Religion and Kids With Disabilities

O.k. - I think I'll be the one to talk about maybe a taboo topic? - Religion & Kids with Disabilities, because that is where my heart is right now. As I sit here and write this note to you I am sitting in a coffeehouse with my husband, anxiety riddled, because I signed my two boys up for Sunday school after church. My typical child was not too hard to convince, they had food. My Hudson, who is not so great with new experiences, and certainly not wooed by food, was entirely unconvinced that this would be a positive experience.
Now, we decided to return to the Catholic church after many years away. My husband and I are both Catholic. We made this decision with two principles in mind, education and community. We figured we had two options. One, place our child in the public system whereby, he could end up anywhere, perhaps not with my 5 year old and in a class up 30+ students; or option two, place him in a religious environment that preaches acceptance, has a small class of 20 and both children can be involved in the same community.
So, we had both of the boys baptized two weeks ago. This entailed weeks of practicing with Hudson where we baptized his Woody doll under the kitchen sink about 100 times. Practicing helped a ton and I am proud to say that overall he did great, with that part. The thing we did not anticipate was the Father rubbing the sign of the cross on head. To this he screamed at the Priest in the middle of Sunday mass to not touch him and firmly declared, "no touching!" Everyone laughed and thought this was sort of endearing, as my husband and I exchanged terrified looks about whether this was the beginning of a volcanic tantrum or not. Thankfully, not.
This leads me to now, where I sit here terrified that he may be having a meltdown over there and be perhaps hurting other children, supervised by people that may not understand his needs. None the less, I am prompted to have faith. Faith that perhaps he will enjoy it and even if he does not this time, know that it takes routine for Hudson to begin understand and even enjoy something.
P.S. Turns out he did have a meltdown, but there was a male figure in the room that calmed him down and they became buddies. His teacher did not mince words - she said, "he had a hard time," but her husband was able to connect with him. He was smiling when I picked him up and frankly that is all that matters.
Do you have trouble in church? Are you also thinking about placing your child in the private school system? Let me know. I think it is a great discussion to have. Thanks for listening. - Jen

Easy to Love But Hard to Raise BOOK REVIEW

Easy to Love But Hard to Raise

Edited by: Kay Marner & Adrienne Ehlert Bashista

When my advance copy review arrived last weekend I was so excited! I could not wait to start reading the book that Kay & Adrienne had put together. As I am sure many of you know finding time to read can be nearly impossible, but for whatever reason things worked out during the week. I had two free mornings while Emma was in school. Little or no errands to run and didn’t want to waste hours of time driving the 40 minutes to and from our house- not mention the gas! I parked my behind at a local coffee shop, coffee and book in hand and started reading.

The stories shared in this book are all wonderfully and brutally honest. I was touched in many ways while reading these stories. Some simply touched my heart. Parents like me that willingly sacrifice to make sure we are giving our children everything & anything, including our entire self. Others touched a deep raw nerve, the parents who wrote in black and white the struggles they have faced as parents & as a family. It was cathartic for me to read parents admit that they question themselves, question God and wonder where the hell did the fantasy of becoming a parent go? Why is this so hard? And the worst, what am I doing wrong? This book literally helped me work through my own guilt through theirs.

The expert advice throughout this book offered wonderful insight and ideas from a professional level. I have already highlighted sections of pages, dog eared pages and scribble notes along the pages of questions to ask my daughters professionals. The combination of personal and professional is like no other book I have read. It is a mix of hope, sorrow, comradery and help all in one place. There are several stories I will read again and I would recommend this book to any one who is living the battlefield that is special needs parenting.

On a personal note I want to thank Kay and Adrienne for giving myself and Jennifer the idea, permission and support to use the name of the book for our local Utah support group.

-Lindsay

Wednesday is the day!!

Tomorrow is one of our much anticipated SPD meetings! We are SO excited to have Katie Mangus (an OT through Easter Seals) coming to talk to the group!! We are also excited about our new, cozy and safe meeting location!
The Sharing Place has graciously offered their space for us to use!
1695 East 3300 South SLC @ 7pm
We hope to see a lot of you there!!
Next week is our Davis County SPD meeting. Katie will also be attending this one!
Davis Behavioral Health
934 So Main #6 Layton @ 7pm
We are trying to get a idea of numbers for both meetings If you could email us or leave a comment on this post to let us to know if you are planning on attending either that would be awesome!!
Thanks a bunch!!
Lindsay

Oooh also, stay tuned on Friday. I will be posting a book review for Easy to Love but Hard to Raise. It is AMAZING!
Saturday we will have a booth @ the Sahara Cares Carnival! If you are there stop by and say hello!

Well - I have finally arrived!

Gone are the days of the quick Facebook post where in 25 words or less you knew what was happening in my world, now we have been asked to Blog! I am sure in the long run this will be good and probably a bit therapeutic, but finding the time to detail out the struggles and joys of the day on the screen has been a daunting task. But, enough. Her I am world! I am thinking it best to start with an introduction.

I think the pervasive theme through out this past year was "fear." Fear has been the catalyst for all the therapy, speech, occupational, PLAY and it was also a huge motivator in starting this group with Lindsay. Really, what is boils down to is that no one, and I mean no one, for surely knows exactly what Hudson's life will look like in the future. They can guess, but no one knows for sure. Prognosis is good for a child diagnosed just before is 3 rd birthday. But not knowing, that in it's self is scary. So, I started on this quest. I think Jennie Lindhorst of the documentary "Autistic-Like" put it so well, "I felt like every interaction I had with him was in an attempt to save his life" - and I still feel that way. After diagnosis, I was in shock. I read every thing that I could get my hands on (and could read in the 5 minutes before I fell asleep). I doubted, "is he Autistic?"and I questioned, mostly because as a mother, you blame yourself. This was, "all my fault," I thought. Maybe, I harmed him by not taking my prenatal vitamins?? But, not for long. You can only stay in that place for a short while because you are loosing precious moments to make a difference, and the pity party goes nowhere, so I sprang into action.

I was already talking to Lindsay in those exhausted moments in the school lobby, before and after his therapy preschool class. We both thought a support group would really help us not only network and find special activities for our kids and their siblings, but just get information that was credible! There is so much information out there about autism and add/adhd, sensory processing ( and we have already established my reading time frame). Then in Feb/Mar I was asked to attend a local autism conference where my occupational therapist was presenting. This was eye-opening! During that day, I attended an hour presentation called "the ABC's of Autism." The classroom was filled with people just like me - starved for the right kind of information and dealing with intense emotion about being newly diagnosed, or not even diagnosed yet. I went up to the presenter and told her what I was looking for - a room full of people who I could talk to, who I could laugh with, cry with, and share experience, strength and hope. Let, me back track a bit and tell you I am a child of two alcoholic parents, both of who got sober with the support of Alcoholics Anonymous. I am used to this model - whereby, you are only as sick as your secrets, and the hope comes from hearing other peoples stories. Lindsay and I both were dying to hear some hope. The woman running the "ABC's" said, "you know, that is what I wanted, when my son was diagnosed. They don't have anything like that here. Why don't you start one?" I thought, "your kidding me right? This is the astounding wisdom I am getting from this woman? I can't start one! - who am I? I certainly am no expert!" As the months past, Lindsay and I still wanted that phantom meeting out there, that never appeared. The more we did talk with people the more we realized we just needed to do it. With these kids, no one is an expert! They change constantly! I am forever being shocked at the amazing things Hudson can do that I never thought he would conquer and surprised by the simple things he still struggles with. I do hope to see you in our meetings here in Salt Lake or to hear from you out there that are dying for some support and hope like I am. Love, Jen Levy
(Whew! I did it. My first blog.)

Child Care

Hey everyone, hope everyone is having a fantastic Saturday morning! We just wanted to keep you posted on the status of child care. Our goal is to be able to provide child care to the children while the parents come to our group. We understand that finding a babysitter for our special kids can be difficult and/or expensive, and it is a top priority to work on figuring something out and making it easier for parents to attend.
We are currently looking into grant options and/or volunteers. We have our feelers out and will keep you all posted on how it is going.
As always, if you have questions or ideas please feel free to send us an email or give us a call!
-Lindsay

Well - I have finally arrived!

Gone are the days of the quick Facebook post where in 25 words or less you knew what was happening in my world, now we have been asked to Blog! I am sure in the long run this will be good and probably a bit therapeutic, but finding the time to detail out the struggles and joys of the day on the screen has been a daunting task. But, enough. Her I am world! I am thinking it best to start with an introduction.

I think the pervasive theme through out this past year was "fear." Fear has been the catalyst for all the therapy, speech, occupational, PLAY and it was also a huge motivator in starting this group with Lindsay. Really, what is boils down to is that no one, and I mean no one, for surely knows exactly what Hudson's life will look like in the future. They can guess, but no one knows for sure. Prognosis is good for a child diagnosed just before is 3 rd birthday. But not knowing, that in it's self is scary. So, I started on this quest. I think Jennie Lindhorst of the documentary "Autistic-Like" put it so well, "I felt like every interaction I had with him was in an attempt to save his life" - and I still feel that way. After diagnosis, I was in shock. I read every thing that I could get my hands on (and could read in the 5 minutes before I fell asleep). I doubted, "is he Autistic?"and I questioned, mostly because as a mother, you blame yourself. This was, "all my fault," I thought. Maybe, I harmed him by not taking my prenatal vitamins?? But, not for long. You can only stay in that place for a short while because you are loosing precious moments to make a difference, and the pity party goes nowhere, so I sprang into action.

I was already talking to Lindsay in those exhausted moments in the school lobby, before and after his therapy preschool class. We both thought a support group would really help us not only network and find special activities for our kids and their siblings, but just get information that was credible! There is so much information out there about autism and add/adhd, sensory processing ( and we have already established my reading time frame). Then in Feb/Mar I was asked to attend a local autism conference where my occupational therapist was presenting. This was eye-opening! During that day, I attended an hour presentation called "the ABC's of Autism." The classroom was filled with people just like me - starved for the right kind of information and dealing with intense emotion about being newly diagnosed, or not even diagnosed yet. I went up to the presenter and told her what I was looking for - a room full of people who I could talk to, who I could laugh with, cry with, and share experience, strength and hope. Let, me back track a bit and tell you I am a child of two alcoholic parents, both of who got sober with the support of Alcoholics Anonymous. I am used to this model - whereby, you are only as sick as your secrets, and the hope comes from hearing other peoples stories. Lindsay and I both were dying to hear some hope. The woman running the "ABC's" said, "you know, that is what I wanted, when my son was diagnosed. They don't have anything like that here. Why don't you start one?" I thought, "your kidding me right? This is the astounding wisdom I am getting from this woman? I can't start one! - who am I? I certainly am no expert!" As the months past, Lindsay and I still wanted that phantom meeting out there, that never appeared. The more we did talk with people the more we realized we just needed to do it. With these kids, no one is an expert! They change constantly! I am forever being shocked at the amazing things Hudson can do that I never thought he would conquer and surprised by the simple things he still struggles with. I do hope to see you in our meetings here in Salt Lake or to hear from you out there that are dying for some support and hope like I am. Love, Jen Levy
(Whew! I did it. My first blog.)

September is going to be exciting!

We are working hard to get the word out!! We hope to see more of you all and for our group to grow, we are going to try & be much more diligent on posting on the blog and on our facebook page. As I am sure all of you know life can get CRAZY and sometimes a week goes by in a blink of an eye. If you don't see anything for a bit and you want information on an upcoming group don't hesitate to shoot one or both of us an email!

I am SUPER excited about September's meeting. Our focus is going to be Sensory Processing Disorder. This is something I am passionate about as it is one of my daughters biggest struggles. We are excited that Katie Mangus an Occupational Therapist from Easter Seals has graciously agreed to come to BOTH meetings. We will also be bringing some information that we find helpful to share! We will also have our first meeting in SLC at The Sharing Place. It is such a homey comfortable and safe place, we are excited!
October's focus will be eating difficulties. I know both myself and Jen have struggled in very different ways with our children's eating. We are going to keep this a caregiver panel and hopefully we can share things that have worked for us and I am sure many of you will bring some great ideas as well. I have already gotten some wonderful ideas and insight!

November is focusing on the effect caring for a special needs child can have on the family. Some possibilities are in the works for this meeting. We will keep you posted as things get closer.

I am really SO excited about this group and so happy that Jen and I decided to "just start it". I look forward to a GREAT fall and hope I get to meet more of you.

As always please feel free to contact me by phone or email with questions, ideas or if you just need a little support that day.
-Lindsay
lindsaybartholomew26@gmail.com