Does My Child Have a Problem?

"No one would listen to me when I said thought we had a problem." How many times have I heard this? Parents of spectrum kids can face frustration after frustration. When do you trust your instincts and when do you accept what an initial screening tells you?

While I am primarily interested in following Samuel's homeschooling experiences, I am painfully aware of the challenge parents face when their gut tells them something's wrong, but the doctor (nurse, health clinic) tells them everything is fine.

Eventually, I'm hoping to get a website up and running that will provide resources for answering these questions and to share what has worked for us while homeschooling. In the meantime, here are a few suggestions.

First, trust your instincts! I'm presuming you are a normally competent parent and don't run your kids to the emergency room for every mosquito bite. You know your child better than anyone, and may be picking up on subtle cues that can't be fully quantified.

I can point to the day of Samuel's first public meltdown when he was 30 months old. Within a night or so, he woke up in the middle of the night caterwauling and thrashing about in a non-responsive state. I had been concerned for the previous six months because Samuel didn't say much -- only to be assured by other parents and medical folks that "some kids talk later than others." None of these things would pinpoint autism, but for me they added up to a strong sense that something wasn't right.

Secondly, take good notes -- any baby book you keep is a good start. For any child, if you see something that concerns you, make a note of it. Realize that even intestinal problems can be linked to autism, so its worth noting concerns outside developmental observations. It might also be valuable to ask relatives if others in the family had any autism-like symptoms. (Although it may not be known by name -- "Uncle Joe kept to himself a lot," might provide a clue.) Find somewhere to stash copies of reports and other information.

People who've had experience may be able to guide you. (Make some connections.) The reason I suggest this is that autism may be diagnosed by many different specialists: developmental pediatricians, neurologists, psychiatrists, and others. And you may get conflicting information among the specialists. My poor baby got prodded, poked, and scanned in so many ways that eventually I had to say, "Stop! We're taking a break!" (An intestinal specialist when down all kinds of dead ends not realizing that autistic kids often have bowel problems).  I was blessed to have another special needs Mom who could offer encouragement and guidance through the labyrinth.

The educational community may offer the most practical help. Preschool and early elementary teachers have seen it all, and often get a sense for "spectrum kids" long before the medical community puts the puzzle together. That is how we first received intervention for Samuel, and we continue to adore his speech teacher.

A caveat is in order here: the right to homeschool any child with special educational needs has been upheld, but hotly contested here in the US. And understand that educators will be interested in one primary outcome: how to get your child to function well in a classroom. Remember also that questions regarding why he has difficulty may only be answered through the medical community.