Tag Archives: recommended posts
PTSD and the Special Needs Parent – I agree completely
Notes From A Dragon Mom – yep, recommending this one again in case you missed it!
Bloom Burden of Complex Kids Not Whole Picture
Does Every Child Matter?
Don’t Be Shy
teacher joins the special needs ranks
The Freedom To Tell It Like It Is
Messengers… Our Duty as Parents of the Disabled
Dear Shopper Staring at My Child
An Apology from Your Child’s Former Teacher
What If You Had Autism for a Day? by Debra Japzon Gillum
5 Things Never to Say to a Special Needs Parent
5 Things You Should Know
Listen to my Words
Bullying Doesn’t Have Rules
From the Darkness
Here is an open Facebook group with lots of helpful information: Severely mentally and physically compromised children
Tax Report: Special Tax Deductions for Special Education
Accessible Travel Tips
Free apps for Special Needs Parents
Patient Loving Care Toolkit – free download
The First Steps to Improving a Child’s Drooling
Top 10 Ridiculous IEP Comments
A Fate Worse Than Death
Now I Lay Me Down To Sleep: Free portraiture photography to families suffering the loss of a baby.
Accessories, Toys and Adaptive Sports
Tubie Friends educational stuffed animals for children with feeding tubes
AblePlay – play products for children with Special Needs
Setting the Stage for Successful Performances p. 13
Crossfit is for EVERYONE – Saratoga Highschool
In NEED of Support
Cooper’s House: Cooper is my 3 year old son who suffers from cerebral palsy. We had a custom playhouse built for him to aid in his therapy. Our neighborhood association is making us get rid of it. Read my letter to my neighbors for the whole story.
Freedom Waters Foundation slide show by volunteer
Freedom Waters Foundation January 2012 News
Wildlife – May not fit with the rest but it’s important too
Keep Me Wild
Team studies ‘Police Integrity Lost”
Bully on the Bus, ebook
Well, He Did Ask…
Healing, Empowering and Thriving: “Non-Person Humans”: Elie Wiesel “We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with …
We celebrated Ronan’s 7th birthday this past weekend. We threw a joint party along with our his classmate, our friends’ and neighbors. It was a wonderful event. For Riley it was a long one as he had to spend much more time than we would have liked in the wheelchair; he did however appreciate all the energy around him.
Freedom Waters Foundation Harnesses the Power of the Sea by Stephen Brown
Like Other People
We had the same ache in our hearts (impact on marriage)
Kids of Depressed Dad’s
a day in the life: Sue Mayer – Special Needs Mom
Do You Wonder What Life Could Be…
The Right Thing to Say
Who Needs Fathers
Finding a Different Way
Sensitivity & Training
Six Practical Tips to Promote Inclusion in the Classroom
Young Children with Special Needs
school sensitivity Training video
Explaining Special Needs to Your Child: 15 Great Children’s Books
Understanding… The bigger picture
What’s Wrong with You? (The Best Conversation of Our Lives)
Don’t Welcome Me to Holland Lady
Medical & Diagnosis
Toys & Creative
Song for those with Disabilities – MP3 or words: Worship Matters
Interactive Auti Toy
Down Syndrome Exhibition – Dublin Arts Council
Special Needs Toy Guide
Photographing in the NICU/World Prematurity Day
Toy Guide with and without Disabilities
Books, Magazines, News & Periodicals
Struggle for Care: Mother Fights to Get Special Needs Son Back Home
How the Special Needs Brain Learns
Good Health News
Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs
Freedom For Ayn
Special Needs Book Review
Shut Up About Your Perfect Kid
There is so much I have planned for this blog and so much I want to say… However, there are a few problems getting in my way: primarily, time and energy.
On Monday Riley had his annual pediatric check up. He did really well. He is always so cooperative and pleasant. This year, we opted to give him a flu shot. Yes, it’s controversial. However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter. Trust me on this. I’ve done it and I don’t like putting Riley or any of the family through it if it can be helped. A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.
Our pediatrician is wonderful. One thing we always cover is the well-being of Riley’s parents – yep, that’s John and I. We ride an emotional roller coaster. This is another on-going subject that I have been avoiding. Admittedly, we are challenged by our role in life and being 9 years behind. I do not actually care to delve into this today – in fact, I am unsure when I care to get into this. For now, let’s leave it at the fact that being a Special Needs Family is not particularly easy. The conversation went on that some do handle it and some do not – it seems to be some individual parents are stronger than others. I object. I believe that it is far more than simply can you handle special needs or not…
The special needs community frequently uses the phrase “a bullet is a bullet.” Really, I do not think all bullets strike the same. When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others. Fine, object with me. This is my observation and this is how I feel. Perhaps all bullets are not created equally.
A few hours after a good report with Pediatrician, Riley came down with a flu. As usual, joke is on us. It has been a rough couple days. Riding Monday evening had to be cut short as he began to whine as he was jostled around. I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider. This was another surprise to me. The rider also had multiple disabilities, and she was considerably older and large than Riley. I had to mentally brace myself for the next half hour of hard work. To my great surprise, she sat up herself and held her reigns. I was simply there for safety. No leaning on me. No sneezing on me. No pushing arms and elbows into place for proper weight-bearing. This was unbelievably easy. Could I possibly say to her family, “Wow, she’s easy to work with!” Somehow, I doubt they would agree. Could they possibly know that I found side-walking with their child to be a breeze?
Oh dear, that paragraph got all sidetracked! Where was I going with that? Riley was sick. And was he sick. I was replaced as a side-walker to remove Riley from the ring. Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours. Then on home we went. Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors – oh, I know I’ve talked about tremors here and there in this blog – I better tag them because they’re important. When we weren’t under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process. Any wonder why some parents keep their special needs children apart from the rest of us… illness is truly horrible and this wasn’t even a particularly bad event.
Couple of posts to share today…
A post on respite for families – it’s a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title – Mother’s from Hell.
There was more to say, but my time is up. At 3:30 pm my day is done as the end of the school day has arrived. Well, I hope there aren’t too many typo’s and such, because this is a blog and I’m moving on with my day.
We are all special… I think… though I complain and want to compare bullets with you… by Stacie Wiesenbaugh