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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Lick for input

We have had the pleasure of attending many different workshops, seminars and conferences over the years that have dealt with everything from legal, behavior, feeding, respite care, speech and a host of other issues that come with the territory of dealing with the special needs. One session at a conference that struck a nerve with me was one that had to do with sensory input and sensory needs. It opened up a whole new world to me about further understanding some of Matthew’s behaviors and how they may seem odd to other people.

The speaker was David Brown who is a specialist who works with special needs children in California. He is a gentle person who has a unique gift of communicating and connecting with kids, especially those who have disabilities. His presentation was about listening to the “behaviors” that our kids exhibit, whether they have learning disabilities or not. He commented that while he was presenting, he noticed that most of the people in the room were showing signs of “self-stimulation” or self-stim. That made everyone squirm a little wondering what they may have done and caused some to look around to see who he may have been talking about. He went on to inform that one person, if not several were twirling their pen in their hand, others were tapping fingers on the tables, others were bouncing their knees up and down, some doodling, still others were yawning. His point was that our bodies have a constant need for stimulation, some are just more socially acceptable than others. Families and professionals who work with those with special needs often see a different form of self-stim in the form of biting of the hands, laughing at inappropriate times, making loud noises, chewing or mouthing things. The list is lengthy.

Matthew, although non-verbal, is very vocal in making all kinds of sounds. Those who are close to Matthew can distinguish happy, excited, scared and not happy sounds. He also has a habit of biting on one of his knuckles and slapping his forehead. He may do this when he is upset or when he is happy and excited. For people who do not see this as the “norm” it can be quite upsetting and makes for many stares from strangers.

My point in relating all of this is that I have learned to be more tolerant to the “stimuli” habits of other people. I empathize with parents who have a child who is not behaving in a store or has a baby that is crying out. I have learned not to stare at those who are differently abled than I am and realize that we all have the same needs of acceptance.

We are grateful to the many people around us who, for the most part, understand the unique challenges that we face especially when it comes to socializing. Most homes are not “Matt friendly” in regards to breakable things, stairs, lamps, etc. We have several friends who understand that it is just easier for us to entertain at our home where Matthew is safe and familiar with the surroundings. They are also very tolerant of what may happen while they are at our home. As the picture shows, Matthew was investigating the unique features and texture of a shaved head. And, as part of the information gathering process, at some point the object must have it’s information gleaned by being licked…Not the most socially acceptable action for sure, but a great example of sensory input.

We have learned to accept that our family draws the stares of many curious people. Some the of the stares are laced with a smile, some are glaring and seem to say “can’t you just quiet that kid?” We just take it in stride and wish that sometimes we could bite our knuckles and slap too.

  • Jim Carlson

    Thanks for sharing the “chapters” of Matthews life and your families experiences. It is amazing how much we learn when we start walking in the shoes of others due to our circumstances in life. All part of the “growth” process…will we ever “grow” up? …”go up” yes, not sure about the other!

    Blessings to you and your family, Kev!!!!!!!!

  • Marge Jones

    You have articulated SO well life with a special needs child. I can so relate to many of the moments you mentioned! Thanks! Many smiles!

  • Linda Novak

    Hey!
    I recognize that shaved head!
    Another great post, Kevin.