I live in southern California, AKA Earthquake Country and Fire Alley. Last year, the Station Fire (the largest wildfire the Los Angeles area has ever seen) started right behind my small town. We’re still recovering. Then, the floods tried to take what the fires didn’t. Every part of the country has its own cross to bear in terms of what Mother Nature hands us. Hurricanes? Tornadoes? Earthquakes? Floods? Fires? What does your area deal with?
If you haven’t already – make a plan for your family. Make sure you know what the emergency procedures are at both your work and your kids’ schools. Make sure that their policies are worked into your personal emergency plan. Make sure you have the contact information of someone outside of your area (and preferably the state) so that there’s a point of contact for you and your loved ones outside of the geographic region should you have an emergency. Do you have first aid supplies? Food and water? Do you know how to possibly cook, bathe, and stay warm should your electricity, water, and gas be out for an extended period of time?
Your kids have special needs. Make sure that you go over (and over and over) your emergency plan with them. They might not be able to implement it if an emergency does go down, but at least they’ll have been exposed to what your family should do. Make sure you include any medications, apparatus, batteries needed and the like into your emergency planning. If the power’s out, the pharmacy can’t fill a prescription since we’re all hooked up with computers. If the power’s out, the grocery store might not be open to get formula you put in the g-tube. If the power’s out, the oxygen machine and monitors don’t run. Do you need to obtain a generator?
Stick some stuff in your emergency supplies just for the kids’ entertainment. Perhaps ear muffs would help them in a high stress environment. Perhaps a fidget or two. Make sure to include stuff for sheer boredom such as crayons and coloring books.
Only you know what you and your individual family might need. There are TONS of preparedness sites out there, but you can start with the State of California’s emergency preparedness site. Obviously, they’re more heavy on the fire and earthquake side of things. Check and see if your city and state has their own preparedness site. The links and lists should be a great resource to get you started in thinking about what your needs might be. The old adage is sounds cliche, but it’s true. Hope for the best, prepare for the worst. Are you ready?
As you know, we try to do interviews here at the blog every Monday of parents and professionals of kids with special needs. Unfortunately, my email address was wiped out during some site maintenance. It is back online… However any and all mail in regards to the interviews is gone gone gone. SO! Unless your interview has already been posted on the site (I would have emailed you that it was set to publish), I have no record of your interest or interview responses.
If you would like to participate in the interviews here, please email me at michele@funandfunction.com. I’ll walk you through the process!
It’s back to school time here in the Wilcox household. Joseph, my oldest, just started back to school (5th grade!) and my youngest, Logan, heads back in a couple of weeks (2nd.)
In the flurry of supplies and new routines and schedules, I also have to think about changes in therapies and how it will effect my kids. I am my children’s biggest advocate. You are too. It doesn’t matter how great their therapists, doctors, and teachers are – because no one loves your kids like you do. That doesn’t mean you’re not stricken with panic about a new year and facing it all again.
So – I want to open up the floor. Comment on this post if you want to vent, or if you have a question. I’m not specially trained in anything special needs related. I’m just a mom. My training has been in the trenches, nothing more. But, I’ve seen my share of doctors, specialists, therapists of all kinds, and many an IEP – not to mention living with both my kids’ needs. If I can put your mind at ease or maybe point you towards some helpful information, I’m happy to do so. Comment away!
FF: What would you say is your biggest challenge in raising a child with special needs?
AM: My daughter has delays in every area. There is just not enough time to work on everything as well as drive her to school and appointments. No matter what I do, there’s always something else that she needs. I’ve had to learn to be satisfied that I am doing enough for her and to stop pressuring myself to be the perfect Therapy Mom.
FF: What would you say is your greatest joy in raising your kids?
AM: Watching their unique personalities emerge. I couldn’t stop laughing the first time Clara used her Dynavox (AAC device) to tell me to be quiet! Makes me wonder what else my cheeky monkey is thinking.
FF: What would you say has been the biggest help you in raising your kids?
AM: Other parents. Why reinvent the wheel? I love to learn from someone else’s mistakes and successes and often combine tips to create my own solutions to parenting dilemmas.
FF: Give us one tool you would hate to live without.
AM: The Internet.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
AM: Don’t assume that Special Needs organizations and parent to parent groups are “support groups” where people sit in a circle and feel sorry for themselves. That is so not true! Most modern organizations are about education, awareness, creating a community, and yes, support. Experience what they have to offer before deciding they have nothing to offer you and your family.
Anara, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
We have a new Featured Parent to introduce you to! Michelle is a parent to kids with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Michelle: Michelle (and David), and our kids are Graeme, 8 (turns 9 in August!), and Brennan, 7.
FF: What is the nature of their special needs?
M: Graeme has Autism and Brennan has Aspergers and is also very highly gifted.
FF: What would you say is your biggest challenge in raising a child with special needs?
M: It’s hard to choose just one, but I would say it’s finding the right programming and services, both in the school and privately. A lot of our stress during this past year has come from dealing with problems each child experienced at school. A lot of anxiety comes from knowing things are not happening as they should and either having little power to change it, or the long period of time it takes for changes to take place.
Also, with our older child, safety is a huge concern. There are not enough safety products geared toward older, capable, and intelligent children! Graeme is smart enough to manipulate any toddler safety product but does not have any sense of danger.
FF: What would you say is your greatest joy in raising your kids?
M: Sharing in their accomplishments, specifically, watching our younger boy, Brennan, (Aspergers) interact and play with other children and Graeme’s (Autism) overall progress. It brought tears to my eyes (and his teacher’s) this past school year when I dropped him off at school, and he independently said hello to his teacher, “Hi, Ms. Griggs.” Our older son, Graeme, overall is a very joyful and pleasant child, and I can’t help but smile when I see his happy face or listen to him sing. Both are so sweet and innocent.
FF: What would you say has been the biggest help to you in raising your kids?
M: Again, it’s hard to choose one “thing” or person. ABA has been the most helpful therapy for Graeme. We’ve been
Brennan
blessed to have many knowledgeable experts in the past 7.5 years both through LifePath Systems (early intervention) and our local school district who have gone gone out of their way to help our family.
FF: Give us one tool you would hate to live without.
M: Our computer. I use it every day: research; correspondence with teachers, therapists, and advocates; making educational materials for both boys; finding information when Brennan has an interest in a specific topic; educational games and websites for both kids. And for Graeme, SAFETY PRODUCTS, specifically locks and door alarms.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
M: Trust that things will get better. The beginning seems to be the hardest part as you accept the diagnosis and then start to sort through the available therapies and services. In the beginning I had a desperate urge to “fix” Graeme, but now just love him and enjoy him so much the way he is. I suggest providing as much therapy and intervention as you can reasonably afford, but believe we/you should not feel guilty for not being able to do more than you can afford or provide yourself. You’ll hear of miracle “recoveries” from other families who provided specific intense interventions. Know that there’s no guarantee that any therapy would “cure” your child. Find knowledgeable, trustworthy people for help and support. Remember to love and enjoy your child every day. Try to allow some time for just yourself and for your marriage.
Michelle, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
We want to do a short interview with you right here on the blog! Please write to michele@funandfunction.com, and she’ll walk you through the whole process.
Evesham Blue Barn Special Needs Karate Class instructor Maureen Eells, at right, takes the class through their paces. Central Record photo by David Borrelli
If you’re like me, you want your kids to be able to participate in extracurricular activities. Where do you start? I’ve got one kid who absolutely cannot do anything with impact or cardiovascular training. I’ve got another kid who has some serious stimuli issues if more than two people are involved. There are questions on what they’re doing, how they’re doing it, can the organization handle your child’s special needs, and more.
Here’s a place that’s doing it right! The South Jersey Local News just published a story on a Shotokan karate class taught by Maureen Raven-Eells.
Now a single mom, a special education teacher and a fourth degree black belt, Maureen spends her free time here at the karate class helping special needs individuals gain self-esteem, dignity and confidence.
We have a new Featured Parent to introduce you to! Toni is a parent to a child with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Toni Tenters: Toni Tenters and my son, Clayton, age 9.
FF: What is the nature of their special needs?
TT: Clayton’s primary diagnosis is Autism; however he has an array of other diagnoses including ADHD, mild to severe cognitive delays, sensory processing disorder, and an array of gastrointestinal issues.
FF: What would you say is your biggest challenge in raising a child with special needs?
TT: The biggest challenge we have faced so far is understanding all the information, tests, protocols, treatments, therapies, and terminology given during the process. Also – not receiving similar recommendations from the varying providers involved.
We started trying to get answers/assistance for Clayton when he was around the age of 3 1/2. It took nearly two years, along with an array of doctors, specialists, psychologists, and countless tests before Autism was finally discussed. We were looking for treatment options that did not include any controlled substance prescriptions, more alternative type treatments and therapies. However, due to some medical issues, we had to continue with traditional doctors as well. To date, I do not think we have had any two providers agree on recommendations for treatment/therapy. The medical community recommends medications, while the alternate providers (such as DAN doctors) recommend bio-medical interventions. And, in our case, where we are still seeing both types of providers, they tend to make comments about things we are doing that that they didn’t recommend. That part is the most difficult.
As a parent, you are already overwhelmed with emotion and want so desperately to help your child… at the very least, you would hope that two providers would have similar recommendations. We have had to do a ton of research on our own, purchased just about every book there is related to Autism, and just really taken all the information from the varying sources (including the doctors) and decided on our own which treatments/therapies to pursue with our son. We do find that we often second guess ourselves. It really is a trial and error method. Not every treatment works for every child. As parents, we know our children better than anyone else. I have learned to trust myself and to go with my gut feeling.
FF: What would you say is your greatest joy in raising your your child?
TT: The greatest joy has been watching our son progress over the years. We are very blessed that over the past five years he has come out of his own world and really taken a passion to loving life – he just has so much shared joy! He makes wonderful eye contact, is able to fully communicate, loves to give/receive affection, and has the most absolute passion for learning new things every day. He is always laughing and has a big smile on his face (except the occasional meltdowns, which yes, we still have.) And, his eyes just light up the room! He has overcome so many obstacles in his life, and he just takes them one by one and seems to be conquering them all! Don’t get me wrong, we still have a long journey ahead of us. But we have no doubt that he will continue to shine and move towards reaching his dreams.
FF: What would you say has been the biggest help to you in raising your kids?
TT: Honestly, the biggest help I received was the opportunity to attend the SonRise start-up program. At this program, we were surrounded by such an amazing staff that truly cared about us and our children. All the parents there were going through the same things as my family and we completely understood each other. We all bonded immediately! Just to have that type of support was amazing.
Over the course of the week-long program, the staff guided us through the process of learning to completely accept our children for who they were right at that moment, and how to fully love them, even if they never made any progress. I loved my son, but did not realize that I was not truly fully accepting my child as he was right then and how that was affecting me, my family, and most importantly my son. Once I worked through the process and was able to love him fully, and accept him fully, I just had a completely different attitude about everything. It all began to come together. We also learned how to run a child-centered, loving, non-judgmental intensive autism program in our homes. The methods they taught us have been priceless.
FF: Give us one tool you would hate to live without.
TT: The tools/methods I learned during my start-up training. I still use the methods today and often refer back to the array of resources they provided.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
TT: I know the diagnosis can be overwhelming, but don’t panic! The diagnosis may just open up doors to services your child needs. Listen to what the doctor is telling you, take notes, but then take time to think about everything, write down your questions, and ask them. If you don’t understand, ask again! Also, reach out to other parents who have been there. We can tell you about our journey, what worked for us, what didn’t work, etc. In the end, no one knows your child better than you do. Become your child’s best advocate. This journey is a constant learning experience for all of us. Every day is different, every child is different, and Autism looks different for every family. Most importantly, don’t give up. The diagnosis is not the end, it’s just the beginning of the journey.
Toni, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
We have a new Featured Parent to introduce you to! Cindy is a parent to kids with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Cindy Urso: My name is Cindy Urso. My daughter’s name is Ashley, she is 20 years old. My son’s name is January and he is 14.
FF: What is the nature of their special needs?
CU: Ashley has Down Syndrome and Jan has Aspergers Syndrome.
FF: What would you say is your biggest challenge in raising a child with special needs?
CU: I would have to say the biggest challenge for us has been ignorant people and bullying.
FF: What would you say is your greatest joy in raising your your kids?
CU: The greatest joy these incredible kids have brought to me is how much they have taught me about the world and what is really important!
FF: What would you say has been the biggest help to you in raising your kids?
CU: The biggest help I’ve had has been wonderful family and friends!
FF: Give us one tool you would hate to live without.
CU: One tool I absolutely couldn’t live without is the internet! It has brought me so much information, and I’ve met so many great parents because of it!
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
CU: One piece of advice to a parent just learning of a diagnosis is to be patient, don’t try to learn everything at once. Every child will do what they can, when they can. Love them just for them!
Cindy, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
Sensory Integration
We have a new Featured Parent to introduce you to! Toni is a parent to a child with special needs and graciously answered a few questions.
We have a new Featured Parent to introduce you to! Cindy is a parent to kids with special needs and graciously answered a few questions.
