Special People Parenting Special Kids
I’ll start by saying that I know what a hard road this is. Finding resources for you and your child, and more importantly fighting them, will not be an easy task. There are a number of programs available, and there isn’t a one size fits all model, unfortunately. Services available vary, sometimes dramatically, depending on the state where you reside and the age of your child. The first rule in this entire journey fighting for your child is Document, Document, Document. Make sure you document each and every person you speak to and when you did. Document what you discussed, what if any follow up has been promised to you or that you’ve promised to do and when you’ve agreed to reconnect. You can keep an online document with all the information, or use a notebook, whatever way works for you. These records will come in handy because as you move forward your head will be swimming with information and having notes, names and dates to refer to will help you keep track of it all.
Your pediatrician: Your pediatrician should be the first stop. They should be able to point to you to local resources based on your child’s diagnosis. Start with what your pediatrician gives you. You will meet roadblocks all along the way, so don’t stop there.
Non-Profits: When looking for help, start with the state chapter of groups that supports your child’s specific diagnosis (i.e. Autism Support Network, Down Syndrome Society etc), or something more general, like Easter Seals. They can lead you to a local chapter and are usually an excellent source of information. Not only will you be able to get information about what you may be facing with your child’s individual disability, but they will know what resources are available locally to support you and your child. These supports can take a variety of forms, far more than I can reasonably list here.
Early Intervention Programs: Your state is responsible for furnishing early intervention services for children under the age of three. A solid state by state list of where you can contact to find these services in your state are located at the ECTACenter.
Schools: Under this category, I’m now assuming that your child is at least three years of age (or close to it). If they are under the age of three, refer to the Early Intervention Programs section above. My experience, and yours may vary, is that you should be contacting your school system in writing at least six months before your child turns three if they are going to require services through the school system. It never hurts to get the evaluation that the school system must provide. If your child has been in an early intervention program, you will want to be doing this. At the age of three, the school district will take over early intervention services. The services can/will include PT, OT, speech and other services as determined necessary by you and the school district. As the years go on, they should be assisting you with finding resources, especially for the child about to graduate or age out (transition services). My experiences with school referrals have unfortunately been somewhere between useless and non-existent. There have been singular random referrals that were beneficial, but don’t count them to supply more than the bare minimum they are required to. Dealing with the schools on IEP’S AND 504 plans is a whole different post I’ll have to write another day.
Support Groups: I will be honest. In-person support groups just never worked for me. I know lots of people who benefitted greatly from them. I don’t discount them at all and usually the local groups we talked about above can direct you to groups that are meeting in your community. Online support groups however provided me with all sorts of resources and answers I could use to help my child. Years ago the large majority of the support groups I found were on Yahoo Groups. You can search by any disability or just search for under special needs, and you’ll be amazed at the variety of groups for you to join! Of course, Facebook has a myriad of groups as well. Some groups will be very generic, others can be incredibly specific to diagnosis, location, etc.
Google: All things start with a google search, or so it seems these days. I didn’t have the luxury of this resource when my youngest was born. As she was older, I would never found many of the services I needed for my daughter without Google. My one piece of advice, don’t search a single term and assume those are the only results you’ll get. Changing the words, even though, the search should otherwise be ‘the same’ can yield very different results. Experiment. It’s free, and it won’t break the computer. You never know what will come up that will either be what you need or send you in the right direction.
The biggest things to remember:
Hopefully, this provides you with some jumping off points on your journey through the wild jungle of services out there. The following is NOT an all-inclusive list, but rather where I found was the best places for me. Feel free to leave your suggestions in the comments below.
It’s that time of year again and I’m appreciative that Susan Li of Find the Best was willing to write this article to share with all of us about finding camps for our special needs kids. Not only is it a great experience for the kids to engage with others in a fun atmosphere but it’s a great opportunity for some respite for all of us caregivers! Without further ado….
Special Needs Camps
By Susan Li
Camps meant to accommodate children with developmental and physical disabilities are beginning to emerge nationwide in response to demand from parents. Summer programs can be profound, meaningful experiences for children and any type of disability should not preclude individuals from participating. However, there are several crucial characteristics of camps that should be considered before making a decision and to ensure your child be comfortable and cared for in your absence.
If your child needs a high level of attention and supervision, it’s best to seek out programs that either have a high ratio of counselors to campers, or get directly in touch with a program ahead of time to arrange a counselor specifically for your child. Many organizations such as the YMCA, 4-H, religious and school affiliated programs have the means to assign a counselor that provides one-on-one attention. Individual counselors often assist in transitions between activities and assume responsibility of health related tasks.
Activities – Social interaction, transition, sensory-stimulation
Many outdoor camps focus on team-oriented sports and interpersonal activities, but it’s very possible to find outdoor programs that have more individual activities. Camps that feature animal interaction, such as science discovery camps or horseback riding camps, are great for fostering nurturing, relaxed outdoor environments.
Art camps are perhaps one of the best options for a tactile experience that minimizes unwanted sensory-stimulation. Particularly for children with autism, ASDs, and similar developmental disabilities, art projects provide a constructive outlet for energy and relieves many of the triggers for outbursts or tantrums. One of the most rewarding characteristics of art camps for children is the fact that they get to complete a project from start to finish and create a physical piece of work. These sorts of programs tend to offer the most flexibility in terms of accommodating physical disabilities as well.
Day vs Sleepaway
As a parent, it’s up to your discretion whether you believe a camp can adequately care for your children during a sleepaway program. The lengths of these sorts of programs vary from days to months; regardless of length of stay, maintain constant, transparent communication with counselors and management is critical. You should be able to ensure their staff can handle medical emergencies and have the same knowledge as you when it comes to the care your child requires. Moreover, residential camps tend to be more expensive, one week on average is about $574. Day camps still allows for great, enriching experiences while giving more agency and accessibility to parents.
To assist parents everywhere, FindTheBest has curated a free database of camps for special needs:
We’re having a giveaway of one Hardcover Copy of “The Boy in the Moon” Last week I reviewed this really incredible book by Ian Brown, “The Boy in the Moon”. I enjoyed it so much I thought I’d share it with one lucky reader! There are several ways to enter:
1. “Like” this giveaway post by clicking on the Facebook Like button (+1 entry)
2. “Tweet” about this giveaway (+1 entry)
3. “Like” The Special Parent on Facebook (+1 entry)
4. Tell us how you’re connected to the special needs community in the comment section below (+1 entry)
5. inviting a friend to visit The Special parent (+1 entry)
6. getting a friend to register for this giveaway (+5 entries)
When the giveaway ends (July 5th at midnight) we’ll select an entry at random to win “The Boy in the Moon” The more friends you invite to the giveaway the more entries you’ll earn to win and therefore the better your chances, so start spreading the word.
I am certain you are going to enjoy this book as much as I did and I hope you’ll be excited to get a chance to have your own copy! If this giveaway does well, I hope to do more in the future.
Please note: Use the punchtab system below to have your entries count!! The “Sharing is Caring” links will NOT register as entries. Punchtab will take you thru each option and you can SKIP any method you don’t wish to use to enter! Best of luck!
Every Sunday I hope to offer you my mini version of the “Sunday paper” with articles from the past week or two, relevant or uplifting (or both), on various issues within the disability and special needs community.
I have had two drastically different experiences in early intervention, yet with much the same outcome. Those who would seek to under or completely defund early intervention programs are being what my mom would call penny wise, pound foolish. Special needs kids do benefit from them and better yet, those who have access to early intervention have significantly better outcomes.
A documentary will air in October on HBO chronicling the lives of Monica and David over the course of their marriage and first year of life. Oh and by the way, they have Down Syndrome. Love conquers all and the very honest depiction of how this relationship impacts the entire extended family.
And as autistic children grow older, parents are increasingly asking, Who’s going to help my child after they graduate from high school and I’m gone? Two women are tackling the issues with an innovative idea, and borrowing a page from financial types to do it – Laura Slatkin and Ilene Lainer are autism’s venture capitalists.
All kids, typical as well as special needs can’t wait for summer! However, along with school vacation, warm weather and outdoor sports comes an extra dose of responsibility for parents. Unintentional injuries are the leading cause of death for children ages 1 to 14 in the U.S.
I’m That Mom
No I didn’t write this article but a mother of a few children with special needs who could be me did and I had to share it with you. I was so happy not to be the only one who screwed up on all of this (for which my ex-mother-in-law is perpetually reminding me of my shortcomings with a glancing “oh I know this is just how you are and I’ve just come to expect it”) So there! It’s not just me…are you that mom too??
12 Ways to be a Better Parent
When you are a parent of any child, let alone a child with special needs, these reminders are a handy thing to have. I could use at least one of them every single day. From a reminder to forgive, play and of course love there’s 9 other great ones for you to use in your journey as a special needs parent.
The Inclusion Debate
I read this column and honestly was kind of surprised. Maybe I haven’t discussed the inclusion issue for our special needs kids too much (but I intend to now) on this blog, or maybe the only people reading this agree that inclusion isn’t all it’s cracked up to be for everybody (Sorry, Lora) but I found that having the view from a mom who has been there, and done that was useful. I hope all of the special needs parents reading will find this insight helpful as well.
Apps 4 Children with Special Needs (A4CWSN) is a site that has recently caught my attention in an effort to work on some things with Katherine and Donovan during summer vacation. I wanted to get some apps to put on my iPad so that I could “Edutain” them. I wanted apps that would work on specific skills, without either one of them figuring out we were actually getting something out of it. I hoped that by using the iPad (which they both covet immensely) I could convince them to do something other than play angry birds and solitaire
Descriptions of Apps on the whole just S – - -!
Of course the people who are making apps want you to buy them, so they are going to do the best they can to put their apps in the best possible light in the description. Of course there are other apps that are made by people who clearly don’t have a marketing bone in their body and it shows in the descriptions they provide for their apps…TOTALLY USELESS! What’s worse is you’re sitting there wondering if you’re about to spend $2, $5, $10, $200 on an app that isn’t going to do what you thought it was going to do – and apps aren’t technically returnable (not that if there’s an error they won’t make an exception but I wouldn’t want to rely on that too often) so what’s a mom to do? And quite frankly I was beginning to wonder until I came across Apps 4 Children with Special Needs. They post VIDEOS showing exactly what the apps do as well as descriptions that actually describe something so you can get an accurate idea of what the app is going to do or not do. Apps can be found either alphabetically or by the following A4CWSN categories:
If actual reviews and videos demonstrating all the apps that can be useful to our kids isn’t enough reason for you to check out this fantastic site, you should really be jumping for joy when I tell you about their Facebook App Parties and iPad giveaways! Hurry over to the A4CWSN site by clicking on the link for Facebook App parties and read everything there, review the video and “like” them on facebook and get involved right away. It will be going on all weekend. The first part of this App Party starts tonight at 6pm EST and will go on all weekend long. With an incredible collections of companies providing apps in this there should be something for everyone. I hope you’ll join us.
As for the iPad giveaways…..truly amazing what A4CWSN is trying to do getting iPads into the hands of kids with special needs. As posted on their website:
Apps for Children with Special Needs would like to provide iPads to as many families dealing with Special Needs as we possibly can. We will be starting a campaign to raise money as well as contributing money from the site in order to do this.
All you have to do to be eligible is register with A4cwsn, follow us on Twitter and / or Facebook then send us a letter detailing why your family needs an iPad and how it will help you. There will be a list compiled and the ones we feel could benefit most will be moved to the top. The more information you give us, the more we can determine your situation, photos, videos, school reports, what ever you feel comfortable telling us. Simple and easy to do. To get started register with us on the HOME page 3/4 down left side and watch this page for details on the list.
If you can’t tell I think really highly of this site and I hope everyone takes this opportunity to check them out and see all the amazing things you can find for your kids either on iPhone or iPad. If you don’t have one of these amazing iPads – here is your opportunity to try and get one which I can tell you will be an incredible blessing on so many levels.
If you are already so blessed to have an iPad in your family take a moment and consider donating to A4CWSN’s fundraising to help pay for iPads for those not as fortunate by clicking here. Every little bit will help.
I hope you’ll follow A4CWSN as they continue to grow and assist the special needs community utilize this tool and all the apps that are coming out to help our kids grow and learn and maximize their amazing potential.
Before Medefile started with educational records, I had boxes full of records. Medical records, legal records, school records, tax records. I mourned the poor trees. But even worse than mourning the trees, I mourned any storage space I had in my home. If there was an open nook or cranny it had a storage box filled with papers. I finally broke down and bought a scanner and an external hard drive. Slowly but surely I regained storage space, but the problem was the trees were still being killed. Anytime I needed to take one of those records with me or have access to them when I didn’t have access to the external hard drive I was either out of luck or I was printing it back out again. Pain in the —! And then my world changed…
Anyone who has ever been to an IEP meeting knows you are guaranteed to come home with a at least a small mountain of papers between parental rights and the actual IEP. Anyone who has ever been to an IEP meeting also knows at the next one you are almost certainly going to need to refer back to that last IEP and maybe even the two before that. Well what was the point of scanning all of those IEP’s in when I was just going to have to print them out again?? But I have a husband who LOVES tech. Absolutely everything tech. And I think he feels it’s his personal responsibility to be an early adopter of all things techie.
Me: “What? I just got it all out of boxes??”
Hubby: No. Not boxes. Dropbox. It allows you to access all your stuff from anywhere…..even off your cellphone”
Me: “SHUT UP! Like Dropbox.com?” Probably costs a small fortune
Hubby: “Uh would I tell you about it if I was going to have to pay for it?”
Me: “SHUT UP! It’s free too??”
Hubby: “and even you can install and use it. It’s just that easy”
Me: “SHUT UP!”
Well you get the idea….it is free and so simplistic my kids could install and use it. You get 2GB of storage to start with (and you would be surprised how much you can store in 2GB) or you can add to your storage in a number of ways:
You can email your friends, Tweet your friends or Post it on facebook for all your family and friends to see. Everyone who uses your referral link, downloads the software and installs the dropbox software will get you both 250 MB of bonus space (up to a limit of 8 GB)! I love win/win scenarios. Of course you can buy additional space under one of the upgrade plans if you find you want or need significantly more space. (Plans are for either 50GB or 100GB of storage)
All of this storage will give you access to your documents, photos or videos via any computer - Windows, Mac, or Linux, as well as iPad, iPhone, Android and BlackBerry platforms.
The other thing I love is that I can make a folder within dropbox (no different than making a folder on your desktop) and share it! So I don’t have to share EVERYTHING I have stored up there but we have a box that the hubby and I share documents, photos, videos – you name it to get things between my computer and his. We also share pictures and videos and documents to the grandparents who no longer live a mile away.
I love medefile because they go out and do the gathering of medical records for me but if I wasn’t able to do that I would certainly use dropbox for this as well. I wish it had been around years ago for videos and pictures so I could have more easily shown those to doctors of behaviors Katherine was exhibiting. One time we had to actually bring a 13″ tv with built in VCR to the doctors office. I like the idea of travelling with my iPhone or iPad better. There are just an incredible number of things you can use this for…just think outside the box.
Every Sunday I hope to offer you my mini version of the “Sunday paper” with articles from the past week or two, relevant or uplifting (or both), on various issues within the disability and special needs community.
Planning for the future is still a critical issue that far too many parents think they have plenty of years for. When you have a child with a disability, this is one place where you should assume the worst and start planning today.
To take 14 advanced placement courses is an achievement by anyone’s standards. To do that, have a 5.1 GPA all while having spinal muscular atrophy (SMA) a degenerative neuromuscular disease is inspiring and teaches us no obstacle is too great with determination! I don’t think this young woman has ever let her disability stop her!
Would you want your disabled or special needs child being taught by this teacher? Reminds me of what my mother always said….if you don’t have anything nice to say, don’t say anything at all….oh and something about being thought a fool or opening your mouth and removing all doubt….
I warn you, you’ll need kleenex but this wonderful Special Olympics organization needs our help! I hope people will share this article so that the can rebuild in tribute to those fine athletes who were lost.
ASD and PTSD
I read this with an acute understanding and recognition. I felt like I could have written it myself. Mine was with a kid who was more nearly PDD-NOS (not her current diagnosis) but I still find myself having reactions now with my youngest’s ASD diagnosis. I HIGHLY recommend a read-thru
Advice for the new mom
she specifically mentions CP (cerebral palsy) but I think most moms who are now figuring out they are going to be on a different journey should consider this as well as of course “Welcome to Holland“. Both filled with great words of wisdom for the parent new to having a child with a disability.
May 1, 2011 was the fifth anniversary of Blogging Against Disablism Day. I was sorry I didn’t participate this year (I found out about it on the 3rd – my bad for being out of the loop) but I thought this was a great submission in the parenting group for this years participants. I hope you’ll take a minute to read it. I hope everyone teaches their kids about disability this way!