shelf. I had read her first two books, "Belly Laughs" and "Baby Laughs." and I loved them. I liked her honesty and call it like it is attitude. It was refreshing to hear a strong, opinionated woman get real about what life is really like. Since reading those 2 books I had heard in passing the newest developments in her life. Her son had Autism and she claimed that he was recovered and that vaccines were the devil. (I now know this is not entirely true). I, like many others out there, had my opinions tainted by what the mainstream media wanted me to think. I wasn't basing my opinions off of truth and fact, but off of the harsh and unfounded opinions of others. I think I avoided researching biomedical treatments, the vaccine debate and in particularJenny's story because I was afraid of what I would find. I got over my fear and I began to research. Now, I know more...way more. I have researched both sides of the vaccine debate, I have researched biomedical treatments and now, like many other families are now using biomedical interventions (and seeing an improvement!).
I read this article from Age of Autism (see above) and then remembered the book my mother-in-law had given me over a year ago. One of my closest friends had been gently encouraging me to read it. She had read it a long time ago and felt my son and Jenny's son had a lot in common. Every time I would tell her about the new autism treatment we were trying, she would mention the book again, and again I would shoot her down. She got the hint and patiently waited. This morning I went and found the book, and with the sound of her encouragement to read the book echoing in my head, I opened the it and began to read.
I opened the book and began to read this morning, and I finished it tonight. It sounds cliche' but to be honest, I laughed, I cried (alot) and I was absorbed into the book. I was now sympathetic with her. I felt I could understand what she was going through, and I felt she understood what we were going through as well. Her story is some what similar to ours. (Although Peanut is blessed not to suffer from epileptic seizures as Jenny's son does). I enjoyed the book. It was a nice break away form my usual technical Autism reading. It was easy to understand, non judgemental. All she does is tell her story. She makes a point to state she is not a doctor and she is not advising for or against any treatment for your child (including the vaccination issue). The only negative thing I could say about the book is that Jenny McCarthy has the mouth of a trucker. I was able to overlook this and was able to concentrate on Evan's story of his battle with the symptoms of Autism. I liked the book, and I look forward to reading the second book about her continued journey in the world of Autism. All in all, I'm glad I read the book.
As a side note, it bothers me that as a community (the "autism community") we are essentially split. We don't know the cause of Autism (there is obviously more than one cause). Not knowing the cause means we don't really know how to treat it. We all have different opinions as to what is the right thing to do and so this is where the controversy lies. We do all agree on a few things though. We agree that Autism is a Spectrum. As the saying goes, "Once you've met one child with Autism, you've met one child with Autism." Some children suffer from more severe symptoms than others, and not all people with Autism have the same symptoms. We agree that Autism is now an epidemic, not just int he US but worldwide. We agree that answers need to be found. We all want what best for our children, and we all love our children more than anything else in the world, so whats our problem? Who cares if we can't all agree! There is way to many of us out there to ever be able to agree on everything. Can't we take the high road and agree to disagree? We all need to support each other in our journey with Autism. In my opinion it's the most important thing we can do no matter what opinions we may hold. We need to start supporting each other and create a more united front. I'm not saying to put aside the debates. By all means debate away, but don't let it split us down the middle into an "us" verses "them" battle. We are all in the similar boats here. We all have to deal with the stressors and financial burdens, we all know that the resources are far and few between, we all agree that safety is an issue, the list could go on and on. This all may sound naive here but lets start by building off of what we agree on and go from there. The best thing we can do for our children is to be united.
"Be completely humble and gentle; be patient, bearing with one another in love." Ephesians 4:2
God Bless!
Mommy Provost
It is said that when a parent is told their child has Autism they go through the same stages of grief as one would go through after the death of a loved one. As a Nurse who had been educated in traditional medicine, I (initially) resisted the idea of any biomedical treatment for our son. I was against all of it. I called these parent crazy and boldly proclaimed that I would never forgo a vaccination for my child because autism couldn't kill him, but a disease could. I honestly was just scared and grossly uninformed.
Around the time that Peanut was diagnosed, my mother- in-law gave me Jenny McCarthy's book, "Louder than Words." I politely took the book and quickly tucked it onto a shelf. I had read her first two books, "Belly Laughs" and "Baby Laughs." and I loved them. I liked her honesty and call it like it is attitude. It was refreshing to hear a strong, opinionated woman get real about what life is really like. Since reading those 2 books I had heard in passing the newest developments in her life. Her son had Autism and she claimed that he was recovered and that vaccines were the devil. (I now know this is not entirely true). I, like many others out there, had my opinions tainted by what the mainstream media wanted me to think. I wasn't basing my opinions off of truth and fact, but off of the harsh and unfounded opinions of others. I think I avoided researching biomedical treatments, the vaccine debate and in particularJenny's story because I was afraid of what I would find. I got over my fear and I began to research. Now, I know more...way more. I have researched both sides of the vaccine debate, I have researched biomedical treatments and now, like many other families are now using biomedical interventions (and seeing an improvement!).
I read this article from Age of Autism (see above) and then remembered the book my mother-in-law had given me over a year ago. One of my closest friends had been gently encouraging me to read it. She had read it a long time ago and felt my son and Jenny's son had a lot in common. Every time I would tell her about the new autism treatment we were trying, she would mention the book again, and again I would shoot her down. She got the hint and patiently waited. This morning I went and found the book, and with the sound of her encouragement to read the book echoing in my head, I opened the it and began to read.
I opened the book and began to read this morning, and I finished it tonight. It sounds cliche' but to be honest, I laughed, I cried (alot) and I was absorbed into the book. I was now sympathetic with her. I felt I could understand what she was going through, and I felt she understood what we were going through as well. Her story is some what similar to ours. (Although Peanut is blessed not to suffer from epileptic seizures as Jenny's son does). I enjoyed the book. It was a nice break away form my usual technical Autism reading. It was easy to understand, non judgemental. All she does is tell her story. She makes a point to state she is not a doctor and she is not advising for or against any treatment for your child (including the vaccination issue). The only negative thing I could say about the book is that Jenny McCarthy has the mouth of a trucker. I was able to overlook this and was able to concentrate on Evan's story of his battle with the symptoms of Autism. I liked the book, and I look forward to reading the second book about her continued journey in the world of Autism. All in all, I'm glad I read the book.
As a side note, it bothers me that as a community (the "autism community") we are essentially split. We don't know the cause of Autism (there is obviously more than one cause). Not knowing the cause means we don't really know how to treat it. We all have different opinions as to what is the right thing to do and so this is where the controversy lies. We do all agree on a few things though. We agree that Autism is a Spectrum. As the saying goes, "Once you've met one child with Autism, you've met one child with Autism." Some children suffer from more severe symptoms than others, and not all people with Autism have the same symptoms. We agree that Autism is now an epidemic, not just int he US but worldwide. We agree that answers need to be found. We all want what best for our children, and we all love our children more than anything else in the world, so whats our problem? Who cares if we can't all agree! There is way to many of us out there to ever be able to agree on everything. Can't we take the high road and agree to disagree? We all need to support each other in our journey with Autism. In my opinion it's the most important thing we can do no matter what opinions we may hold. We need to start supporting each other and create a more united front. I'm not saying to put aside the debates. By all means debate away, but don't let it split us down the middle into an "us" verses "them" battle. We are all in the similar boats here. We all have to deal with the stressors and financial burdens, we all know that the resources are far and few between, we all agree that safety is an issue, the list could go on and on. This all may sound naive here but lets start by building off of what we agree on and go from there. The best thing we can do for our children is to be united.
"Be completely humble and gentle; be patient, bearing with one another in love." Ephesians 4:2
God Bless!
Mommy Provost
Wednesday, March 2, 2011
When the other shoe drops.
Have you ever heard the saying, "Waiting for the other shoe to drop." ? That's the way I think we have felt since Peanuts diagnosis. Here we had a beautiful toddler with a new diagnosis of Autism, and then we had this beautiful new baby girl. One of the first questions we had was, "What about Sassy?"
As we learned more about Autism I felt we were in the clear. She didn't show any signs and was meeting all of her developmental milestones, sometimes even earlier than expected. She spoke early, walked early, she makes eye contact, she socializes with adults and peers, she has great pretend play skills and really is a smart little girl! (Intellectual ability is not a sign of Autism, but I had to add that in there. It really does blow my mind how smart she is!) As she has gotten older and we have learned more about other disorders, such as SPD (see my 2/28/11 post), I have come to notice some things about Sassy that stuck out. She toe walks intermittently throughout the day, she demands that the radio be turned off at different points in a day, she tantrums for no reason (that I can see), she won't eat certain textures of food, she hates getting dressed, and will only agree to a diaper change standing up. She hates car seats (being strapped in), swings are difficult, she is more disagreeable when under florescent lighting, and the list goes on...
I mentioned these things to Peanuts Sensory Integration Therapist and her response surprised me. I was expecting, "That's typical 2 year old behavior, no worries mom." but the reality was, the other shoe was about to drop. His therapist took as second and then said, "Yeah, I think you might be right, I have noticed she has some issues with transition, and if it's effecting her function in the world then you should have her evaluated."
In January Sassy also began to have big stomach issues. She began to experience severe stomach distention and vomiting. These symptoms have brought us to the Emergency room with her twice (per the advice of our pediatrician). She has had xrays and ultrasounds and all they can find is an extreme amount of gas. She's on a very restricted and healthy diet and we really can find no reason for it so far. Things have improved but we have to be very careful. If she gets too much sugar, look out for Mount Vesuvius! ( Maybe a yeast issue?) So we did the over bearing parent thing and called the Pediatrician demanding a referral to a specialist.
When we were on our way to have Peanut evaluated on the day he was diagnosed, all I kept saying was, "Worst case scenario is they diagnose him with Autism, but that won't happen." On that day the world as we knew it was shattered into a million pieces. I then reserved myself to saying, "At least Sassy is okay and we don't have to worry about her!" Now a year and 2 months latter, here we are, therapy central, and we are now adding another therapy appointment, another co-pay and more doctors. Not only will Sassy begin her new therapy this month, but she will also be seeing her first Specialist. Next Tuesday we will be making the trip to see a Pediatric GI doctor to try to figure out whats wrong with her belly. If they don't help then it's off to the Naturopath we go! sigh....what can I say...that shoe has dropped and hit the floor.
On the bright side, Peanut is improving, Sassy is going to get the help for her sensory issues early, and you know what, we can do it. I'm constantly reminding myself, it could always be worse...and it definitely could be! It's fitting that the week we did Sassy's phone intake for her SI eval, and she goes off to see a specialist that our memory verse in Our Little Home School is, "I can do all things through Christ who strengthens me." Philippians 4:13. And you know what....we can.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
God Bless!
Mommy Provost
As we learned more about Autism I felt we were in the clear. She didn't show any signs and was meeting all of her developmental milestones, sometimes even earlier than expected. She spoke early, walked early, she makes eye contact, she socializes with adults and peers, she has great pretend play skills and really is a smart little girl! (Intellectual ability is not a sign of Autism, but I had to add that in there. It really does blow my mind how smart she is!) As she has gotten older and we have learned more about other disorders, such as SPD (see my 2/28/11 post), I have come to notice some things about Sassy that stuck out. She toe walks intermittently throughout the day, she demands that the radio be turned off at different points in a day, she tantrums for no reason (that I can see), she won't eat certain textures of food, she hates getting dressed, and will only agree to a diaper change standing up. She hates car seats (being strapped in), swings are difficult, she is more disagreeable when under florescent lighting, and the list goes on...
I mentioned these things to Peanuts Sensory Integration Therapist and her response surprised me. I was expecting, "That's typical 2 year old behavior, no worries mom." but the reality was, the other shoe was about to drop. His therapist took as second and then said, "Yeah, I think you might be right, I have noticed she has some issues with transition, and if it's effecting her function in the world then you should have her evaluated."
In January Sassy also began to have big stomach issues. She began to experience severe stomach distention and vomiting. These symptoms have brought us to the Emergency room with her twice (per the advice of our pediatrician). She has had xrays and ultrasounds and all they can find is an extreme amount of gas. She's on a very restricted and healthy diet and we really can find no reason for it so far. Things have improved but we have to be very careful. If she gets too much sugar, look out for Mount Vesuvius! ( Maybe a yeast issue?) So we did the over bearing parent thing and called the Pediatrician demanding a referral to a specialist.
When we were on our way to have Peanut evaluated on the day he was diagnosed, all I kept saying was, "Worst case scenario is they diagnose him with Autism, but that won't happen." On that day the world as we knew it was shattered into a million pieces. I then reserved myself to saying, "At least Sassy is okay and we don't have to worry about her!" Now a year and 2 months latter, here we are, therapy central, and we are now adding another therapy appointment, another co-pay and more doctors. Not only will Sassy begin her new therapy this month, but she will also be seeing her first Specialist. Next Tuesday we will be making the trip to see a Pediatric GI doctor to try to figure out whats wrong with her belly. If they don't help then it's off to the Naturopath we go! sigh....what can I say...that shoe has dropped and hit the floor.
On the bright side, Peanut is improving, Sassy is going to get the help for her sensory issues early, and you know what, we can do it. I'm constantly reminding myself, it could always be worse...and it definitely could be! It's fitting that the week we did Sassy's phone intake for her SI eval, and she goes off to see a specialist that our memory verse in Our Little Home School is, "I can do all things through Christ who strengthens me." Philippians 4:13. And you know what....we can.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
God Bless!
Mommy Provost
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