The holiday season and autism.

Crowded rooms, strong smells, and flashing lights are just a few characteristics of the holiday season that may cause stress for an autism family. Endless tips and suggestions for making the season go more smoothly can be found on the internet these days. Here are just a few……

You Can Have Happy Holidays! 

Why the holidays are difficult…

Autism and the Holidays

Holiday Tips

Outside of the practicalities of surviving family visits and the break in routines, I wish nothing more than for autism families to remember and make time for real connection. Getting the perfect family photo or watching an entire Christmas movie snuggled on the couch together may not work out as you hoped. But maybe it will.

And either way, the holidays are a wonderful time to focus on connecting with our children. Make time for them, include them in your activities, do “nothing” together, and look for special holiday opportunities to spotlight things they do enjoy.

One of my Pathways families shared how RDI has improved their holiday experience. Enjoy their story and enjoy the holidays!

“Before RDI, I would end up feeling defeated on Christmas day when my son couldn’t or wouldn’t participate in any of the activities and traditions we did as a family. Now that I know better how to guide him and how to appreciate real engagement with him, there is no shortage of special moments. I know better how to provide him with just enough framework to be comfortable and when and how I can present a challenge. Lately every Christmas has been better than the one before!”

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Questions: Answered

Below are frequently asked questions regarding RDI and MNRI.

RDI

What is the role of the RDI Consultant?

RDI Consultants work with families where a child’s developmental disabilities have disrupted or prevented the formation of the critical parent-child guiding relationship. The family consultant does not take the place of specialists and therapists. RDI Consultants educate, support, guide and team with families facing the difficulties presented by Autism.

What do parents learn and do in the program?

Parents learn to slow down and amplify the information feedback system so that both parents and children are more readily able to respond to one another, setting the stage for new discoveries. Another important objective is to develop an effective collaboration between the child’s primary caregivers. Each person is not required to be equally involved, or to progress at the same rate. However, those individuals who play a significant role in the child’s life must learn to recognize how their actions may support, or impede the development of Guiding Relationships.

How do you measure success?

We do not believe that success can be measured by checking mastered objectives off a list. Rather, it must be based on the ability of the family to construct and maintain an environment for the vulnerable child that provides lifelong opportunities for mental growth and that eventually leads to self-management and personal ownership of development.

Who participates in the program?

Participants are parents and concerned family members, along with a vulnerable “child” of any age.

What is the length of time families participate?

The program has no defined length. It is designed to accommodate parents and children with a wide range of obstacles and handicapping conditions. Therefore participation may range anywhere from one to several years.

Can I work with a Consultant if they are not local to me?

Yes! We can work with you efficiently via phone and internet.

How expensive is RDI?

RDI is less expensive than many status quo therapy options. The work goes into the parents guiding the child, so the strategies can be implemented pervasively and indefinitely.

MNRI 

What is MNRI?

MNRI stands for the Masgutova NeuroSensory Reflex Integration Program. MNRI is a series of developmental programs that begin with the proper integration of the basic neuro-sensory reflexes that are present at birth and later play important roles in all other aspects of development of the brain.

What is a reflex?

A reflex is a conscious or non-conscious response to input. Babies are born with reflexes that are tested at birth. The natural birthing process signals the brain to begin integration of the reflexes. When neural reflexes are properly integrated, it leads normal development of communication, cognition, motor, and sensory abilities.

What if reflexes are not integrated?

A delay, omission or failure to complete any of the phases of reflex development affects the formation of future skills. As a result, appropriately matured neural networks are not created. Dysfunction or compensations develop, making the true function of the reflex unreliable during periods of stress.

Nonintegrated reflexes cause the person to function on a survival level, which in turn leads to a narrowing of attention span, a lack of cause-and-effect thinking, and poor control of motor skills, behavior and spontaneous movement.

How does MNRI work?

MNRI systematically provides the brain with sensory input paired with the correct motor patterned responses. MNRI Specialists will look assess how the person’s reflexes are functioning and design a specific plan for how to prioritize and implement a program. Parents are trained on how to do the MNRI work at home with their child with support from a specialist.

What does MNRI “look” like?

MNRI work is done on the body, giving sensory input and passive motor patterning. The child does not have to actively participate, and can even be asleep during implementation of MNRI.

Is MNRI available in the Raleigh-Durham area?

Yes! Contact Amy Cameron at Pathways Treatment Center 919-9312819.

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Building Community

About 2 years ago I was asked to serve on a board of a new charter school. At the time it was just an idea. A small group of parents, a teacher, an architect, a lawyer and me. We were headed by a fearless RDI mom who wanted to see her boys in a place where they were valued, challenged and actively learning through the remainder of their high school careers. Personally, I wanted to make a difference in the lives of the families I am dedicated to serving. I felt like through Pathways I can impact relationships within families in a positive way. But at some point, a bigger community of teachers and peers comes into play in guiding the development of every person. I was not satisfied with the stories I was hearing from parents and teachers about how things were going at school. Not so many positive relationships were being forged. Teachers talked about being restrained in what and how they could guide their students. Many parents I know felt they needed to pull their child from the public schools and either pay for private school or homeschool their children. While both of these options are good for some, they are not realistic for all. And so the idea of a free, public school where students are accepted, valued and challenged really was something I wanted to support.
Honestly, I did not know what to expect, but I believe that is how life is. You don’t know what to expect along the way, but you have a goal and you work hard to make it happen. Believe me, the work was hard. And the unexpected Dragons we met on the journey were not always kind. Every person I know who was a part of this journey was working outside of their comfort zone, stretched and stressed in way I could not have imagined. I’ve never seen a group of volunteers try so hard, sacrifice so much time and give so much. The paperwork, the fundraising, the certificates of occupancy, the staffing, the endless meetings and getting by on almost nothing sometimes made it feel like an impossible dream. But in August, 2014 the doors to Dynamic Community Charter School opened. In a building scrubbed and painted by parents, grandparents, therapists and students. With a Principal who worked many months for free. Staffed by brave, and in my opinion, under-paid teachers and aides who were up for the challenge. Serviced by hopeful parents who had years of difficult experience with other schools giving us their most precious children.
Most importantly, DCCS opened its doors to the students. Those brave kids whose bodies and brains are different than average. Whose experience has been difficult. Who might need to learn in a way other schools cannot teach. They need more time to process. They learn by doing. They express themselves in unique ways. But different is not less. In fact, different only adds to our collective knowledge. It makes this world a richer place. These students have a place where their uniqueness is understood and valued. Friendships are forming. Individual needs are being respected. The beginnings of self-regulation in small groups is occurring. And the community of teachers, families, and students will get through the hard work to come. Together.
Please become a part of this community by donating or volunteering. www.dynamiccommuntycs.com

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Dear Moms

In my job I know a lot of moms. I spend the majority of my working days with mom to children who have challenges. Most of my friends are moms. Moms to little kids, moms to big kids, grand-moms. Here is what I see:
-moms who are beautiful without trying
-moms who are far more educated and knowledgeable than any doctor could ever be
-moms who spend hour and hours daily preparing organic, gluten and casein free meals for their children
-moms who went to college and have given up hopes of a career to be home with their children
-moms who do without to pay for therapy for their child
-moms who create schools with literally no money to meet the needs of their children
-moms who volunteer hours that they do not have to raise money for causes that support children
-moms who go without sleep
-moms who squeeze in jobs in between diaper changes, cooking and driving their children all over
-moms who sit in freezing cold rain to watch soccer games
-moms who stay in tough marriages so their child will have a father
-moms who blindly support their adult children, refusing to see anything but the good in them
-moms who can only see perfection in the children people call disabled
-moms who work out remortgages in order to help their child
-moms who homeschool because the school district is unable to accommodate their children’s needs
-moms who take the time to witness every small miracle their child makes
-moms who record, crate, scaffold and re-live adventures with their child
-moms who move mountains
-moms who laugh in spite of set backs
-moms who will never stop trying
-grandmoms who do it all again for grandchildren
I am humbled and honored to know every one of you. I see you and understand why you are who you are. I believe the world turns because of you.

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The big, hungry, mean bear and autism

Let’s just say you are walking through the woods. You see a big, hungry, mean bear. He doesn’t see you. What’s the first thing you do? Freeze. You stop everything with a wide eyed, deer in the head lights look on your face. Your senses are heightened. You hear more, you see more clearly, your heart pounds fast.

Let’s just say that the big, hungry, mean bear looks at you. Right at you, and he starts licking his lips. What do you do now? I bet you run. You run for your life. Fly your body through the woods as fast as you can. You run very fast, maybe faster than you imagined you could. Your body is filled with adrenalin as you run from that bear.

So now let’s just say that the big, hungry, mean bear is also quite fast. He catches up to you. His paw is swiping at your sneaker. You trip over a log. The bear is right there. What do you do now? You curl up into the fetal position. You make yourself as small as you can. All your muscles and tendons are pulling you inward. You are in protection. Let’s just say now that the big, hungry, mean bear’s wife calls him to dinner and he walks away. You have survived. You feel exhausted, dizzy, relieved, and weak in the knees. You stumble to your car and decide to go to the beach for your next adventure.

I am using this story to illustrate the purpose of reflexes. They serve you well when you need them. You pull upon those reflexes in times of crisis. They are automatic. You don’t have to think about them often. They serve to heighten your senses, move your body to escape and freeze your body for protection. Fear, fight and flight.

So what does this have to do with autism? I believe most, if not all, people who have autism have some primitive reflexes that are not serving them well. Sometimes the fear, fight and flight reflexes are in overdrive and occurring in circumstances that most of us deem safe. If your fear, fight and flight reflexes are turned on in circumstances that are new, changing, unfamiliar (dynamic), you would want to avoid those feelings. It is not a great feeling to have cortisol and adrenalin coursing through your veins all the time. It feels scary. Scary enough to want to avoid feeling them. Scary enough to make you sense things too much. Scary enough to make you want to control things. Scary enough to make you want to do things repetitively.

When I talk to people about their children with autism, rarely do they tell me that they are concerned about their child’s reflexes. I have never had a Pediatrician send a child to me to integrate Primitive Reflexes. Why? My feeling is that people are not aware of the implications of having Primitive Reflexes active.

Primitive Reflexes are present in babies at birth. They naturally integrate based on the baby’s movements. When they integrate naturally, the reflexes only reappear for protection and in the case of serious illness or injury. This is well documented. However, if they do not naturally integrate, if they are retained long past the age of typical integration, inevitably we see differences in that person’s thinking. This being the case, and often it is the case, what can parents do? My answer is A LOT. Dr. Svetlana Masgutova’s work, the founder of the MNRI Programs are top in the world for the integration of reflexes. I admire her work immensely. I am amazed almost daily with the progress parents are making implementing her techniques. I strongly encourage you to check out her work at www.masgutovamethod.com

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If you are already aware of autism, DO something about it
Today is World Autism Day. People from all over the world are supposed to “Light it Up Blue” to raise awareness of autism. The CDC just released the new statistics last week indicating a 30% increase in autism. 1 in 68 children has a diagnosis of autism. In the 25 years I have spent as a therapist specializing in autism, those numbers have risen from 1 in 2500. Clearly we have an epidemic. Clearly it is not about better diagnostics. Clearly it is not all about the genetics. We don’t seem to know what is causing this crisis. Common sense tells us we need to start being very careful with what we are shooting into the bodies of the very young, despite what the American Pediatric Association mandates.

After all this time in the field of autism, I am going to say this. I hate autism. I love MANY people who have autism. In fact, some of the best people I know have autism. But I hate what autism does to them. I hate the chaos it causes in the brain. I hate the sensory overload. I hate the missed developmental milestones that hold the secret to the child’s future. I hate the devastation autism causes families. The divorce rates, the stress, the loss of dreams and the mourning of lost potential. The financial havoc. I hate the confusion and misunderstandings that autism feeds. And the difficulty in managing one’s own self. The struggles around communication and thinking. The everyday things that the rest of us take for granted as being simple becoming huge obstacles. The gigantic toll that it takes on the schools. I hate that the quality of life for most impacted by autism is not good. Careers, relationships, and the ability to contribute easily to this world all changed by autism. The sense of isolation. The confusion. The depression. The loss.

So many years in the field of autism has shown me a lot. I know the most amazing families who have children diagnosed. I see their struggles. I see the undying dedication and incredible work they do to change what autism is doing to their children. Their dedication and efforts humble me. And their children, the beautiful miraculous children coping with autism and thriving despite. The things these people have taught me about love touches me daily. It has changed how I look at this world and taught me to be present and grateful while here. It motivates me to not stop trying. Trying to minimize the impact and hold autism has on these families.

At this point I believe awareness is one of our lesser concerns. Most people at this point are aware of autism. Almost everyone at this point knows of someone who has a diagnosis. Our children’s generation will be left with this legacy and with aiding those who will continue to cope with autism into old age. I believe the time has come for “autism awareness” day to be changed into “do something about autism” day. Here are a few things you can do about it:

TALK about autism. Make a conversation that is heard regularly in your homes, neighborhoods and in the media. Talk so loudly about autism that those who have the power to change funding do so.

VOLUNTEER to help. Do you know a family impacted by autism? Volunteer to watch their kids, pick up groceries, make a meal, or just listen. Volunteer at places working with autism (Pathways, iAspire, WCAS, Autism One, NC Autism Society….)

PARTICIPATE in fundraisers, walks, events, calls to action.

DONATE. Money is a huge obstacle for those dealing with autism. Schools doing their best to help students with autism need more than average funding. My favorite is the Dynamic Community Charter School (www.Dynamiccommunitycs.com)

PRAY, meditate, send good vibes for families coping with autism.

If you are already aware of autism, please make today about doing something about it.

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Core Deficit

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pathways film

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