As I've done searches looking for Respite Care (someone to care for our loved ones with autism/special needs and their siblings so parents/caregivers can take a much needed break) I've seen a lot of articles stressing the need for respite care but very little about actual respite care services. Some states fund respite care in different ways, such as Personal Care Assistants or PCA's or in home care, specialized centers, and others. Sometimes, though, we need emergency help or more hours. In my state of SC, there is PCA services available. I also have found one church, Saxe Gothe Pres. in Lexington, that gives excellent care for free for 3 hours one Saturday per month and they care for all 3 of my children. There were others but this one fit our family the best. We found them through a great local community non-profit for families with special needs family members. It's called the Family Connection Center and it's website is www.familyconnectionsc.org. There are some states with similiar organizations. A lot of the services are free or low cost for those of us who need it. Also a great website to find a babysitter or nanny is www.care.com/specialneeds where experienced and trained caregivers are listed along with their availability and rates.
I am still looking for respite care in emergency situations.
It's always good to have a plan for respite because we all need a break in order to be the best for our family members with special needs and not.
Friday, November 23, 2012
Monday, November 5, 2012
First Family Business Bazaar
I wish I would've taken some pictures but it completely escaped my mind as we were very busy with our family's first business Bazaar! The kids and I set up shop at our church's first annual Bazaar which had 30 booths or so, of locally-owned business presenters. We had information on Signing Time products (www.signingtimeacademy.com/rondapage), Waiora products, especially Natural Celllular Defense, (www.rediscoveryourlife.com/938812) and our iPad Challenge (http://www.thepuzzlingpiece.com/products_ic.html challenger name Ronda Page). I didn't have a chance to put together anything for our Autism Awareness gift store for the Bazaar, so here it is (http://www.cafepress.com/pagesgiftsandsuch).
MJ had a great time handing out business cards, Nathan was so enthusiastic watching the Signing Time videos by signing along with Rachel and laughing contagiously with the music (everyone kept asking how much HE was to buy!) and Lydia had a great time eating the various samples the other booth owners gave out. Our PCA was a great help and we wouldn't have been able to do it without her!
I followed up today with the names we gathered and look foward to earning more income for our family!
MJ had a great time handing out business cards, Nathan was so enthusiastic watching the Signing Time videos by signing along with Rachel and laughing contagiously with the music (everyone kept asking how much HE was to buy!) and Lydia had a great time eating the various samples the other booth owners gave out. Our PCA was a great help and we wouldn't have been able to do it without her!
I followed up today with the names we gathered and look foward to earning more income for our family!
Sunday, October 28, 2012
Educational Preschool videos and toys
There have been some videos that have been key in early education for my kids that really reinforced the preschool curriculum of learning colors, shapes, ABC's, numbers/math, sight words, early reading and increasing vocabulary words. I have already mentioned Signing Time. In addition to these wonderful videos, we have had a lot of fun learning shapes, colors, letters, numbers, sight words and phonics with Preschool Prep. Company's videos of the same names. I first learned about these videos from a MOPS group when we had a "our favorite things" session and a fellow mom recommended them to all of us. Another video series along with toys and fridge magnets is Leap Frog's videos. I think the early ones are the best such as Letter Factory, The Talking Words Factory, The Code Word Caper, The Storybook Factory, and Math Circus. The newer videos didn't seem to hold my kids' attention as well. The Fridge Phonics magnets as well taught my children their abc's by sight, sound, the abc song and to be able to recognize the letters in any order.
A lot of ASD kids, are visual as well as tactile learners and all of these really reinforced their learning at such an important stage. I still play these videos for my 8 and 5 year old as reviews and they both still love them too. My 2 year old loves them and is starting his journey to learn these basics.
A lot of ASD kids, are visual as well as tactile learners and all of these really reinforced their learning at such an important stage. I still play these videos for my 8 and 5 year old as reviews and they both still love them too. My 2 year old loves them and is starting his journey to learn these basics.
Thursday, October 25, 2012
SSI/Disability benefits for children with autism and other special needs
One resource that is beneficial for low income families with children with autism and other special needs is the federal government's SSI program where if your family qualifies the children get money every month to help offset the expenses that they incur because of their disablity.
The link for SSI is http://www.socialsecurity.gov/ssi/text-child-ussi.htm and follow the instructions. Please note it is best to call and make an in-person office appointment vs. a telephone appointment, and gather all paper work in regards to doctors, therapists, early intervention, as in a IFSP, school documents, as in a IEP, etc., in order to expedite services. Some states it is harder to get than others but if you get denied the first go-around, appeals do work and if you decide to hire an SSI lawyer, a lot of times they are free unless you win and start receiving SSI benefits, then they only take a percentage of the SSI benefits you receive the first month (not after that). It's always best to do your research and read all the small print of course.
Once approved, you will need to set up a separate bank account for each child receiving SSI benefits in order to keep their expenses separate from the general household expenses. SSI can be used for anything that the child needs, such as shelter, clothing, food, and misc. expenses related to the child.
SSI benefits have kept our family from being homeless and afloat so that we are in a stable place financially. I wanted to pass along this information so if anyone else is in a similar situation, there is hope! It is a lot of paperwork and waiting but it is worth it!
The link for SSI is http://www.socialsecurity.gov/ssi/text-child-ussi.htm and follow the instructions. Please note it is best to call and make an in-person office appointment vs. a telephone appointment, and gather all paper work in regards to doctors, therapists, early intervention, as in a IFSP, school documents, as in a IEP, etc., in order to expedite services. Some states it is harder to get than others but if you get denied the first go-around, appeals do work and if you decide to hire an SSI lawyer, a lot of times they are free unless you win and start receiving SSI benefits, then they only take a percentage of the SSI benefits you receive the first month (not after that). It's always best to do your research and read all the small print of course.
Once approved, you will need to set up a separate bank account for each child receiving SSI benefits in order to keep their expenses separate from the general household expenses. SSI can be used for anything that the child needs, such as shelter, clothing, food, and misc. expenses related to the child.
SSI benefits have kept our family from being homeless and afloat so that we are in a stable place financially. I wanted to pass along this information so if anyone else is in a similar situation, there is hope! It is a lot of paperwork and waiting but it is worth it!
Tuesday, October 9, 2012
Proud of my kids and PCA's!
I am so proud of all my kids! They did so well while I was in the hospital and they were at home being taken care of by family members and friends. I am so glad that God worked everything out so the kids didn't have to be farmed out to different families. MJ has been a huge help to me with her sister and brother and to me too. She had been sleeping with me but since the surgery I had to move her to her own bed permanently. She has had a little hard time with that but I take time to give her a good back rub before she goes to bed and she settles down, especially after giving her praises for all of her help. Lydia has also been a very good child and seems to know what I can handle and what I can't. Nathan sometimes ges mad at me because I haven't been able to take him outside much and play with him but he's handling it good-naturedly for the most part.
The girls' Personal Care Assistants (PCA's) have been a huge help to me at this time in helping get the kids ready for school and after school playing with them and with some cleaning, organizing and the laundry. On Saturdays it's also nice to have an extra hand when we do different activities and Sundays getting ready for church and nap time after church since some of our family doesn't take a Sunday nap. I highly recommend getting a PCA if you are eligible wherever you live to get one. Check with your coordinator or look on the DDSN website to see if you can. It's probably best to hire a PCA yourself and put them through the agency. Care.com, special needs ( www.care.com/specialneeds) is a great resource to find that perfect care assistant, nanny or babysitter who fits well with your family. Sometimes the PCA's the agencies send out aren't trained in children with autism or special needs and it ends up being more of a burden if you don't have the right fit. But once you find great people, treat them right and you'll hopefully have them for a very long time.
The girls' Personal Care Assistants (PCA's) have been a huge help to me at this time in helping get the kids ready for school and after school playing with them and with some cleaning, organizing and the laundry. On Saturdays it's also nice to have an extra hand when we do different activities and Sundays getting ready for church and nap time after church since some of our family doesn't take a Sunday nap. I highly recommend getting a PCA if you are eligible wherever you live to get one. Check with your coordinator or look on the DDSN website to see if you can. It's probably best to hire a PCA yourself and put them through the agency. Care.com, special needs ( www.care.com/specialneeds) is a great resource to find that perfect care assistant, nanny or babysitter who fits well with your family. Sometimes the PCA's the agencies send out aren't trained in children with autism or special needs and it ends up being more of a burden if you don't have the right fit. But once you find great people, treat them right and you'll hopefully have them for a very long time.
Wednesday, August 22, 2012
Wednesday, August 15, 2012
Coffee and Music Therapy
Three out of four of us in our family LOVE coffee! The only one who doesn't is MJ. I found that Lydia would take my coffee so I started making her own cup, then Nathan started taking her coffee. So now I make him a little bit in his sippy cup. It's mostly milk and sugar and just a little coffee for the kids.
The girls have been taking music therapy this summer and they love it! They are introduced to all kinds of musical instruments and songs to sing. At the end, Nathan and I get to come sing and play too! MJ and Lydia both love the drums and the piano.
Sunday, August 5, 2012
Summer Fun with Family
Family is so important to children in general but even more so for children with autism. The kids have been able to spend some time this summer with their dad, grandparents, aunts, uncles and cousins while I recover from a medical procedure.
They've been able to play outside until their heart is content, go swimming, on little trips and also to the Music Therapist and Early Intervention (for Nathan)too. They might've even been able to play a little on Nana's keyboard and grow in music. I think that the girls have hidden musical talent and I can't wait to see how they grow in this area as I find people to help discover it and bring it out, as I am not musically inclined myself other than I like to make a joyful noise.
Nathan has really took off in walking and will be running when I get the kids back next week. That reminds me I'd better go to the next phase of child proofing the home.
I love them so much and I miss them greatly, but they've needed this time with their family. And I"m so glad they were able to do so!
They've been able to play outside until their heart is content, go swimming, on little trips and also to the Music Therapist and Early Intervention (for Nathan)too. They might've even been able to play a little on Nana's keyboard and grow in music. I think that the girls have hidden musical talent and I can't wait to see how they grow in this area as I find people to help discover it and bring it out, as I am not musically inclined myself other than I like to make a joyful noise.
Nathan has really took off in walking and will be running when I get the kids back next week. That reminds me I'd better go to the next phase of child proofing the home.
I love them so much and I miss them greatly, but they've needed this time with their family. And I"m so glad they were able to do so!
Tuesday, June 19, 2012
Update on funding for lessons for the children
Wohoo! God is so good! I got a phone call yesterday that funding through the Dept. of Disablities for the girls swimming lessons and horseback riding lessons were approved! I got an email today from the Respite Care Coalition that respite care funds are available to us. I got another phone call from a good friend of the family who will also be our nanny so I can work and get my small businesses started on the right foot and also substitute for the schools in the fall and also at the children's room for our public library. So the only thing that I am really looking for right now are iPads for the girls and apps to go with them.
They have an iPad on each of their wish lists at amazon.com.
They have an iPad on each of their wish lists at amazon.com.
Saturday, June 16, 2012
Team Page Family is raising funds to help the children with autism and developmental delays become all they were meant to be! Join us in this endeavor by donating to assist in purchasing much needed products and services! We are looking to purchase iPads, apps, lessons for dance, swim, gymnastics, and horseback riding. Thank you for considering us when choosing where your donation funds go!
Sincerely,
Ronda Page
https://www.wepay.com/x1upqnk/donations/team-page-family-autism-fund
Sincerely,
Ronda Page
https://www.wepay.com/x1upqnk/donations/team-page-family-autism-fund
Wednesday, May 30, 2012
Sensory Friendly Films and AMC theaters
The following description on the AMC website describes it better than I can.
http://www.amctheatres.com/programs/sensory-friendly-films
There's a list of movies, dates, times and cities on the website. Look for one near you! We love going to these viewings!
The idea for the program began with a request from a parent with an autistic child for a special screening at AMC Columbia Mall 14 in Columbia, MD. More than 300 children and parents attended the first screening.
We are thrilled to now offer the program at many locations nationwide — please see below for a complete list of participating theatres. As a leading theatrical exhibition company, we are so proud to be making a difference in the estimated 1.5 million Americans living with an autism spectrum disorder by offering families a chance to see a movie together — often for the very first time.
http://www.amctheatres.com/programs/sensory-friendly-films
There's a list of movies, dates, times and cities on the website. Look for one near you! We love going to these viewings!
In Partnership with the Autism Society, We Bring AMC Sensory Friendly Films to Families Affected by Autism on a Monthly Basis to Select Communities.
The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!The idea for the program began with a request from a parent with an autistic child for a special screening at AMC Columbia Mall 14 in Columbia, MD. More than 300 children and parents attended the first screening.
We are thrilled to now offer the program at many locations nationwide — please see below for a complete list of participating theatres. As a leading theatrical exhibition company, we are so proud to be making a difference in the estimated 1.5 million Americans living with an autism spectrum disorder by offering families a chance to see a movie together — often for the very first time.
The iPad and autism
There are voluminous articles and research on how the iPad helps individuals with autism from communication to academics. There are PECS apps that you can get that has the picture (I
think you can upload pictures also), word and says the sentence too. At
lease from what I've heard anyway. We don't have any type of tablet so
we are definitely behind in technology. The iPad has been very
instrumental in helping children with autism with speech and
communication especially. I've been trying to get both girls one each
through fundraisers, grants, etc. but no luck yet. We can't afford one
ourselves. The Autism Speaks website has some great recommendations for
apps. Here's the website.
If you do a google search for Autism iPad apps there are a lot of resources available. The iPad is on my much sought after list. So hopefully soon I can do an insiders look at how the iPad helps our children with autism. MJ is already very familiar with both the iPad and iPod as teachers and parents at her schools have allowed her to use one as well as the other students. I've never even touched one. That really bothers me since I have a Communications degree and all. Have you used an iPad with your children? How has it helped you?
Here are some website that assist in fundraising or grants to assist in getting an iPad.
Grant
http://www.letschatautism.com/ipads-for-autism-application/
Grants for iPads occasionally but also grants for emergency situations
http://www.autismcares.org/site/c.mqLOIYOBKlF/b.4745901/k.BD21/Home.htm
Fundraising for an iPad
http://thepuzzlingpiece.com/
iPad apps
http://www.autismspeaks.org/family-services/autism-apps
If you do a google search for Autism iPad apps there are a lot of resources available. The iPad is on my much sought after list. So hopefully soon I can do an insiders look at how the iPad helps our children with autism. MJ is already very familiar with both the iPad and iPod as teachers and parents at her schools have allowed her to use one as well as the other students. I've never even touched one. That really bothers me since I have a Communications degree and all. Have you used an iPad with your children? How has it helped you?
Here are some website that assist in fundraising or grants to assist in getting an iPad.
Grant
http://www.letschatautism.com/ipads-for-autism-application/
Grants for iPads occasionally but also grants for emergency situations
http://www.autismcares.org/site/c.mqLOIYOBKlF/b.4745901/k.BD21/Home.htm
Fundraising for an iPad
http://thepuzzlingpiece.com/
iPad apps
http://www.autismspeaks.org/family-services/autism-apps
Monday, May 28, 2012
Immunizations and Detoxins
Based on the girls development immediately after receiving their immunizations, I feel that our family has a genetic factor that reacts with the immunizations causing autism. It could be the metal preservatives or the actual immunizations itself, but either way whatever is in them is toxic to our family. When MJ got her first set of shots, I read through the paperwork and it mentioned as a side effect a "temporary developmental delay". For my children, it's been permanent delays.
When I saw that there were metals such as mercury and aluminum used as preservatives (after the fact of course) I realized that probably has a huge play into the girls autism. There are metal allergies on both my and their dad's sides of the family. So I began looking for a natural detoxin. There are controversies within this area but I knew that the girls needed this.
It's amazing on how God answers our prayers. While living out West, one of my friends mentioned she ran into a lady who told her about a product that is a natural detoxin called Natural Cellular Defense and how it had helped her family with allergies, adhd and also other families with autism. She gave my friend her business card who in turn emailed me the website info. I immediately checked it out and saw for myself that it was natural and nontoxic, which is very important to me. I have been very reluctant to try medicine with the awful side effects including heart problems and death. The info on the website seemed to check out, so I figured it was at lease worth a try. So I ordered my first bottle of Natural Cellular Defense for the girls. It came quickly and with some information to read also. So I gave the girls their first dose. This one bottle was going to be the test if we ordered more or not. Within a couple of HOURS I noticed a difference! And within a month, MJ's school noticed a difference and called for a meeting and asked me what we were doing differently at home! I knew right then that this product is a must for our family. However due to our income situation I haven't been able to order it every month and can only order it when I can. I signed up to get it at wholesale prices to save some money and that also came with the privilege of being able to pass along the info on the product and gain some profits from the sales I make. Right now I am just thankful to get a pretty decent discount.
I wish I could give everyone who has a family member with autism a bottle for free and maybe one day I can! In the meantime I can at least pass along the info and if anyone would ever like to try a bottle of Natural Cellular Defense here's my website. http://www.rediscoveryourlife.com/938812
When I saw that there were metals such as mercury and aluminum used as preservatives (after the fact of course) I realized that probably has a huge play into the girls autism. There are metal allergies on both my and their dad's sides of the family. So I began looking for a natural detoxin. There are controversies within this area but I knew that the girls needed this.
It's amazing on how God answers our prayers. While living out West, one of my friends mentioned she ran into a lady who told her about a product that is a natural detoxin called Natural Cellular Defense and how it had helped her family with allergies, adhd and also other families with autism. She gave my friend her business card who in turn emailed me the website info. I immediately checked it out and saw for myself that it was natural and nontoxic, which is very important to me. I have been very reluctant to try medicine with the awful side effects including heart problems and death. The info on the website seemed to check out, so I figured it was at lease worth a try. So I ordered my first bottle of Natural Cellular Defense for the girls. It came quickly and with some information to read also. So I gave the girls their first dose. This one bottle was going to be the test if we ordered more or not. Within a couple of HOURS I noticed a difference! And within a month, MJ's school noticed a difference and called for a meeting and asked me what we were doing differently at home! I knew right then that this product is a must for our family. However due to our income situation I haven't been able to order it every month and can only order it when I can. I signed up to get it at wholesale prices to save some money and that also came with the privilege of being able to pass along the info on the product and gain some profits from the sales I make. Right now I am just thankful to get a pretty decent discount.
I wish I could give everyone who has a family member with autism a bottle for free and maybe one day I can! In the meantime I can at least pass along the info and if anyone would ever like to try a bottle of Natural Cellular Defense here's my website. http://www.rediscoveryourlife.com/938812
Saturday, April 14, 2012
Communicating with my children
Both of my girls and Nathan have been speech delayed. MJ is very verbal now and Lydia is picking up words. While they were/are struggling with speech, we found alternative ways to communicate. The first was "Baby Signs" but then I quickly moved to traditional American Sign Language (ASL) so as to use a real language and not risk offending someone with made up signs. I took an ASL class in college and wish I would've have continued in taking more classes. However, I found a great resource at the library and at the time it was also on public television. It was the DVD series called Signing Time!. MJ especially loved the shows and rapidly increased her vocabulary both in sign and in speech. She still watches them to this day.
Lydia also loves watching Signing Time and I believe it has helped her receptive language a lot. The preschool in Utah found that Lydia does better with the Picture Exchange Communication System (PECS) for expressive language. This system uses pictures with words on cards and boards with velcro on them to create sentences with the pictures. The teacher or adult hands the child the picture cards and whatever they are trying to communicate, that card is given back to the teacher or placed on the board. For example, "Lydia, would you like milk or juice?". The milk and juice cards are handed to Lydia and she gives back the card for whichever choice she made. In this case, Lydia handed back the milk card as her choice.
It was hard for me to accept that Lydia did better with PECS and to implement it in our home because it's just plain inconvenient to carry all those cards and PECS book. I finally gave in though and the school made a PECS book for home and helped with a PECS Schedule board also. The PECs Schedule board helps the children know what to expect during their routines of the day. MJ and Lydia both love schedule boards and it helps them especially for school.
I am using ASL with Nathan too. He has picked up some and we are watching the Baby Signing Time series made by the same company that created Signing Time.
MJ seems to have a lot of meltdowns when she feels misunderstood. One of the autism specialists mentioned that MJ feels everyone can read her mind and know what she's doing/wants. I hadn't ever thought of that before. Whenever meltdowns happen, I found out that if I ask MJ what is going on and how can I help vs. disciplining for the outburst, that it's usually a simple fix. If it isn't then I repeat MJ's request and tell her I understand how she feels but we cannot do her request and then state the reason as simply as possible. She's usually very reasonable after knowing that she's been listened to, understood, her feelings cared about and that she is loved. If discipline is given as the first response, it hurts MJ and she acts out even worse because she feels unloved and not heard. She thinks people are just being mean and ugly to her for no reason. I've noticed this is the case with a lot of children with autism.
It takes a lot of effort to get to the heart of the issue vs. disciplining outward behavior, even with typical children. One book that was given to us that has helped me understand this is Shepherding a Child's Heart by Ted Tripp. It talks about the root of the behavior verses the behavior itself. Pharisees are created when just outward behavior is addressed verses addressing the heart of the issue. I've seen very respectful and behaved children/teenagers/adults to their elders/authority but underneath that they have wicked hearts. I'd much rather have honest children who know it's ok to be themselves with me and with God too. That means that I better be prepared for the truth too and be gracious no matter what that might be and prayerful to God to ask the best way to handle the situation. It seems that the Mr./Ms. Innocents are the ones that get into the most trouble. Simply because they've mastered the art of outward appearances and the parents didn't take the time to dig deeper and pour into their lives. I pray everyday that I can be a shepherd vs. a Pharisee. That takes communication, the art of listening and speaking, a give AND a take, in a meaningful conversation. Not merely a lecture or punishment.
Lydia also loves watching Signing Time and I believe it has helped her receptive language a lot. The preschool in Utah found that Lydia does better with the Picture Exchange Communication System (PECS) for expressive language. This system uses pictures with words on cards and boards with velcro on them to create sentences with the pictures. The teacher or adult hands the child the picture cards and whatever they are trying to communicate, that card is given back to the teacher or placed on the board. For example, "Lydia, would you like milk or juice?". The milk and juice cards are handed to Lydia and she gives back the card for whichever choice she made. In this case, Lydia handed back the milk card as her choice.
It was hard for me to accept that Lydia did better with PECS and to implement it in our home because it's just plain inconvenient to carry all those cards and PECS book. I finally gave in though and the school made a PECS book for home and helped with a PECS Schedule board also. The PECs Schedule board helps the children know what to expect during their routines of the day. MJ and Lydia both love schedule boards and it helps them especially for school.
I am using ASL with Nathan too. He has picked up some and we are watching the Baby Signing Time series made by the same company that created Signing Time.
MJ seems to have a lot of meltdowns when she feels misunderstood. One of the autism specialists mentioned that MJ feels everyone can read her mind and know what she's doing/wants. I hadn't ever thought of that before. Whenever meltdowns happen, I found out that if I ask MJ what is going on and how can I help vs. disciplining for the outburst, that it's usually a simple fix. If it isn't then I repeat MJ's request and tell her I understand how she feels but we cannot do her request and then state the reason as simply as possible. She's usually very reasonable after knowing that she's been listened to, understood, her feelings cared about and that she is loved. If discipline is given as the first response, it hurts MJ and she acts out even worse because she feels unloved and not heard. She thinks people are just being mean and ugly to her for no reason. I've noticed this is the case with a lot of children with autism.
It takes a lot of effort to get to the heart of the issue vs. disciplining outward behavior, even with typical children. One book that was given to us that has helped me understand this is Shepherding a Child's Heart by Ted Tripp. It talks about the root of the behavior verses the behavior itself. Pharisees are created when just outward behavior is addressed verses addressing the heart of the issue. I've seen very respectful and behaved children/teenagers/adults to their elders/authority but underneath that they have wicked hearts. I'd much rather have honest children who know it's ok to be themselves with me and with God too. That means that I better be prepared for the truth too and be gracious no matter what that might be and prayerful to God to ask the best way to handle the situation. It seems that the Mr./Ms. Innocents are the ones that get into the most trouble. Simply because they've mastered the art of outward appearances and the parents didn't take the time to dig deeper and pour into their lives. I pray everyday that I can be a shepherd vs. a Pharisee. That takes communication, the art of listening and speaking, a give AND a take, in a meaningful conversation. Not merely a lecture or punishment.
Tuesday, April 10, 2012
Today's resources
Bible References
Jesus in the home of a leper. Mathew 26:6
Jesus recounts those who have been healed Matthew 11:5
The command to heal those who are sick Matthew 10:8
10 Lepers healed Luke 17:10-12
The Good News EVERYONE needs to know! John 3:16, 1 John 3:1, 1 John 3:16
Our home church Christian Life Church (Assembly)
Contact Pastor Frank Trezoglou regarding the Special Needs children's ministry Hands and Feet.
Lepers of today and Jesus
Just a little of our family background to set the context of this. I became a Christian at at the age of 20 and came from a non-Christian background. I moved at the age of 22 to the Bible Belt very specifically to grow in my relationship with Jesus and to learn from seasoned Christians. I was able to also attend Bible College and graduated with a Bachelors in Bible and Communications. My husband and I met at a single's Bible study at church. My husband has been around Christianity his whole life. All this to say that Jesus is a very important person in my life and His family, my family.After college, my husband moved our family out west to a state that challenges Christian marriages and families in general, let alone those with special needs family members. I never ever would have imagined not being able to attend church and fellowship with other believers in America.
As my children with autism got older, they became harder to manage at church. We experienced the same things most special needs families do. We got kicked out of church, much like the lepers were kicked out of synagogues and cities. We were told over and over again "we are not equipped", as if that would explain it away. We always came back with "let's get equipped and we'll help you." We were sent away time and again. Once we were told "we have all these people to lead to God and you're in the way".
We were living out west in a state that doesn't have a lot of Christian churches anyway, so we started having car church, where we would go for a drive, listen to praise and worship music, pray, read the Bible and listen to a sermon from our home church. We tried church after church, one advertised a special needs ministry. We came to find out it was one military couple volunteering to babysit during church and whenever they couldn't do it, we were told we couldn't come to church. The church and the couple refused to read even a 2 minute Bible story to the kids in the SUNDAY SCHOOL class. All other kids were learning about Jesus in the building and classes all around them, NOT my kids. This became unacceptable to us, we approached the church to see what we could do to help. We then were asked to leave. Other churches said we were welcomed as long as we stayed with the kids in their classrooms. Car or home church was easier on us but we lacked fellowship.
Throughout all this I kept Jesus as the center of our home and struggled (still struggling) to forgive those who dismissed us so easily as not important enough to bring into God's family. I prayed to go back to the Bible Belt and our home church because I knew they would make a way.
God answered my prayers last year. Not in the way, I hoped, as our family is now split. The kids and I are back home and our church family has bent over backwards helping us. They got equipped and now have a special needs MINISTRY and the kids are learning about Jesus from the Bible, worshiping, praying and even dancing before His throne!
As I've visited other churches with Special Needs classes, I've noticed that most are simply babysitting the kids and not actively teaching the kids about Jesus or reading them the Bible. This evangelist and Bible College grad could not accept this for my children. It takes a village to raise a child. It takes 3 villages to raise a special needs child and very purposefully doing all we can to truly give the child wings! This includes teaching about Jesus. I am so very very thankful for my home church for being our family and our villages.
The miracles in the Bible that we read are all healing of special needs people. The ones kicked out of the churches who Jesus went to personally, healed them and shared the good news with them! The church that wants to see revival and miracles is the one that ministers to special needs people because Jesus came to save the ones who are sick not the ones who are well. The Remnant is made up of churches rolling up our sleeves, literally getting dirty and deep into ministry to special needs people of all types. The highest calling is do to do the lowliest duty of preaching Jesus while changing diapers of all ages. The pastor/person that can serve a special needs person in any capacity is the one that will see the miracles and revival happen.
Bible references
Jesus in the home of a leper. Mathew 26:6
Jesus recounts those who have been healed Matthew 11:5
The command to heal those who are sick Matthew 10:8
10 Lepers healed Luke 17:10-12
As my children with autism got older, they became harder to manage at church. We experienced the same things most special needs families do. We got kicked out of church, much like the lepers were kicked out of synagogues and cities. We were told over and over again "we are not equipped", as if that would explain it away. We always came back with "let's get equipped and we'll help you." We were sent away time and again. Once we were told "we have all these people to lead to God and you're in the way".
We were living out west in a state that doesn't have a lot of Christian churches anyway, so we started having car church, where we would go for a drive, listen to praise and worship music, pray, read the Bible and listen to a sermon from our home church. We tried church after church, one advertised a special needs ministry. We came to find out it was one military couple volunteering to babysit during church and whenever they couldn't do it, we were told we couldn't come to church. The church and the couple refused to read even a 2 minute Bible story to the kids in the SUNDAY SCHOOL class. All other kids were learning about Jesus in the building and classes all around them, NOT my kids. This became unacceptable to us, we approached the church to see what we could do to help. We then were asked to leave. Other churches said we were welcomed as long as we stayed with the kids in their classrooms. Car or home church was easier on us but we lacked fellowship.
Throughout all this I kept Jesus as the center of our home and struggled (still struggling) to forgive those who dismissed us so easily as not important enough to bring into God's family. I prayed to go back to the Bible Belt and our home church because I knew they would make a way.
God answered my prayers last year. Not in the way, I hoped, as our family is now split. The kids and I are back home and our church family has bent over backwards helping us. They got equipped and now have a special needs MINISTRY and the kids are learning about Jesus from the Bible, worshiping, praying and even dancing before His throne!
As I've visited other churches with Special Needs classes, I've noticed that most are simply babysitting the kids and not actively teaching the kids about Jesus or reading them the Bible. This evangelist and Bible College grad could not accept this for my children. It takes a village to raise a child. It takes 3 villages to raise a special needs child and very purposefully doing all we can to truly give the child wings! This includes teaching about Jesus. I am so very very thankful for my home church for being our family and our villages.
The miracles in the Bible that we read are all healing of special needs people. The ones kicked out of the churches who Jesus went to personally, healed them and shared the good news with them! The church that wants to see revival and miracles is the one that ministers to special needs people because Jesus came to save the ones who are sick not the ones who are well. The Remnant is made up of churches rolling up our sleeves, literally getting dirty and deep into ministry to special needs people of all types. The highest calling is do to do the lowliest duty of preaching Jesus while changing diapers of all ages. The pastor/person that can serve a special needs person in any capacity is the one that will see the miracles and revival happen.
Bible references
Jesus in the home of a leper. Mathew 26:6
Jesus recounts those who have been healed Matthew 11:5
The command to heal those who are sick Matthew 10:8
10 Lepers healed Luke 17:10-12
Tuesday, March 20, 2012
Today's resources
RESOURCES MENTIONED IN TODAY'S BLOG
1.. State Early Intervention Services (in SC BabyNet, in Utah Baby Watch, every state has one just do a google search to find yours) which provides evaluations, in home Occupational Therapy, Physical Therapy, Speech Therapy, ABA Therapy and consulting services on a free or sliding income scale. Other therapies and services available also.
2. Palmetto Pediatrics Special Needs
3.Immunizations Info.
4.Bumbo chair
5.Texture teethers and vibrating teethers
6.Weighted/compression vest
7. Therapy brush
8. Chewy
9. Jogging Trampoline
10. Tent or play hut
11. Prevacid for children for acid reflux (prescription)
12. Silk Soy Milk or Lactaid Milk for lactose intolerance
13.Soy yogurt that tastes good
14.Autism symptoms
15. ADHD symptoms
16. Hypoglycemia symptoms
17. VSD and ASD (holes in the heart) info.
18.Radioulnar synostosis
19. Lactose Intolerance symptoms
20. Acid reflux symptoms in babies (including "silent symptoms"
1.. State Early Intervention Services (in SC BabyNet, in Utah Baby Watch, every state has one just do a google search to find yours) which provides evaluations, in home Occupational Therapy, Physical Therapy, Speech Therapy, ABA Therapy and consulting services on a free or sliding income scale. Other therapies and services available also.
2. Palmetto Pediatrics Special Needs
3.Immunizations Info.
4.Bumbo chair
5.Texture teethers and vibrating teethers
6.Weighted/compression vest
7. Therapy brush
8. Chewy
9. Jogging Trampoline
10. Tent or play hut
11. Prevacid for children for acid reflux (prescription)
12. Silk Soy Milk or Lactaid Milk for lactose intolerance
13.Soy yogurt that tastes good
14.Autism symptoms
15. ADHD symptoms
16. Hypoglycemia symptoms
17. VSD and ASD (holes in the heart) info.
18.Radioulnar synostosis
19. Lactose Intolerance symptoms
20. Acid reflux symptoms in babies (including "silent symptoms"
2 Princesses and a Prince
Miriam (MJ)and Lydia, my 7 and 5 year old little princesses, both have autism. Jonathan (Nathan), my little 18 month old prince is typically developing other than still cruising the furniture instead of walking.
Lydia was diagnosed with autism at age 2 (and before MJ) even though she didn't show any signs of developmental delay until her 18 month shots. MJ was diagnosed with autism at age 5, but she showed signs of developmental delay after 4 month shots. I had slowed down the immunization schedule with Lydia after seeing MJ's delays.
MJ was rolling over right on schedule, then immediately after her 4 months shots she stopped. She didn't sit up at 6 months or even 8 months. It was at that time she was evaluated for early intervention and we found she was delayed in her speech, gross motor (ie crawling) and fine motor because of radial ulnar synostosis (her bones are fused at the elbow and wrist on both arms. Inherited from her daddy, he has it on one arm.) Early Intervention started their services and thanks to then-only-therapy bumbo chair, (now you can get the bumbo chair anywhere) MJ started sitting, crawling and cruising all in 3 weeks time. She then started walking at 16 months. Speech helped with her sensory issues with food textures and building vocabulary through action, reading stories, and songs. We also found out she had acid reflux in addition to lactose intolerance. MJ's first pedatrician didn't work out for several reason, such as non-support for nursing, a prescription for OT for MJ's arms without x-rays (which we ended up getting x-rays due to a car accident but the technician read them wrong at the hospital and the pediatrician didn't even look at them herself, the OT suggested an orthapedic surgeon to read the x-rays, which within five minutes saw the diagnosis.), prescribing juice to a 2 month old for constipation problems, and the last straw was calling me a paranoid mama for asking about things I saw. After that I promptly got referrals from friends for a new pediatrician. We found a good clinic and I picked the doctor because his last name was the same as some neighbors of ours, who we felt like they were family. Not the most scientific way but he's been a good doctor and we went back to him after moving back South Carolina. He promptly put MJ on soy milk which cleared up her constipation, ordered tests, and helped to find in-home early intervention (it's called Baby Net in South Carolina, their charges are on a sliding scale and free if the child is on Medicaid) after I found out from one of my friends about it. So in about 2 years time, we found out that MJ had lactose intolerance, acid reflux, radial-ulnar synostosis, speech delays, motor delays, and sensory issues including seeking out sensory input and avoiding loud noises especially. So she received Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST) and Intervention Consulting. She is highly social which delayed the diagnosis of autism until she was 5 years old. When MJ was 2 years old she graduated from PT and we moved from South Carolina to Utah. Her sister Lydia was born in December of this year. She continued early intervention services with Occupational Therapy, Speech Therapy and intervention services until age 3, then she moved to preschool. She was mainstreamed with a few special needs children in the classroom, then moved to reverse mainstream with a few typically developing children and mostly special needs, then ended up in a self-contained special ed classroom due to the sheer number of children, the sensitivity to loud classrooms, and constant need for one on one attention. It was during one of my visits to the preschool that I noticed that MJ started acting out right before snack time and she calmed down right after she ate. So I talked with the doctor and mentioned that I thought she exhibited signs of hypoglycemia (low blood sugar- I have it too), so he prescribed snacks every 2 hours for when she started kindergarten. At age 5, MJ started kindergarten half-days to begin with because she still napped in the afternoons. Then mid-year she grew out of her naps and started attending full-day. We had moved to a different city in Utah so this was another change for her and us. It was while we were here that we had MJ tested through the University and she received a diagnosis of autism and ADHD. The summer after that we moved back to the area we were in originally in Utah. Nathan was born the first day of school, August 24th. MJ attended first grade in a life skills class. It took a while but after sitting with the special needs team we came up with plans that included a huge "sensory diet" to help MJ with her sensory seeking. The sensory diet included a trampoline, a chewy (she still mouths things), a weighted vest, a soft brush to brush her arms, deep pressure massage, a tent for a quiet area to take a break and some others that I can't remember. Also a change in the assistant helping her made a huge difference. During this time, our home was in turmoil, which is another story all together but it made things more difficult for MJ. This past summer the kids and I moved back to South Carolina. MJ is now in 2nd grade and now we are working through the process of once again getting the sensory diet and additional assistants in the classroom. I am done with moving and pray for no more school changes. MJ is a happy girl, loves playing outside, and even taught herself how to ride a bike. She loves her sister and her brother and playing with "kids" as she calls children. She's a daddy's girl and loves anything he does.
Lydia was typically developing and reached her rolling, crawling, walking, and talking milestones all within normal time frames until she was 24 months old. She also had acid reflux and lactose intolerance since birth. Both girls have now outgrown both acid reflux and lactose intolerance.I had slowed down the shot schedule with her due to MJ's delays. However, daddy took Lydia to her 18 month old well-visit (we took her a little late at 20 months) and she came back from that visit with more shots than I indicated she needed. Right after that, Lydia lost all of her words and showed sensory processing issues as well as fears of loud noises and claustrophobia. She started rocking back and forth, and became very introverted. Lydia has always been my empathetic child and she never ever lost that, which I am so thankful for. So Lydia also started receiving early intervention services of speech and consulting. (In Utah, it's called Baby Watch) She didn't need PT or OT. (she doesn't have radial-ulnar synostosis). During this time she received her diagnosis of autism. She showed more classic signs of autism than MJ so she was able to receive her diagnosis relatively easy. She also went to preschool starting at age 3 years old. As Lydia has gotten older some new symptoms of autism has crept up, such as holding her fingers in the shape of a pinhole to look through it as through a telescope, laughing inappropriately, repetitive behaviors such as rocking and running back and forth. Also going from toy, to chair, to trampoline, to shutting a cabinet door, to the trash can, over and over again. She loves her blanket she named "kiki". She's had kiki since she was 2 weeks old, it was a gift from a distant family member. She loves riding her little ride on car outside and is a runner so when we are outside, running errands or traveling she is on a harness back pack. She's also a climber and a little gymnast. She is very strong and agile. She loves coffee with lots of cream and sugar. She's a mama's girl.
Nathan was born with some minor complications. His lungs took a little while to expand and that was recognized because he was "humming" for 2 days. He left the hospital with just a little jaundice but nothing to stay in for. Then at his well visit at 5 days old we noticed he was a lot more yellow. Doctor also heard a heart murmur. So he sent him back to the hospital to be put under bili lights, to get an echocardiogram and for me to nurse him every two hours with no skips whatsoever. Nathan responded well to bili treatment and nursing so he was sent home 24 hours later. The echocardiogram showed two little holes in his heart one in the upper chamber (ASD) and one in the lower chamber (VSD) The upper one most people have any way and is considered somewhat normal, the lower one is not. We were informed that they could close up but even if they didn't he could still lead a normal life. He had a follow-up at 10 months and no heart murmur was found. So just one more follow-up and if all is clear, his heart case will be closed. Praise God for literally healing Nathan's heart!
Nathan has had only 1 shot and even then I questioned after getting it because he cried for days after. He's been probably only about 1 month or so behind in reaching most milestones but not enough to warrant early intervention as of yet. He is very social and captures everyone's heart that he meets. I am going to have to get a gun to keep the girls away from him! He loves Lydia and where she's at, he is. And doing whatever she's doing. Even if she doesn't pay him any attention. When we were bringing Nathan home from the hospital when he was born, as we put him next to Lydia in the car, she started crying! I said "and so it begins! The sibling rivalry!" I think Nathan has been trying to get her approval ever since! MJ loves him and interacts well with him too and is a good big sister to both Lydia and Nathan. Lydia has the unique opportunity to be both little and big sister and Nathan the only brother and baby.
So here we are now having our triumphs and struggles. God has seen us through it all!
Lydia was diagnosed with autism at age 2 (and before MJ) even though she didn't show any signs of developmental delay until her 18 month shots. MJ was diagnosed with autism at age 5, but she showed signs of developmental delay after 4 month shots. I had slowed down the immunization schedule with Lydia after seeing MJ's delays.
MJ was rolling over right on schedule, then immediately after her 4 months shots she stopped. She didn't sit up at 6 months or even 8 months. It was at that time she was evaluated for early intervention and we found she was delayed in her speech, gross motor (ie crawling) and fine motor because of radial ulnar synostosis (her bones are fused at the elbow and wrist on both arms. Inherited from her daddy, he has it on one arm.) Early Intervention started their services and thanks to then-only-therapy bumbo chair, (now you can get the bumbo chair anywhere) MJ started sitting, crawling and cruising all in 3 weeks time. She then started walking at 16 months. Speech helped with her sensory issues with food textures and building vocabulary through action, reading stories, and songs. We also found out she had acid reflux in addition to lactose intolerance. MJ's first pedatrician didn't work out for several reason, such as non-support for nursing, a prescription for OT for MJ's arms without x-rays (which we ended up getting x-rays due to a car accident but the technician read them wrong at the hospital and the pediatrician didn't even look at them herself, the OT suggested an orthapedic surgeon to read the x-rays, which within five minutes saw the diagnosis.), prescribing juice to a 2 month old for constipation problems, and the last straw was calling me a paranoid mama for asking about things I saw. After that I promptly got referrals from friends for a new pediatrician. We found a good clinic and I picked the doctor because his last name was the same as some neighbors of ours, who we felt like they were family. Not the most scientific way but he's been a good doctor and we went back to him after moving back South Carolina. He promptly put MJ on soy milk which cleared up her constipation, ordered tests, and helped to find in-home early intervention (it's called Baby Net in South Carolina, their charges are on a sliding scale and free if the child is on Medicaid) after I found out from one of my friends about it. So in about 2 years time, we found out that MJ had lactose intolerance, acid reflux, radial-ulnar synostosis, speech delays, motor delays, and sensory issues including seeking out sensory input and avoiding loud noises especially. So she received Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST) and Intervention Consulting. She is highly social which delayed the diagnosis of autism until she was 5 years old. When MJ was 2 years old she graduated from PT and we moved from South Carolina to Utah. Her sister Lydia was born in December of this year. She continued early intervention services with Occupational Therapy, Speech Therapy and intervention services until age 3, then she moved to preschool. She was mainstreamed with a few special needs children in the classroom, then moved to reverse mainstream with a few typically developing children and mostly special needs, then ended up in a self-contained special ed classroom due to the sheer number of children, the sensitivity to loud classrooms, and constant need for one on one attention. It was during one of my visits to the preschool that I noticed that MJ started acting out right before snack time and she calmed down right after she ate. So I talked with the doctor and mentioned that I thought she exhibited signs of hypoglycemia (low blood sugar- I have it too), so he prescribed snacks every 2 hours for when she started kindergarten. At age 5, MJ started kindergarten half-days to begin with because she still napped in the afternoons. Then mid-year she grew out of her naps and started attending full-day. We had moved to a different city in Utah so this was another change for her and us. It was while we were here that we had MJ tested through the University and she received a diagnosis of autism and ADHD. The summer after that we moved back to the area we were in originally in Utah. Nathan was born the first day of school, August 24th. MJ attended first grade in a life skills class. It took a while but after sitting with the special needs team we came up with plans that included a huge "sensory diet" to help MJ with her sensory seeking. The sensory diet included a trampoline, a chewy (she still mouths things), a weighted vest, a soft brush to brush her arms, deep pressure massage, a tent for a quiet area to take a break and some others that I can't remember. Also a change in the assistant helping her made a huge difference. During this time, our home was in turmoil, which is another story all together but it made things more difficult for MJ. This past summer the kids and I moved back to South Carolina. MJ is now in 2nd grade and now we are working through the process of once again getting the sensory diet and additional assistants in the classroom. I am done with moving and pray for no more school changes. MJ is a happy girl, loves playing outside, and even taught herself how to ride a bike. She loves her sister and her brother and playing with "kids" as she calls children. She's a daddy's girl and loves anything he does.
Lydia was typically developing and reached her rolling, crawling, walking, and talking milestones all within normal time frames until she was 24 months old. She also had acid reflux and lactose intolerance since birth. Both girls have now outgrown both acid reflux and lactose intolerance.I had slowed down the shot schedule with her due to MJ's delays. However, daddy took Lydia to her 18 month old well-visit (we took her a little late at 20 months) and she came back from that visit with more shots than I indicated she needed. Right after that, Lydia lost all of her words and showed sensory processing issues as well as fears of loud noises and claustrophobia. She started rocking back and forth, and became very introverted. Lydia has always been my empathetic child and she never ever lost that, which I am so thankful for. So Lydia also started receiving early intervention services of speech and consulting. (In Utah, it's called Baby Watch) She didn't need PT or OT. (she doesn't have radial-ulnar synostosis). During this time she received her diagnosis of autism. She showed more classic signs of autism than MJ so she was able to receive her diagnosis relatively easy. She also went to preschool starting at age 3 years old. As Lydia has gotten older some new symptoms of autism has crept up, such as holding her fingers in the shape of a pinhole to look through it as through a telescope, laughing inappropriately, repetitive behaviors such as rocking and running back and forth. Also going from toy, to chair, to trampoline, to shutting a cabinet door, to the trash can, over and over again. She loves her blanket she named "kiki". She's had kiki since she was 2 weeks old, it was a gift from a distant family member. She loves riding her little ride on car outside and is a runner so when we are outside, running errands or traveling she is on a harness back pack. She's also a climber and a little gymnast. She is very strong and agile. She loves coffee with lots of cream and sugar. She's a mama's girl.
Nathan was born with some minor complications. His lungs took a little while to expand and that was recognized because he was "humming" for 2 days. He left the hospital with just a little jaundice but nothing to stay in for. Then at his well visit at 5 days old we noticed he was a lot more yellow. Doctor also heard a heart murmur. So he sent him back to the hospital to be put under bili lights, to get an echocardiogram and for me to nurse him every two hours with no skips whatsoever. Nathan responded well to bili treatment and nursing so he was sent home 24 hours later. The echocardiogram showed two little holes in his heart one in the upper chamber (ASD) and one in the lower chamber (VSD) The upper one most people have any way and is considered somewhat normal, the lower one is not. We were informed that they could close up but even if they didn't he could still lead a normal life. He had a follow-up at 10 months and no heart murmur was found. So just one more follow-up and if all is clear, his heart case will be closed. Praise God for literally healing Nathan's heart!
Nathan has had only 1 shot and even then I questioned after getting it because he cried for days after. He's been probably only about 1 month or so behind in reaching most milestones but not enough to warrant early intervention as of yet. He is very social and captures everyone's heart that he meets. I am going to have to get a gun to keep the girls away from him! He loves Lydia and where she's at, he is. And doing whatever she's doing. Even if she doesn't pay him any attention. When we were bringing Nathan home from the hospital when he was born, as we put him next to Lydia in the car, she started crying! I said "and so it begins! The sibling rivalry!" I think Nathan has been trying to get her approval ever since! MJ loves him and interacts well with him too and is a good big sister to both Lydia and Nathan. Lydia has the unique opportunity to be both little and big sister and Nathan the only brother and baby.
So here we are now having our triumphs and struggles. God has seen us through it all!
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