Sunday, December 11, 2011

Family Matters

"Stay committed to your decisions, but stay flexible in your approach."
- Tony Robbins      

One of the most common questions I get asked by other parents that have a child on the spectrum is about having more kids after an autism diagnosis has been introduced into the family unit.

I was recently asked this on my Facebook page and I wanted to give the response the weight it was due, so I decided to answer the question via my blog:

So I'm trying to decide, when is the best time to have another child. My son is 2 and has ASD, and is our first. I think it'd be good to have another child for him, and I want them to feel close, but at the same time I don't want to take any of the attention he needs away from him. So I'm wondering if you might be willing to let me know what your opinion is on this subject?“ 
- Leslie D.

I don't know that there is a right answer to this question Leslie. It is something that as to be talked about between you and your husband at great length though. I can share with you my experience, and provide the disclaimer that I am not sure that what we did, nor how we did it was ideal. I am certainly not suggesting that our story be used as a blueprint, so please take what I am about to write for what it is worth... my flawed experience.

We struggled to have kids for YEARS. Once we discovered what the issue was, we were able to have a family. In our zest to have a family though, our planning was a little less than perfect. We had Bianca, and then a year and 22 days later we had Sofie. Bianca had just started to show some signs of regression at that point, though we were pretty unaware of the issue at the time. So we had Sofie not knowing that that Bianca was on the spectrum. Once Bianca was diagnosed (not officially, but we were pretty realistic so we knew Bianca had ASD years before her official diagnosis) Sofie was about 4 moths old. We then had to sweat out the next 20 months or so before we were convinced that Sofie was in the clear.

Bianca’s diagnosis has impacted Sofie directly. Bianca is a runner, so going to a park or playing outside is a challenge if it was just me or my wife with the kids. The financial drain of therapies and the scheduling means that it is tougher for us to sign Sofie up for preschool and summer programs that we would normally have our kids involved in throughout the year. As a parent you hope that your child doesn't resent his/her sibling for the limitations that may get imposed on their lives. I understand from parents of NT kids, that this is a common fear amongst them as well, but I can’t help but feel that it is still a different concern than one of a parent with an autistic child.

Since we didn't know that Bianca was going to regress into the world of autism when Sofie was born, we didn't discuss the impact another child would have on Bianca's care in terms of one on one attention. We all know that babies take lots of care, time and attention. I felt VERY guilty for quite some time about not being able to focus 100% of my attention on Bianca at a time where she surely could have used the personal interaction. Don't get me wrong, she still got a ton of attention from me and my wife. It was just an overwhelming feeling of guilt that I couldn't spend ALL of my time doing puzzles, labeling, coloring and exercises we were supposed to do to aide in therapy.

We toyed around with the idea of having a third child, but were still in the talking phase. Then Luis happened and our decision was made for us. Oops! We are currently 17 months in to a 24 month worry fest. At the time we were pregnant with Luis, the going stat was that those having one child on the spectrum were at a 3-10% greater chance of having a second child on the spectrum. That number is enough to strike fear and worry into the hearts of parents. In August of 2011, shortly after Luis turned one year old, that number was revised to 19%. Much like boys have a greater chance at being diagnosed with ASD, if the newborn is a boy the number is higher as well. Boys were found have a 26% chance of being autistic, while girls had a 9% chance. That lead to pretty much wide spread panic in my mind considering we had a boy.

I had already decided early on that I was just going to accept the fact that Luis would probably be on the spectrum. It isn’t like it would matter to me in the love department, and maybe if I prepared myself mentally from the outset the news would be easier to take. I never really talked about it openly; it was just a coping mechanism that I decided to keep in my hip pocket.

I've written before about “those moments”. They are the times when your child, who is living under a microscope as you look for the slightest hint of a red flag, does something that makes your heart stop beating. If Luis didn’t turn his head the MOMENT I called his name, I would freak. If he was playing with a car and crashed it into something and while it was rolled over took even one second to spin the wheels, I knew it was autism staring me in the face.

Having one child with autism can rob you of fully enjoying the time with your child that is normally the most fulfilling. If you decide to introduce other children into your biological family after already having one child with autism, you have to be prepared and accepting of the fact that you may very well have another child on the spectrum. It requires brutal honesty. A lot of tough questions will have to be asked. Can you handle another child on the spectrum being introduced to the family emotionally? Can you handle the financial impact that comes with therapies and transportation? Child care can be a huge financial drain on families with kids period. Is there a care plan in place that is financially sound and would address each child’s needs?

It is good to know that somebody has your back.

When discussing having a third child, we thought about everything from socialization to Bianca’s long-term care. Particularly we thought about Sofie and the responsibility that would be placed on her shoulders when the day comes that we can no longer be there for Bianca. I don’t know if that is a particularly wise or healthy thought process, but I do believe that it is 100% normal for parents of special needs children.

Some people think that the introduction of a sibling can help with the autistic child’s socialization skills. This can be true. I do believe that Sofie has done Bianca a world of good by forcing her to play and interact. What if Sofie would have been on the spectrum as well? Would she still have helped to bring Bianca out of her shell? Maybe… maybe not. You have to do some soul searching when saying that you want to have a baby FOR a sibling. Did we have Luis for us or for Bianca? We may have thought it would have been for Bianca... but in reality I think we wanted another child to help us fill out our family. We had always talked about having three kids, so I think we were really fulfilling our dream more than helping Bianca if I were looking at it from a psychological perspective.

So far, it appears that Luis is neuro-typical. He does many things that Bianca never did, even before her regression. He points with his index finger constantly, he looks for approval/correction from us when he does something, he tries to share his food with us and plays with his cars all day in the way you would expect a NT kid to play with his toys. His language is developing normally and he is yelling instructions at the dog, his sister and anything else that will listen. His eye contact is strong and despite my early concerns, I made a point to also live in the moment. I took each day as it came and have thoroughly enjoyed the quite different experience of raising a boy versus raising my girls.

So Leslie I think there is no true answer to your question. It is such an extremely personal decision and the answer changes based on what each individual can handle. I wish I could tell you that it is best to have a kid X amount of years after and Y and Z will happen… but it just isn’t that simple. My advice to you is to reflect on the decision with your husband, with your maker or belief system, and look at every scenario that could present itself and ask if you can handle each and every possibility. If there is one situation that you can think of that you think would crush you or your family and the dynamic that you currently enjoy… I would think twice. I get a lot of comments and emails from parents of multiple kids on the spectrum. Often times I find myself reading their words and thinking to myself, "How do they do it?". Then I remember how I reply when people with NT kids ask me the exact same thing... "It is my normal."

Not unlike anything in life, with great risk comes great reward. Even though we didn't plan our family the way we should have, I wouldn’t change a thing. We have three beautiful healthy kids. I don’t consider Bianca’s autism as classifying her as unhealthy. All three have taught me about life and have made me a better man, husband and father. Whatever decision you come to when deciding about expanding your family, I wish you nothing but the best. If your decision fills your life with half the smiles that our choices have then I can guarantee it is well worth the struggle.

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  1. Wonderfully honest post.

    All I want to say here is to agree that you should never have another child for any other reason than that you WANT THAT CHILD for itself. Babies never solve problems. NEVER. So the 'so he/she has a sibling' argument is fatally flawed.

    Good luck to your reader making that tough decision.

  2. Coldplay song makes me cry everytime..I fight with Alec diagnosed at age 2, is now 11. We fight society and the system everyday..wake up and don't know what the day will bring: will he meltdown how many times? will he try run into the neighbors houses to see their fans? will punch me for more food? will he go to sleep? will he sleep all night? are these meds working?