The Beacon

The February 2011 edition of The Beacon is now available to view.

This monthly electronic newsletter is designed to provide parents with links, resources, information and activities of particular interest to the issues of children with special health care needs.

Dental Health Guidelines for Children on the Autistic Spectrum

The Dental Health Guidelines document is a printable pdf file, you can view Dental Health Guidelines regarding children on the Autistic Spectrum. This is from the United States Department of Health and Human Resources and provides a lot of good information!


Click HERE

We're Not Alone

"We" are not alone. 

Who are "we". 

"We" is the mother that wonders how she'll ever be able to raise her child with the skills he needs in this world when his brain and body won't aide in this demand. 

"We" is the child whose sibling can go from hugging to hitting in less time then it takes to blink an eye. "We" is the same child that understands this behavior is beyond their siblings control, but at the same time can't help but feel that their sibling "never gets in trouble for doing bad things". 

"We" is the newly married into family member that really doesn't understand what is going on and feels totally inept when it comes to actively participating in the life of the family member with special needs. 

I could go on and on about who all "we" is. Instead, I want to direct you to a blog presented by the Sibling Support Network. Here, you will be able to have a small glimpse of the world through people who have siblings with special needs. 

I encourage you to take a few minutes to read the stories posted on this page. To often the siblings of a child with special needs are forgotten. Although parents are offered assistance and support, most people don't realize the struggles and sense of responsibility faced by the siblings of the same child. 

I watch each day as my two older children face a greater sense of responsibility then any child should face. I see the struggle within them. Their longing for the freedom most children their age get, while feeling guilty that they'd want anything that would take away from meeting the needs of their younger brother. I see their love and compassion for their younger brother, even as they are tired from their day of helping avoid meltdowns and uncontrollable fits. I see their working each day to provide their younger brother with a calm environment, and their despair when despite their best efforts, he still "loses it". 

Please, take a moment to go to the following website and peer through the eyes of someone that has a sibling with special needs. 

Sibling Stories

5th Birthday

Well, in 5 more minutes it will by my "baby's" 5th birthday. 

I remember when my first child (now a teenager) turned 5 years old. It was such a huge feeling. I was the mother of a 5 year old. 5 indicates so much....the starting of school, the transformation from toddler to child, the first marker of a separation from mom. 

And now, my baby is turning 5. This is the third and last time this event will happen in my life. He is the last child I will have carried within the womb I no longer have. He is, and forever will be, my "baby". 

Pookie has come a long way. He still does not have a precise diagnosis, something we hope to change this year. He still gets frustrated when people don't "hear" him (his explanation of others not understanding). He has never been able to quit moving, even in sleep. He is obsessed with ropes and often reminds me of Linus with his blanket. 

Pookie has taught me that life doesn't have to be scheduled. That sometimes a child really can not control their actions. 

I've listened to him recently beg me to tell him why he does "bad" things when he doesn't want to. He looses total control when he's in an emotionally charged, or his senses are overloaded. Although I hope that his realizing he is losing control will help us in the path to be able to find alternative behaviors, my heart breaks at his agony. 

I'm flooded with emotions thinking of all that his 5 years has brought him. I am heartbroken that for so long he's been unable to articulate any of his emotions, and now that he can it's clear he is fighting a battle within himself that I don't know how to help. 

I want each of you to stop a moment and reflect on the judgment calls you've made in your life. I want you to think of the mother you saw shopping in the grocery store while her infant screamed. How you thought she should leave and come back later when her infant was calmed. Realize that it could have been me you saw......a mother who had no choice but to shop with her screaming infant........an infant who did not stop screaming until he was 16 months old. 

Think about the child you saw lying in the floor thrashing and screaming. You said to yourself that if it were your child you would know what to do. Yet, that to could have been Pookie. A child who feels pain at light and sounds when others don't even notice. 

How about the two parents who were holding their child down and fighting to get the straps fastened in his carseat? What did you think when you saw them? That could have been us........our hearts breaking when holding him down knowing that the straps were causing him agony, yet knowing we couldn't sit in the parking lot for hours, or days, until it wasn't so bad for him. 

Maybe you saw the child who starting hitting everyone when they spoke, only to have the mother hold him close, whisper in his ear while rubbing his arms and back. Maybe you thought that she was encouraging his behavior,when in reality she was offering feedback stimulation in an effort to help his brain process the information it was stuttering on. 

I was that person before Pookie came into my life. I was the mother who had raised two very well behaved children. I was the mother who was stopped in the store by strangers to be told what "well-behaved" children I had. I was the one stopped and told how "impressed" people were with my little angels. 

I was the person who looked at the screaming child and words like "spoiled" would come into my mind. I was the person who thought the child who slapped their parents deserved swift and harsh discipline and looked down upon the parent that seemingly condoned it. I was the person who looked upon seemingly ill behaved and ill mannered children and blamed the parents. I was the person who, if the child looked "normal", then the child should behave "normal". 

I am now the parent with the child that is sometimes judged as "spoiled". I'm am now the parent that is sometimes hit, kicked or bitten and judged as not offering strict enough discipline. I am the one blamed for not being an effective parent due to my child seemingly being ill behaved. 

Yet, I am also the parent that understands that my child begins each and every single prayer he says with, "God, please help me be nice."  I am the parent that knows that my sons heart aches when he causes others pain and that he cried out to understand why he does these things without being able to control it. I am the parent that knows that seams in socks, tags in clothes, a soft wind, light, sound, or even the hum of a car engine causes my son pain in a way we can never understand. I am the parent who longs for others to understand. 

I am the parent that is pleading with you to stop and rethink the judgments you've made in your life. 

This week is "Make A Difference Week". I challenge you to change your thought patterns. The next time you see a parent shopping in the store with a screaming child, offer assistance. Can you help her load her cart with items while she holds her child? Can you help her through the checkout line or to load the groceries in her car? The next time you see a parent trying to strap a thrashing child into a carseat, again offer your assistance. Maybe you can get the child's attention for that split second it takes for the buckle to go "snap". When you see the child who strikes out at their sibling or parent and see the parents attempt to calm the child, walk up to the parent and tell him/her what a great job they are doing.

I challenge you, in honor of Pookie's 5th birthday to make a difference in the family of a child with special needs. Remember, not all special needs are visible. You can make a difference.

Upcoming 5th Birthday

Wow! Pook will be 5 years old. It's amazing when I think of how far he's come. Only through God's strength and grace could Pook have ever accomplished all that he has. 

We've had a lot going on lately and didn't get around to planning his party yet. So, tonight I asked him what he wanted on his cake. I'm not sure why I was surprised at his answer. He wanted a monkey cake, same as last year. He even wanted to same number on it, but I talked him into getting a 5. 

His gifts are quite simple. He wants the same "vroom vroom" bicycle (Hot Wheels Bike at Walmart) that he's wanted since last summer. He wants a yoyo that lights up, simply because his sister just got one. He wants more playdough and accessories (I doubt he'll ever have enough). Oddly enough, the only other thing he wants is a whistle with a pull out magnifying glass. 

I realized, once again, that having a child on the Autistic spectrum can simplify life at times. More then likely, I'll be making that monkey cake for years to come. I'm sure each present during the years events will include playdough. Overall, makes for a pretty simple birthday party. 

And, as I do with each of my children's birthdays, I'll think back to the glorious day they were born. I'll look at all their accomplishments, all their special traits and uniqueness and I'll realize that my life would be utterly void with out him. 

Thank you God for bringing Pook into my life and allowing me to learn more about life through him then I ever dreamed possible.