When Your Baby Is Born With Medical Issues
The day you find out you’re pregnant, or have been approved for adoption, is a day of joy, dreams and hopes. But then, of course, you discover that the long awaited “perfect” child is not actually perfect. Does the joy dissipate, or can you find it again?
I believe you can. Perhaps through prenatal screening during pregnancy, you learn your child has Down Syndrome or spina bifida; or, after the child is born, that they have a rare blood disorder or are bipolar or autistic. Regardless, it is a loss and it is heartrending to discover that all of your hopes and dreams for this child may not be realized. But there can be joy. I know it and live it, every day. Finding joy in this situation is a choice.
We chose to adopt our son, knowing that he was autistic. We chose to adopt our daughter, not knowing she was bipolar. You never really know what you are going to get with any kiddo, whether they are your natural child or an adoptive child. I believe every child is a gift that can be cherished. Some of us just have to work harder to cherish the gifts we are given.
One of my favorite memories of my 10-year-old son happened after he’d gotten in trouble and was crying his apology to me, stating: “I guess I can’t be autistic anymore.” “Why?” I asked. “I got in trouble because I was autistic,” he answered. I realized he was crying, not because he was in trouble, but because he thought somehow his punishment would take away his autism. He liked who he was, regardless of his convoluted communication style, sensory issues, poor handwriting and lack of social skills. Despite his intelligence and other natural gifts, my older “perfect” son will probably never have the same positive self-confidence as his little brother, who will never measure up to the world’s standards of “normalcy.”
He’s not bothered by his autism and he’s proud of his accomplishments. And so am I.
I love his autism, because that’s who he is. I love his oddities, since it gives me a fresh look at the world. I love his lack of social skills, because it allows me to perceive people and situations through a different lens. I love his sensory issues, since it provides me with an appreciation of my own senses. I love listening to his attempts to organize his thoughts because he often brings great humor to his thought processing.
There are services and aides for parents with more difficult children. There are federal and state laws that ensure your child’s developmental milestones are being met through Early Intervention Projects. Your pediatrician can give you the contact numbers if you suspect your child is not meeting appropriate
developmental goals. There are programs like Eagle Mount that let our children know they are normal and can do what other children do, perhaps in a different way or when taught differently. There are parent support groups that allow parents to vent and share their frustrations and joys. There is no doubt that parenting a child with a disability is hard, exhausting, frustrating and annoying, but it can also be joyful.
I went to Russia wanting two more “perfect” children. I did not get perfect children, I got children with challenges. Their challenges have made me a better mother, wife, daughter, sister, friend and therapist. Their challenges allow me to grow with them in patience, perseverance and love. I love the individuals that they are becoming and I have new dreams and hopes for them. I choose joy.
Resources for Parents: NIHCY.org: This is a great online resource that gives an overview of services available for children (birth to age 22) with developmental delays and/or disabilities and provides links connecting you to state and federal laws. Eagle Mount is a local organization committed to providing quality therapeutic recreational opportunities for people with disabilities and young people with cancer, and to providing support for families of participants so that “they shall mount up with wings as eagles.” Bozeman: 406-586-1781 or Helena : 406-442-6103, 3400 Centennial Dr., Helena, MT 59601
Septa (Special Education Parent, Teacher Association): Parent support organization for Bozeman, Belgrade, Manhattan and Livingston. Contact Alyson Ball at kball977septa@ gmail.com. Special Education Directors at your local school district: Bozeman School District director, Chad Berg at chad.berg@bsd7.org, is a great resource for parents and families in the area. In Helena, contact Lisa Lowney, llowney@helena.k12. mt.us.
The day you find out you’re pregnant, or have been approved for adoption, is a day of joy, dreams and hopes. But then, of course, you discover that the long awaited “perfect” child is not actually perfect. Does the joy dissipate, or can you find it again?
I believe you can. Perhaps through prenatal screening during pregnancy, you learn your child has Down Syndrome or spina bifida; or, after the child is born, that they have a rare blood disorder or are bipolar or autistic. Regardless, it is a loss and it is heartrending to discover that all of your hopes and dreams for this child may not be realized. But there can be joy. I know it and live it, every day. Finding joy in this situation is a choice.
We chose to adopt our son, knowing that he was autistic. We chose to adopt our daughter, not knowing she was bipolar. You never really know what you are going to get with any kiddo, whether they are your natural child or an adoptive child. I believe every child is a gift that can be cherished. Some of us just have to work harder to cherish the gifts we are given.
One of my favorite memories of my 10-year-old son happened after he’d gotten in trouble and was crying his apology to me, stating: “I guess I can’t be autistic anymore.” “Why?” I asked. “I got in trouble because I was autistic,” he answered. I realized he was crying, not because he was in trouble, but because he thought somehow his punishment would take away his autism. He liked who he was, regardless of his convoluted communication style, sensory issues, poor handwriting and lack of social skills. Despite his intelligence and other natural gifts, my older “perfect” son will probably never have the same positive self-confidence as his little brother, who will never measure up to the world’s standards of “normalcy.”
He’s not bothered by his autism and he’s proud of his accomplishments. And so am I.
I love his autism, because that’s who he is. I love his oddities, since it gives me a fresh look at the world. I love his lack of social skills, because it allows me to perceive people and situations through a different lens. I love his sensory issues, since it provides me with an appreciation of my own senses. I love listening to his attempts to organize his thoughts because he often brings great humor to his thought processing.
There are services and aides for parents with more difficult children. There are federal and state laws that ensure your child’s developmental milestones are being met through Early Intervention Projects. Your pediatrician can give you the contact numbers if you suspect your child is not meeting appropriate
developmental goals. There are programs like Eagle Mount that let our children know they are normal and can do what other children do, perhaps in a different way or when taught differently. There are parent support groups that allow parents to vent and share their frustrations and joys. There is no doubt that parenting a child with a disability is hard, exhausting, frustrating and annoying, but it can also be joyful.
I went to Russia wanting two more “perfect” children. I did not get perfect children, I got children with challenges. Their challenges have made me a better mother, wife, daughter, sister, friend and therapist. Their challenges allow me to grow with them in patience, perseverance and love. I love the individuals that they are becoming and I have new dreams and hopes for them. I choose joy.
Resources for Parents: NIHCY.org: This is a great online resource that gives an overview of services available for children (birth to age 22) with developmental delays and/or disabilities and provides links connecting you to state and federal laws. Eagle Mount is a local organization committed to providing quality therapeutic recreational opportunities for people with disabilities and young people with cancer, and to providing support for families of participants so that “they shall mount up with wings as eagles.” Bozeman: 406-586-1781 or Helena : 406-442-6103, 3400 Centennial Dr., Helena, MT 59601
Septa (Special Education Parent, Teacher Association): Parent support organization for Bozeman, Belgrade, Manhattan and Livingston. Contact Alyson Ball at kball977septa@ gmail.com. Special Education Directors at your local school district: Bozeman School District director, Chad Berg at chad.berg@bsd7.org, is a great resource for parents and families in the area. In Helena, contact Lisa Lowney, llowney@helena.k12. mt.us.
Summer Time Bickering Can Lead to Bonding
I love summertime: camping, hiking and swimming. But my favorite part of summer is having more alone time with my kids. They are home from school and all mine. Unfortunately, within the first few weeks (or sometimes even first few days) I am driven to making the pronouncement, “I AM DONE.” There’s no bonding, just a lot of bickering. Why?
Each member of a family has their own specific idea of how the family should operate. When our ideas conflict, a fight or bickering ensues. And being in close proximity to each other for extended periods of time without the distraction of school can compound the problem. But bickering can actually be good. It lets us know as parents that ideas are clashing and it gives the family an opportunity to address issues that have been avoided during the
school year.
Be proactive
The easiest way to head off, or at least reduce, summertime bickering is to have a family meeting before summer break begins. Be proactive and find out what your children’s visions of summertime fun really look like. Be open to what the child wants to communicate. As a parent and leader of the family, it is sometimes hard to give children power and choices regarding the operation and plans of the family. But they’re family too and their ideas have merit. Their ability to express their ideas is empowering and allows them to develop positive self-esteem. Our family meeting consisted of making a list of what our children wanted to do (have sleepovers every day) and didn't want to do (household chores) over the summer.
Boundaries for arguments and bickering
The bottom line is that we are the parents. We want a long-term relationship with our children and our respect for their ideas is critical to their self-esteem. So, while my kids’ idea of no chores was unacceptable, the idea of many sleepovers was acceptable. We didn't dictate how and when the chores had to be done, allowing the children more freedom since it was summer. Chores were, however, our bargaining chip in negotiating time for each child to have an opportunity to pursue one of their ideas (a sleepover).
Recurrent conflicts
This all sounds fine, but the reality is that – despite our pre-planning – unplanned things do occur. Our job as parents is to stop and have another family meeting to discuss how the intrusion has altered our plans. Some of my children accept change and others have a very difficult time with it, even if it is a good change. Discussing change as thoroughly as possible is necessary for children to feel they have been able to discuss their feelings. In our family, bickering occurs among the kids most often when they feel that their parents or siblings are ignoring their ideas or opinions. This is why we need to stop and renegotiate the real issue. This involves talking and being open to what they want to say.
Alliances
When there are more than two people in a family, two will often form an alliance against the other. Hopefully in a two-parent family, the alliance between mom and dad can’t be broken, especially in front of the children. The problem occurs when two of the children, for example, unite against another familymember. It’s natural to be unaware of alliances within your family, but to get a better sense of your family’s dynamics, ask yourself questions like: “What family member do I tend to agree (or disagree) with most often? When the children are fighting, whose side do I generally take?” These alliances are normal and should change from situation to situation and not disrupt the functioning of the family. However, if they become long lasting or rigid, they can cause damage. This is an interesting conversation to have with your children. You will be amazed at their responses and it will give you more insight into the family. We were shocked to realize that our boys have an alliance against their yelling sister; that’s something we need to be more aware of.
Children learn by example
Never forget that children learn by example. Do the parent figures in the home resolve disagreements with successful reconciliation? Do parent and child disagreements end in reconciliation? You are teaching your child how to handle disagreements in a manner that they will imitate their entire life. My youngest son runs away whenever my husband and I disagree. He says we’re fighting. It is essential that we explain to him we’re just having a disagreement and be sure he sees that it is resolved in a peaceful manner. The problem is you never know when your children are listening, so assume they always are…because they are.
Summertime bonding is wonderful. Summertime bickering is a chance for family growth, which in reality leads to healthier bonding. So enjoy the bickering that leads to lasting bonding.
Peace and happy summer.
Each member of a family has their own specific idea of how the family should operate. When our ideas conflict, a fight or bickering ensues. And being in close proximity to each other for extended periods of time without the distraction of school can compound the problem. But bickering can actually be good. It lets us know as parents that ideas are clashing and it gives the family an opportunity to address issues that have been avoided during the
school year.
Be proactive
The easiest way to head off, or at least reduce, summertime bickering is to have a family meeting before summer break begins. Be proactive and find out what your children’s visions of summertime fun really look like. Be open to what the child wants to communicate. As a parent and leader of the family, it is sometimes hard to give children power and choices regarding the operation and plans of the family. But they’re family too and their ideas have merit. Their ability to express their ideas is empowering and allows them to develop positive self-esteem. Our family meeting consisted of making a list of what our children wanted to do (have sleepovers every day) and didn't want to do (household chores) over the summer.
Boundaries for arguments and bickering
The bottom line is that we are the parents. We want a long-term relationship with our children and our respect for their ideas is critical to their self-esteem. So, while my kids’ idea of no chores was unacceptable, the idea of many sleepovers was acceptable. We didn't dictate how and when the chores had to be done, allowing the children more freedom since it was summer. Chores were, however, our bargaining chip in negotiating time for each child to have an opportunity to pursue one of their ideas (a sleepover).
Recurrent conflicts
This all sounds fine, but the reality is that – despite our pre-planning – unplanned things do occur. Our job as parents is to stop and have another family meeting to discuss how the intrusion has altered our plans. Some of my children accept change and others have a very difficult time with it, even if it is a good change. Discussing change as thoroughly as possible is necessary for children to feel they have been able to discuss their feelings. In our family, bickering occurs among the kids most often when they feel that their parents or siblings are ignoring their ideas or opinions. This is why we need to stop and renegotiate the real issue. This involves talking and being open to what they want to say.
Alliances
When there are more than two people in a family, two will often form an alliance against the other. Hopefully in a two-parent family, the alliance between mom and dad can’t be broken, especially in front of the children. The problem occurs when two of the children, for example, unite against another familymember. It’s natural to be unaware of alliances within your family, but to get a better sense of your family’s dynamics, ask yourself questions like: “What family member do I tend to agree (or disagree) with most often? When the children are fighting, whose side do I generally take?” These alliances are normal and should change from situation to situation and not disrupt the functioning of the family. However, if they become long lasting or rigid, they can cause damage. This is an interesting conversation to have with your children. You will be amazed at their responses and it will give you more insight into the family. We were shocked to realize that our boys have an alliance against their yelling sister; that’s something we need to be more aware of.
Children learn by example
Never forget that children learn by example. Do the parent figures in the home resolve disagreements with successful reconciliation? Do parent and child disagreements end in reconciliation? You are teaching your child how to handle disagreements in a manner that they will imitate their entire life. My youngest son runs away whenever my husband and I disagree. He says we’re fighting. It is essential that we explain to him we’re just having a disagreement and be sure he sees that it is resolved in a peaceful manner. The problem is you never know when your children are listening, so assume they always are…because they are.
Summertime bonding is wonderful. Summertime bickering is a chance for family growth, which in reality leads to healthier bonding. So enjoy the bickering that leads to lasting bonding.
Peace and happy summer.