Being someone who works in the field of children with special needs it’s hard to have a baby without thinking about the risks each and every day. While I am past the first stage my fears continue.

With my first pregnancy I thought about the risks all the time. It’s hard not to. With my last pregnancy not only did I think about all that could happen with my new baby, but I also spent a lot of time thinking about how it would affect my older daughter Maya who is now 3 years old.

Sibling relationships are most often the longest lasting relationships in a family. They will go on after we are gone. While the arrival of a new sibling can be difficult for any child this is especially true if the new baby has special needs.

Siblings of children with special needs require very special care and often do not get it. As a result they suffer the consequences.

Much research has been done on the impact on brothers and sisters when there is a child in the family with special needs.

These children often have feelings of loss and isolation. Parents will try to protect them and rarely share information with them. Parents try to talk about other topics not relating to the disabled child.

While this is done with good intentions it leaves the brother or sister with no one to talk to about his or her feelings or concerns. It almost feels taboo to them to bring it up.

Siblings often feel fearful that they could have caused the disability. While this is irrational it is common.

They also may be resentful when the child with a disability is able to act in a way that is not acceptable behavior for them. I also see a lot of embarrassed siblings in my waiting room. While they see certain behaviors all the time they still feel ashamed when they are in public settings.

Brothers and sisters also have care-giving demands that other children their age do not, especially sisters. In fact research has shown sisters spend more time caring for their disabled sibling than on their own activities.

While they feel a sense of duty and responsibility and take on tasks willingly, ultimately it is not a healthy scenario.

These brothers and sisters also feel pressure to over achieve whether it is in school or sports. It is apparent they are looking for extra attention.

It takes years before many parents of children with special needs realize how all the issues they have been facing are affecting their other children. Some parents never realize it. It’s hard to balance the needs of any siblings. This fact only magnifies when one of them has special needs. Parents are human, we are not perfect, and we often make wrong decisions.

While I seem to dwell on this, again I bring up communication. I can’t help it. It’s just how I think. While there is such a thing as TMI (Too Much Information) children need to be kept in the loop. It’s amazing what they can understand and how much it will help them make sense of their worlds.

While many parents miss the boat, there are many programs and groups available for siblings of children with special needs. In these groups siblings get to communicate their feelings and meet others who are in similar situations as them. Just talking can do wonders.

I tried hard to prepare Maya for her new baby brother. I told her on a daily basis that when her brother is born he will not be any fun. In fact all he will do is eat, poop, cry, poop, sleep, and poop some more. These conversations seemed to have prepared her well. In fact we have both gotten several laughs since he has come home from the hospital in regards to his current routine.

So as I always say, talk, talk, talk….they will listen.

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Any time something is misunderstood, it is feared. Autism is no different. People fear it. While great strides have been made in the public’s awareness of Autism much confusion remains.

The nature of Autism doesn’t help. It is not a clear cut disorder. Autism is actually a spectrum of disorders. Autism Spectrum Disorders can range from severe to relatively mild.

In fact, it is not uncommon for there to be disagreement about whether or not a child is actually on the Autistic spectrum. Obviously that happens in the milder cases, but it does happen.

The Label of Autism Changes Everything
Some people hear the word Autism and freak out. Parents who had been hanging out and letting their children play together all of a sudden start acting weird when they find out the other child has Autism. Never mind that everything was fine until they heard the label.

While it is unfair, in some respects it is understandable. If you read my recent article about “Us and Them” you have some concept of why this happens. Humans naturally segregate the people they meet into groups of “like us” and “like them”. And being like them means you can’t be one of us.

Parents want nothing more than to protect their children. They want them to fit in. Part of fitting in is not having behaviors that are deemed quirky by the group.

Of course, children pick up quirky behaviors no matter who they are around. Let’s face it, when you get down to it, we’re all a little quirky to someone. A child with Autism just makes an easy scapegoat. Sure in some cases they have a lot of quirky behaviors. However, the fact remains, Autism is not contagious.

While the causes of Autism remain shrouded in mystery, one thing we do know is that you can’t catch it like a cold. You’re not going to end up on the spectrum just because you spend time with someone who is.

The Wrong Assumption About Autism
Children do learn a lot through modeling. However, it’s wrong to assume that just because a child has Autism your child will pick up a negative behavior. It’s also wrong to assume that a child with Autism can’t pick up an unwanted behavior from a child who isn’t on the spectrum. They can. I know my daughter has a few catch-phrases and behaviors that some parents would undoubtedly frown upon. All kids do. No one is perfect.

Part of the bias against Autism comes from a preconceived notion about what Autism actually is. Generally we hear about the most severe characteristics that can be present with Autism. And while I’m not saying that justifies a bias against those with severe Autism, I am saying that is not a fair characterization of the entire spectrum.

Some adults with Autism argue that they are disabled more by the view society holds of them than by Autism itself. To me, that is a very powerful statement. It says a lot about how we as a society are treating those with Autism. It also says a lot about the shortcomings of labels.

The Problem With Labels
Labels can bring a sense of order and understanding; however, they can also bring preconceived limits and stigmas.

While there is something to be said for being able to identify something and categorize it, there is also something to be said for not being hamstrung by what you or others think you are suppose to be.

I hope you’ll keep that in mind the next time you hear any label and especially that of Autism. While it is not very well understood, Autism is not contagious. We need to be careful not to treat those who have it as if it is. We need to keep an open mind and get past the label.

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Sometimes it’s nice to do nothing. That thought hit me at around 2:30 on a Sunday afternoon while sitting outside watching a bird. He was sitting on top of the birdhouse calling for a girlfriend. I had just emerged from my office after working all morning. Isa had only recently returned from helping Sabrina with our social skills classes.

I can’t remember the last day I didn’t work. Not that I always work all day. But I do some amount of work every day. And sometimes I work more than I sleep. I’ve been told that it’s not healthy to do so.

Funny how things change when you have kids.

Before Maya came along I had chill’n down to a rare art. I worked a lot, or at least I thought I did. But then Maya came along. Now there is a whole new sense of urgency. “Don’t put off until tomorrow what can be done today” has taken on a whole new meaning.

How did your sense of urgency change when your first child arrived?

Did you find yourself working longer or working harder so your child could have a better life? Did you start reading about how to parent? Did you suddenly become interested in vaccines, schools and toy safety? Or are you one of those parents who managed to go unfazed after childbirth?

I’ve known some of those parents. I’m sure you have too. You see this in the celebrities on TV. You know the ones. Some are still going to clubs. All are still doing the same things they’ve always done.

Bottom line is they are more concerned with themselves than what is best for their children. Sure they’d argue they’re just as concerned as everyone else. But actions speak louder than words.

Supposedly those parents aren’t as common now as they were with the early boomer parents. But it does seem to be more common than it was in the so-called Greatest Generation. Of course the downside of that generation was that dads were not as involved.

That’s a nice progression that’s happening in our society. Dad’s being more involved. Sometimes taking the lead role and often taking a balanced role.

We see a lot of that. And from our admittedly anecdotal observation, those families seem much happier.

We’re fortunate to be involved in the lives of so many parents. And their efforts never cease to amaze me. Some drive over an hour each way several times a week to come to therapy. Many drive in excess of thirty minutes each way. Some have had traumatic life-changing events in their lives and still managed to not miss a day of therapy.

I often wonder if I would have the courage to face what some of our parents face. I wonder if I faced the same challenges if I could be as dedicated. I don’t know.

Of course doing what’s right for your child is what parenting is all about. It’s not always an easy task. Decisions can be tough. By definition sacrifices are not easy. But as long as we put their needs first, we’ll all end up in the right place.

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Kids, as we all know, can be vicious. Being an outsider is not a good place to be. I’m sure we can all remember some terrible things that happened to kids we knew, or knew of growing up. Maybe we even remember bad things that happened to us. Without Isa I would have never known about children with special needs. I would have never known about their potential. When Isa and I first met I was like the majority of people. I was totally clueless.

I had no idea how many different variations and degrees of special needs there are. To be embarrassingly honest, I thought there was “mentally retarded” and that was it. It never occurred to me that there was a reason that some people talked funny. It never occurred to me that there was a reason some of the kids in school “just didn’t get it”.

As kids we were not educated by parents or other professionals. We were left to be clueless.

Thankfully I had a tendency to take up for the kids that were different. So at least I don’t have that weighing on my conscience. But I would like to think that if I knew then what I know now I would have done more.

The point is that we as parents, teachers and health professionals can make the world better for these children. How we treat them makes a huge difference. Children take their cues from us.

For example, when doing research for our social skills classes I came across a story about a child with a learning disorder who had been moved into a mainstream class. He had performed very well in a smaller class, but once he moved into the mainstream he began to go downhill fast.

It seemed that everything he did was wrong. The kids picked on him. And even though the teacher had welcomed the idea of bringing him into the class, she too was showing her frustration with him.

To make a very long story short, a specialist was brought in to make suggestions about how to help the child. Some very minor changes were made to help him behave and perform better. In turn the teacher gained a better attitude towards him and showed it. And the children who had once picked on him now helped him.

The teacher and the specialist believed that it was the teacher’s change in attitude that resulted in the change in how the children treated him.

Granted, it doesn’t always happen this way. The road to failure is, in fact, paved with good intentions. Trying to force acceptance raises resentment. And getting carried away with special treatment can backfire.

But raising awareness about these issues is a good thing.

The process isn’t always fast. But change does happen. Because of Isa, I have experienced it first hand. She has this understated, but obvious, enthusiasm for what she does. She believes in what she does, and more importantly she believes in the potential of the children.

Aside from my own perspectives, seeing the affect she has on other people’s lives is remarkable. I am proud to have witnessed it for the last eleven years of my life, and ten years of marriage.

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Being in the profession I am in and working so closely with children and their families it is often very hard to separate work and personal life. Many of the children I work with, I see several times a week and have been for quite some time. I see these children more than I see my own extended family and take working with them very personally.

Anyway, if you’ve read many of my articles you know there are some things that drive me crazy.

One thing is hearing that a pediatrician told a parent not to be concerned about their child’s delayed development because they will grow out of it. While it is true that there are common delays that many children will grow out of, the risks outweigh the benefits of waiting.

The more prudent course of action would be to refer to the appropriate specialist. This would reduce the number of children falling through the cracks.

Many children have come to my office with significant developmental issues related to autism spectrum disorders that have either been missed, or worse the parents have been told not to be concerned. This should not be happening.

Part of this problem has been caused by a lack of appropriate guidelines.

So today I am most thankful about the new guidelines issued by the American Academy of Pediatrics regarding Autism. These guidelines, initiated by a group of the nation’s top pediatricians were issued on Monday, October 29th 2007.

The guidelines say that all children should be formally screened twice by the age of 2 years, at the 18 and 24 month checkup regardless of concerns and earlier if there are any reported concerns.

There are two new clinical reports issued for pediatricians. The one containing these guidelines is called “Identification and Evaluation of Children With Autism Spectrum Disorders.” The second report is titled “Management of Children With Autism Spectrum Disorders.” These reports can be viewed at www.aap.org.

While these new tests will surely have their problems, they are a step in the right direction.

They will help identify more children who have autism spectrum disorders at an earlier age. Another hopeful side effect will be more doctors identifying other developmental issues at an earlier age and realizing the importance of getting a specialist involved.

Research has proven the effectiveness and importance of intervening early.

So whether it’s Autism or Apraxia, hopefully next year fewer children will be falling through the cracks. And hopefully fewer parents will be coming through my door against the advice of “wait and see.” If so, that is something we can all be thankful for.

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