Romantic Relationship Resources

by Band Back Together | Aug 5, 2018

What Is A Romantic Relationship?

For most people, romantic relationships can be the most important part of their lives. Romantic relationships are often thought of as friendships with the addition of passion, intimacy and commitment.

To love and to be loved just as you are; to form a partnership and build a lifetime together; to look at your partner and see the future, these are some of the most rewarding parts of life.

But what goes into these romantic relationships? Why do some romantic relationships fail while others thrive? What makes up a healthy relationship? Is what’s healthy for you healthy for another?

Let’s explore romantic relationships a bit.

The Spectrum of Love and Love Relationships:

Imagine romantic relationships on a spectrum – on the one end, you have dislike, and the other, love. Here are some of the kinds of love relationships:

Non-Love: a casual relationship on the opposite end of the love spectrum. In a “non-love” relationship, there exists no intimacy, passion, or commitment. This may be a friendship.

Liking: the experience we have with certain friends and people we know that involves an increase in the level of intimacy, without passion or commitment.

Infatuation: infatuation is a type of love that involves passion without intimacy and commitment. Perhaps, it may be the way we feel about a television husband or a rock star.

Empty Love: this tends to be a relationship that is one-sided, but committed. Empty love not reciprocated, and involves no intimacy, or passion.

Romantic Love: Romantic love can involve intimacy and passion but may or may not involve commitment.

Fatuous Love: this is a rare type of love that involves both passion and commitment, but no intimacy. Fatuous love is a type of love that’s likely to fail.

Companion Love: in this type of love relationship, there is intimacy and commitment, but no passion. This may involve many workable and functioning marriages – the passion may be gone, but the commitment and intimacy remain.

Consummate Love: Consummate love involves all three elements: passion, commitment, and intimacy.

Levels of Romantic Relationships:

There are a number of levels that people go through while they’re looking for a partner, a romantic relationship. Here is a simplified list of the types of levels in romantic relationships:

Booty Call/Hook-Up: This, as you’d imagine, is a repeated hook-up with the same person over time. There’s passion and intimacy without commitment.

Friends with Benefits: probably the most complicated in all types of romantic relationship levels, friends with benefits are two people who are friends that sleep together. Unfortunately, this often ends in a loss of a friendship.

Lovers: those who are intimate and passionate have deep feelings for each other, though they may never progress to the next level and involve any type of commitment.

Dating: seeing each other and dating means that a level of commitment has been achieved; alongside passion and intimacy. Depending upon the partnership, it may progress into a real relationship.

Significant Other/Romantic Partner: it’s not just sex, it’s not just dating – you guys are SERIOUS about one another. And the world knows it.

Types of Romantic Relationships:

While many romantic relationships end in either a relationship breakup or marriage, there are other types of romantic relationships out there. Here are a few types of romantic relationships:

Closed Relationship/Marriage: This is a relationship in which there is no emotional or physical intimacy outside of the marriage or partnership.

Cohabitation: an arrangement in which two unmarried individuals in a romantic relationship live together without being married.

Domestic Partnership: a personal relationship in which two people live together and share a domestic life but are neither joined by a civil union or marriage.

Common-Law Marriages: an interpersonal status that is legally recognized in certain areas as a marriage without a marriage ceremony or civil union.

Civil Union: a legally recognized form of partnership that’s similar to marriage, often for those in same-sex relationships.

Open Relationship/Marriage: This is a relationship in which there is an expectation of multiple partners within the relationship, all of whom are on equal footing.

Intentional Family are those who chose each other as family, regardless of whether they choose to be sexual with one another or not.

Polyamory – people who have multiple relationships, when held in a position of trust and open communication. Sometimes referred to as “open” relationships,” polyamory reflects a non-monogamous lifestyle.

Primary Relationship: This refers to the closest relationship within the polyamorous dynamic. Sometimes there is a dominant “couple” within the relationship dynamic.

Things To Consider At The Beginning Of A Romantic Relationship:

While no romantic relationship is perfect, during the beginning stages of a relationship, or the “honeymoon phase,” we may find ourselves overlooking a lot of things because we’re infatuated with each other. That’s okay, but to learn to have healthy relationships, you must begin to see your partner as he or she really is.

Keep the following in mind at the beginning of a romantic relationship:

• Does my partner make me feel appreciated?
• Does my partner make me feel free to be me?
• Does my partner make me feel understood?
• Does my partner make me feel valued?
• Does my partner respect me?
• Does my partner control me?

Make sure that your partner understands what you want and need from him or her in terms of the romantic relationship.

Together, explore your feelings about values, beliefs, needs and the expectations you want from a partner.

Bring up how YOU feel love is shown. Ask your partner how he or she defines love.

Discuss conflict resolution – even in the early stages of a relationship, any long-term relationship will have conflicts. How will you work together to solve them.

Tips for Healthy Romantic Relationships:

There are a lot of relationship don’t-do-this-or-else advice. What about how to maintain a healthy normal romantic partnership? How does one maintain a healthy romantic partnership?

Here are some tips:

When looking for a relationship, approach it from an attitude of “What can I bring to the relationship?” rather than “what can I get out of it?” This is the attitude that fosters healthy relationships.

Don’t confuse “loving someone” with “needing someone.” Need is based upon insecurity and codependence which can lead you to believe that you cannot live without them. When you love someone – really love them – you know that you can be happy alone and continue to love that person regardless of your romantic relationships.

You cannot depend upon a partner for your own happiness – happiness is something that you must create and foster within yourself.

Happiness is something you yourself bring into a relationship.

Take care of your own well-being. If you don’t, you will only attract someone at the same emotional level or lower. If I am healthy, I will attract a healthy partner. If I am emotionally unhealthy, I will attract emotionally unhealthy partners.

Do not hold your partner to expectations unless they have been previously discussed and agreed upon.

Take responsibility for your own emotions – not the emotions of others around you. You can only control yourself and the way you react to certain events.

Learn to tell your partner specifically what you need from him or her.

It’s up to you to ask for help than expect someone else – including a partner – to do something to make you feel better.

You can feel sorry for your partner if he or she is hurting – but you don’t have to be the person who feels guilty for causing the pain. If your partner EVER expects you to feel guilt or tries to play on your susceptibility toward guilt, reevaluate your relationship with your partner.

When talking about your emotions to your partner, learn to explain these emotions without placing the blame on your partner – take responsibility for being insecure or defensive.

Remind yourself that sometimes, when you talk about your feelings, you may trigger your partner to feel defensive – he or she may feel blackmailed, manipulated, responsible or pressured – even if that’s not what you meant to have happen.

Healthy relationships are based on respect. Treat each other with dignity.

When you feel badly about something you’ve done – tell your partner immediately and ask for forgiveness.

If your partner doesn’t accept your apology, you must forgive yourself. You can only give an apology – not force someone to accept it and forgive you.

Relationships are give and take. You should not be doing all the giving or the taking. It’s a partnership.

Don’t assume you know how your partner feels. If you don’t know how he or she feels – ask.

Communication in Romantic Relationships:

There are several things to keep in mind when talking to your partner (or, really, anyone). Here are some tips for communication in romantic relationships:

Feelings are not up for debate. Ever.

It’s not worth it to try to explain why you feel the way you feel to someone who isn’t interested.

Logic never heals emotional wounds.

Feelings shouldn’t be expressed indirectly, through sarcasm (a sign of resentment, hurt, anger, and bitterness). Identify and explain your feelings as you understand them.

Feelings may not be consistent – expecting them to remain the same will lead to resentment and disappointment.

Defending your feelings often puts other people on the defensive, so it’s not a worthwhile communication technique.

Invalidating your partner is one of the quickest ways to kill the relationship.

Don’t behave judgmentally toward your partner – it will only serve to drive you apart.

State your feelings starting with, “I feel (emotion)” and wait for your partner to respond – don’t try to force explanations.

Take a time out and a step back (I call it “taking 5”) when you feel like you’ve been attacked, are hostile or angry.

Ask your partner how he or she would feel before making any decisions that affect the two of you.

Don’t use your partner’s words against him or her – this is a particularly damaging way to attack someone.

Handling Negative Feelings In A Romantic Relationship:

There are some general guidelines to both promote effective communication and working toward a solution with your partner.

Read more about feelings.

1. Figure out what feeling you’re feeling.
2. Tell your partner with an “I feel (emotion).”
3. Wait for your partner to respond.
4. Identify your feelings about their response.
5. Use those feelings to help determine how you feel about the relationship – should you invest more or less in your partner.
6. If several relationships show a pattern; the same feelings in a relationship with a different partner, you may want to work on managing your own emotional needs.

Problems Within Romantic Relationships:

It’s not a question that every romantic relationship comes with problems. After the “honeymoon period” is over, the real you comes out and problems may emerge.

Here are some of the major problems in romantic relationships:

Jealousy – while jealousy is a natural feeling, in a romantic relationship, jealousy can become problematic when you – or your partner – begins to experience it. Typical things people may be jealous over include:

• Friendships of the opposite sex
• Time spent at work
• Time spent with friends

Read more about jealousy.

Infidelity – while infidelity is often associated with sexual activity with another person, there are several types of infidelity.

1. Emotional infidelity occurs when there is an emotional – but not physical – romantic involvement to someone who is not your partner.
2. Physical infidelity occurs when one partner decides to have sexual relations with someone who is not his or her partner.
3. Affairs – an affair occurs when emotional infidelity and physical infidelity mix.

Infidelity can greatly impact romantic relationships.

Read more about infidelity here.

Dating Abuse – while most people don’t assume that people who are simply “dating” or in a romantic relationship can be abused. It’s untrue. One does not have to be married to be abused. Intimate partner rape and intimate partner abuse is fairly common and underreported.

Read more about domestic abuse.

Feeling Under-Appreciated – many people in long-term romantic relationships end up feeling under-appreciated by their partner. Once you can see a pattern (example below) emerge, you can take what you see and take it to your partner using specific examples.

• Becky writes a resource page about relationships. Her partner shrugs.
• Becky edits 300 posts and schedules them for The Band. Her partner says, “I could’ve done more.”
• Becky cleans the whole house and purges it. Her partner criticizes the way she got rid of “too much stuff.”

The pattern remains the same – different scenarios, but Becky is left feeling like her partner doesn’t appreciate her.

Tips For Trying To Mend A Romantic Relationship:

Couples Counseling in Romantic Relationships:

Another way to manage conflict in relationships is to consider couples counseling. Therapy provides a safe place to share your feelings, concerns, worries, and positives in an objective forum. The therapist, who should specialize in family or couples work will be able to help develop communication skills and coping strategies. Some things to consider when seeking couples therapy:

• It is normal to seek therapy
• Seeking therapy does not mean that your relationship is failing or falling apart
• Your therapist should not be seeing you or your partner individually as well
• The therapist is not there to take sides or prove that one person is right and one is wrong
• Therapy takes thought and work
• The goal of couples therapy is to develop communication skills

Getting Back Into Dating After Divorce:

With the divorce rate hovering around 50% in the US, many individuals will be thrust back into the dating scene after being in a monogamous relationship for many years. Putting yourself out there after divorce can be downright terrifying.

Here are some suggestions for dating after divorce:

Develop and maintain a new support group. While old friends are great, new friends can help you better to adapt to your new life. When a divorce happens, generally friends take sides or refuse to get involved. They may also feel jealousy that you’re now free from your marriage. New friendships can help remind you that dating isn’t as scary as it may feel.

Remind yourself that you’re worth it, dammit! After the stress of a crumbled relationship, you may find yourself feeling particularly low about your own worth. It’s hard to not feel like the divorce was your fault – even if it wasn’t. So remind yourself every single day that you’re worth it. Make a list of awesome things about you and pull it out whenever you’re feeling low. This can avoid the trap of dating someone who, because your self-worth is so low, will treat you poorly.

Get your ass out there. You’re not going to find a romantic relationship holed up on the couch. Think of this time post-divorce as an opportunity to do the things you weren’t able to do in your marriage. Create a list of 10-15 activities you’d like to do, then follow that list. You can find romance in the most bizarre of places!

Don’t jump before looking. A lot of people, especially when we’re in emotional pain, tend to look for another relationship to jump immediately into post-divorce. Make sure you’re not doing this – it’s not healthy, it’s not appropriate, and you need to feel your feelings and heal before you jump into a new relationship.

Getting Back Into Dating After Partner Loss:

When we lose our partner to death, the very concept of dating can make us want to throw up our hands and hide. While much of the dating advice for widows is similar to that of someone who has been divorced, the grief process is much different when we’ve lost our partner.

Expect backlash – a lot of people will thumb your nose at you whenever you begin dating again – either they believe you’re “dating too soon” or “not grieving enough.” Fuck ’em. There is no timetable on grief and no rules for how and when a widow can and should date.

Reevaluate your own needs – you have the time to explore what you would want in a partner at this stage in your life. Use this opportunity to think about what an ideal relationship would look like for you; what you want out of a partner and what you can give someone in return.

Give yourself time to heal. Without allowing those wounds of losing your partner to close, you may jump into an unhealthy relationship – something you do NOT need.

Take baby steps: Take baby steps when you’re venturing into the dating world – rather than meet someone new for dinner on a moonlit yacht, catch a cup of coffee or something low-key.

Dating…With Kids:

As many of us have been divorced or widowed also have children, there is an additional element to deal with while dating: your children (or your partner’s children).

Don’t hide your children. Many people feel like having children may be seen as a downfall. Children are never downfalls or something to be “dealt with.” Be upfront about your children to your date immediately. If he or she can’t handle dating a single parent, you don’t need that person in your life.

Wait -n- See. It’s recommended that before you introduce your partner to your children, you should make sure that your relationship is going to go the distance. Children – especially small ones – get attached quickly to other adults. And if they’ve already experienced the loss of your breakup, it’s wise to wait and make sure your partner is worth it.

Presents! Kids love stuff. When you introduce your children to your partner, have your partner bring a small gift for the children. Nothing extravagant, just a little something.

Don’t force it. Try as you may want, it’s inappropriate to force your children to like your partner. It may feel daunting, especially if your children express their displeasure at your partner, but reassure them that they still matter to you.

Page last audited 8/2018

Adoption Resources

by Band Back Together | Jul 28, 2018

What Is Adoption?

Adoption is a process in which a person assumes parenting for another, and, while doing so, permanently transfers all rights and responsibilities from the original parent or parents. Unlike guardianship, or other systems designed to care for the young, adoption is intended to be a permanent change in status that requires legal and/or religious sanction. Modern systems of adoption are often governed by many statutes and regulations.

Each year over 150,000 children are adopted in the United States. This number includes adoptions from foster care, relatives, private adoptions and international adoptions.

Children living in foster care are the largest population waiting to be adopted.

Of the 450,000 children in the system, over 125,000 are waiting for adoption. They’ll typically wait for over two years for a family to take them into their home. Many of these children will reach their 18th birthday without finding an adoptive family.

National Adoption Day and The Dave Thomas Foundation are committed to finding adoptive families for children, especially those who are in foster care. These organizations have wonderful communities for adoptive families, adoptees, and caregivers.

More than 15,000 of those adoptions each year are international adoptions, with most of those being from China, Ukraine, Russia, and Guatemala. Forty percent of the children adopted from other nations are under the age of one. China’s orphans are primarily girls while the other countries are equally dispersed.

How Do Adoptions Originate?

Adoptions may occur between family members or entirely unrelated individuals. Approximately half of the adoptions in the US are currently performed between related individuals, such as is the case with stepparent adoption, in which the new partner of a parent may legally adopt a child from a previous relationship. Intra-family adoption may also occur through child surrender, as the result of parental death, or when the child cannot otherwise be safely cared for.

Why Do People Adopt?

There are many reasons why people choose to adopt a child or children.

One of the primary reasons that people adopt a child is because they are infertile, or unable to carry a child of their own. It’s estimated that 11-24% of infertile Americans try to build a family through adoption.

There are a large number of reasons why people adopt, although not all are well documented. Some adopt children because they feel a conviction (religious or philosophical) to adopt, others want to begin a new family following divorce or death of one parent. Others adopt to avoid contributing to the perception of an over-crowded world or because they do not want to pass down genetic disorders like Tay-Sachs.

A recent study of women who choose to adopt suggest that these women are most likely to be between the ages of 40-44, married, have infertility issues, and are childless.

What Are The Types Of Adoptions?

Adoptions can occur between family members or unrelated individuals. Current data suggests that about half of the adoptions in the US are between related individuals. Unrelated adoptions can include the following types of adoption:

1) Private domestic adoptions – in a private domestic adoption, charities and for-profit organizations act as the middle man, bringing together prospective birth families and adoptive families. All parties must be of the same country. An alternative to a private domestic adoption occurs when the middle man is removed and birth families and adoptive families communicate directly, drafting contracts with a lawyer.

Private domestic adoptions account for a large percentage of all adoptions: in the US, almost 45% of all adoptions are estimated to have occurred via private adoption agencies and/or arrangements.

2) Foster Care Adoption: In this type of adoption, a child is initially placed in the foster care system, then placed for adoption. Children may enter the foster care system for a number of reasons, maltreatment and parental neglect are just a few of the reasons children end up in foster care. There are over 100,000 children in the US foster care system waiting to be adopted. Approximately 40% of all adoptions in the US are from the foster care system.

3) International Adoption: in international adoption, a child is placed up for adoption outside the child’s country of birth and can occur via public or private agencies. The laws in different countries vary in their willingness to allow international adoptions. Due to the amount of corruption and exploitation that occasionally accompanies international adoptions, there has been an effort to protect both the birth families and adoptive families from this abuse. In the US, less than 15% of adoptive families chose international adoption.

4) Embryo Adoption: the concept of embryo adoption is that remaining embryos from a couple’s IVF treatments are donated to another person or couple. These donated embryos are then placed inside the uterus of the adopted woman in order to facilitate pregnancy and childbirth. In the US, embryo adoption is governed by property law rather than the court systems.

5) Surrogacy: is an arrangement in which a woman carries and delivers a child for another couple or another person. The surrogate mother may be the child’s genetic mother (in the case of traditional surrogacy) or genetically unrelated to the child (in the case of gestational surrogacy).

What Are The Forms of Adoption?

Each type of adoption has its own set of requirements but in the end, the result is the same: a child being united with a family and a family is completed. Adoptions can take many forms: open adoptions, semi-open adoptions, and closed adoptions. These types of adoptions are discussed in further detail below:

Open Adoption:

Open adoption allows all information to be shared between the adoptive and biological parents. Open adoption can be a very informal arrangement that’s allowed to be terminated by the adoptive parents who have sole authority over the child. Other open adoptions are bound by a legally-enforceable, binding agreement which covers visitation rights, exchange of information, and other information about the adopted child.

Advantages for Open Adoption:

Those who experience an open adoption have their own unique experiences. These are some of the possible advantages of having an open adoption, including

Advantage of Open Adoption for Birth Parents:

• Feeling of control – the process in which a birth family can review, interview, and choose parents for your child can provide birth parents with a feeling of empowerment, control, and security.
• Lessened fear – when regular communication occurs between the adoptive family and the birth family, any concerns about the child’s well-being can be placed to rest.
• Relationship with the child – as an open adoption allows for more frequent interactions, there is a possibility of the development of a relationship with the child.
• Relationship with the adoptive family – because of the open lines of communication, there is an opportunity to develop a positive relationship between the adoptive and birth families.
• Lessened mourning – being able to speak with the child and his or her adoptive family helps the birth family to deal with the loss and grief of an adoption.
• Lessened uncertainty – most birth families feel comforted and reassured about their child’s well-being through regular interactions with the child’s adoptive family.
• Lessened guilt – since the lines of communication remain open and the relationship between families open, there’s less of a struggle with grief for birth parents.

Advantage of Open Adoption For Adoptive Parents:

• Reduction of fear – because there is on-going communication between the birth-family and the adoptive family, any concerns about the intentions of the birthmother can be eliminated.
• Relationship with the birth family – there’s an opportunity for the birth family and adoptive family to develop a healthy, positive relationship.
• Medical information – an open adoption allows for increased opportunities for more medical information if the need arises.
• Affirmation – an adoptive family may feel encouraged knowing that they were chosen specifically by the birth family.
• Understanding – an open adoption allows the child to understand more about his or her history so that the child can answer questions like, “who am I?” and “where did I come from?

Advantages of Open Adoption For Adopted Child:

• Understanding identity – open adoption does allow the adopted child to learn his or her family history, which can make it easier for adopted children to understand who, exactly, they are.
• No sense of abandonment – because the child can openly communicate with the birth family, the feelings of abandonment experienced by the child may be lessened.
• Medical information – as the child ages, he or she may need a more detailed medical history.
• Relationships – open adoption offers the adoptive child the potential of developing a relationship with his or her birth mother and extended family.
• Support network – as most birth families continue to be concerned about their adoptive child, the birth family can act as advocates and a support system for the child.

Disadvantages to Open Adoptions:

Open adoption occurs when potential birth parents and prospective adoptive families are able to have personal interaction. All identities are shared, and interaction may include emails, letters, telephone calls, and/or visits. Like all other forms of adoption, there are disadvantages to open adoption.

Disadvantages of Open Adoption For Birth Parents:

• Potential for disappointment – if the adoptive family fails to meet expectations when meeting with the birth family, this can lead to crushing disappointments.
• Feeling obligated – once an adoptive family has been financially involved or emotionally invested with a birth family, a birthmother may feel as though she must adopt her child to this family.
• Abused trust – the relationship with the adoptive family does allow the potential for abuse of trust, such as manipulation of situations.
• Changing minds – an adoptive family can choose to stop or terminate the adoption process at any time, which can lead to the child being placed in limbo, possibly foster care, until alternate arrangements have been made.

Disadvantages of Open Adoption for Adoptive Family

• Unstable relationships – an adoptive family may learn that their relationship with the birth family includes an unhealthy or emotionally unstable birth family member.
• Added support – an adoptive family may feel the pressure to be an emotional support system for the birth family.
• Added pressure – the birth family may want a greater amount of openness than the adoptive parents do, which may lead to the adoptive family to accept the demands of the birth family because they fear if they do not, they will not receive the baby.

Disadvantages of an Open Adoption for the Adopted Child:

• Feelings of rejection – if contact between the birth family and the adoptive family ceases, the child may feel intense rejection.
• Confusion – as the child grows, he or she may struggle with issues of identity from trying to make sense of the family history of two separate families.
• Social Anxiety – an adoptive child who has ongoing communication with his or her birth family may have trouble explaining the family dynamics to his or her peers.
• Power Plays – the adoptive child may attempt manipulation between the adoptive and birth families by playing them against one another.
• Reduction in ability to assimilate into the adoptive family – increased interaction with birth family may lead to challenges for the child in assimilating into the adoptive family.

Semi-Open Adoption:

A semi-open adoption is a process by which a potential birth mother (or birth families) exchange non-identifying information with the adopting family.

Generally speaking, semi-open adoptions are facilitated through a third party – an adoption agency or adoption attorney. The identity of all parties is typically kept confidential, the interaction between families is generally with emails and letters. Sometimes, emails or visits are arranged in a semi-open adoption.

Advantages of a Semi-Open Adoption:

Experiences with semi-open adoptions vary wildly and from person to person. However, some of the common advantages of a semi-open adoption are broken down below:

Advantages of Semi-Open Adoption for Birth Parents:

• Sense of privacy as all communication and interaction between birth parents and adoptive families are facilitated by a third party.
• Feeling in Control – birth parents can feel more in control as they have the chance to review, interview and select the adoptive parents for their child.
• Fewer Uncertainties – the interactions and updates given by the adoption agency can comfort birthmothers by reassuring them that the child is well cared for.
• Less Guilt – getting updates and letters from the adoptive family can help birthmothers feel less guilt for placing their child up for adoption.
• Lessened Mourning – placing a child up for adoption is a loss and must be grieved. Having regular updates about the child via letters and visits can help with the sense of loss experienced.
• Less Fear – with on-going communications between the birth family and adoptive family, birth parents often feel more secure about the well-being of the child.

Advantages of Semi-Open Adoption for Adoptive Parents:

• Medically informed – while a medical history of the birth parents is a normal part of the adoption process, a semi-open adoption allows for access to additional medical needs, if circumstances require it.
• Feeling Encouraged – Because the birthmother hand-picked the adoptive family, the adoptive family can feel reaffirmed and empowered.
• Less fear – when the intentions of the birthmother and her family are openly communicated to the adoptive parents, it helps to reduce the concerns and fears regarding the intentions of the birthmother.
• Clear Roles – having a semi-open adoption allows the roles of each party to be better managed and more clearly defined.
• Increased Confidence – While there is less communication between the birth family and the adoptive family, the adoptive family is still able to ask questions and address concerns about the child’s history.

Advantages of Semi-Open Adoption for The Adopted Child:

• Understanding self – in a semi-open adoption, adopted children who have access to their birth families allows them to gather more information about family history and help answer questions such as “who am I?” and “where did I come from?”
• No search required – there is no issue of the child needing to seek out his or her birth parents.
• Not Feeling Abandoned – because the child has access to his or her birth family, the child may feel less a sense of abandonment.
• Medical Information – while medical information is a standard part of an adoption, a semi-open adoption allows for the child to ask medical questions of the birth family throughout their life.

Closed Adoption:

A closed adoption is an adoption process in which there is no interaction between the birthmother and the prospective families. Once a standard procedure for adoption, all identifying information is sealed, preventing disclosure of the adoptive parents, biological kin, and adoptees identities. However, closed adoption does allow for the transmission of non-identifying information, like medical history, religious and/or ethnic background.

Advantages of A Closed Adoption:

Like any other form of adoption, the experiences of a closed adoption may vary wildly. Some of the advantages of a closed adoption may include:

Advantages of Closed Adoption For Birth Parents:

• Closure – some birth families report that a closed adoption allowed them the sense of closure to move on with their lives.
• Privacy – people who feel threatened or vulnerable by their decision to place a child up for adoption may benefit greatly from having a closed adoption.
• Reduction of fear – birthmothers who have concerns about explaining their decisions to others may find that a closed adoption offers them a way to avoid that conversation.

Advantages of Closed Adoption for Adoptive Parents:

Absence of boundaries – because the birth family has nothing to do with the adopted child, there’s no risk for complications that may arise from interference by the birth parent or co-parenting concerns.

Freedom – when the birth family is not involved with the child after the adoption, the adoptive parents are free to enjoy their family without the potential threat from outside intrusion.

Advantages of Closed Adoption For Adopted Children:

• Protection – closed adoption affords a layer of protection for adopted children who may have unstable or emotionally disturbed birth family members.
• Absence of boundaries – the adopted child is always sure who calls the shots, makes the rules, and abides by them, as there is no meddling or concerns from the birth family.

Disadvantages To A Closed Adoption:

Closed adoption occurs when there is no contact or interaction between birth families and prospective adoptive families. No identifying information shall be revealed, though non-identifying information, such as medical records, will be made available to all parties. There are a number of disadvantages to closed adoptions.

These disadvantages to closed adoptions are discussed in further detail below:

Disadvantages of Closed Adoption for Birth Parents:

• Delayed grieving – the grieving process of adopting a child can be complicated, as there is no information to be given about the child’s progress.
• Denial – placing a child in an adoptive family through closed adoption can lead to feelings of denial that the child was ever born and placed for adoption.
• Guilt – a closed adoption does not allow the birth family to explain the reasons that the child was placed for adoption, which can lead to feelings of extreme guilt.
• Lack of information – lack of information about the child can compound feelings of guilt and denial, leaving many birth families struggling with depression.
• Abandonment – many birthmothers report feeling as though they are abandoning their child, and the inability to communicate with her child can only heighten these feelings.

Disadvantages of Closed Adoption For Adoptive Parents:

• Denial – a closed adoption can increase feelings of denial about having an “adopted child,” or “fertility status.”
• Fear – adoptive families fear that the birthmother will return and demand the child back. This fear is a consequence of limited information about the birth family.
• Control – there is less personal control for the adoptive family who must rely upon the adoption agency to act as a go-between.
• Medical history – while most children who are adopted have a medical history, if medical issues arise later in life, it may be impossible to get more information about medical issues from the birth family.

Disadvantages for a Closed Adoption For The Adopted Child:

• Confusion – as the adopted child ages, he or she may struggle with personal identity as he or she has no contact with his or her birth family.
• Information – children involved in a closed adoption have limited information about their birth families and history. This lack of information can lead a void in an adopted child who has many unanswered questions about his or her heritage.
• Preoccupation – a child in a closed adoption may be preoccupied with his or her adoption than other children.

How Do I Begin An Adoption?

Deciding to pursue an adoption can feel overwhelming and scary; the process is long and involved. Here are some steps you’ll need to go through to begin an adoption:

1) Teach yourself and your family members about adoption, learn all that you can about the types of adoptions, the restrictions these adoptions require, and the approximate cost for each type of adoption. It may help to have a binder and notebook to write yourself notes and reminders.

2) Decide what type of adoption you want to pursue: domestic, international, foster care adoptions, and make a list of the adoption agencies that you’re interested in. Read reviews of the agencies, ask for references from friends, family, and coworkers, to find out which adoption agencies are legitimate and which are not.

3) Investigate ways to handle adoption expenses, which are substantial. These costs can include adoption agency feeds, legal fees, birthmother expenses, as well as home study expenses. The following are potential avenues to explore to off-set the costs of adoption:

• Employee Benefits – many employers offer adoption reimbursement, check with your Human Resources department to see if your company offers adoption reimbursement.
• Federal Tax Credit for adoption. Call 1-800-829-3676 and request information on the Adoption Tax Credit and Tax Exclusion from publication 968.
• State tax credit – contact an adoption specialist in your state to ascertain whether or not your state offers a tax credit for a child adopted from a public adoption agency.
• Military Benefits – many times, the US military will reimburse up to $2,000 per child for adoption costs.
• Dependency exemption – while not adoption-specific, adoptive parents do qualify for taking a dependency exemption on their income taxes, even if the adoption hasn’t been finalized.
• Adoption Loans – some banks, life insurance policies, and credit unions offer adoption loans.
• Private Grants – these grants are for families who are socioeconomically challenged or to encourage the adoption of special needs children. Call the National Adoption Foundation at (203) 791-3811 for more information

4) Once your research has been carefully completed, select an adoption agency or adoption facilitator and/or attorney. You’ll begin orientation with the adoption agency to discuss the adoption process. It’s recommended that you attend several orientations for different adoption agencies so that you get the sense of which agency is right for you.

5) Be ready to fill out oodles of paperwork, including an agency application form, along with various other forms that will be necessary for the adoption process to begin.

6) Once the adoption agency has reviewed and accepted your completed adoption application, you will undergo a home study. A home study is performed to evaluate the home environment and help the adoptive parents prepare for the arrival of their adopted child. The home study will include a visit from a social worker, educational classes with other adoptive families, a physical examination, fingerprints taken, and a background check performed. Average time for a completed home study is 2 months.

7) Begin to wait to be matched with a child. The waiting period depends upon a number of factors: it can take longer to adopt a Caucasian newborn (up to 5 years). Adopting another race may reduce the waiting period significantly. International adoptions may take longer than a year depending upon the requirements of the country.

8) Once you’ve been matched with a child and have decided to adopt this child, it’s time to file a petition to adopt.

9) After the birth parents have terminated their parental rights, and the child has been in the home for over six months, a social worker will submit a recommendation for approval. Then, a judge will finalize the adoption by awarding the adoptive parents the legal rights and responsibilities for their children. This final step will vary if an international adoption has taken place, as there are additional legal steps involved.

What Is Adoption Disruption?

Adoption disruption is a term that’s used when adoption is ended. Technically disruption occurs when the adoption has been abandoned by the adopting family before the adoption has been legally completed. In practice, however, adoption disruption can occur anytime an adoption is ended. Generally, the disruption of adoption requires a court petition.

Adoption disruption can occur for any number of reasons: psychological or emotional issues of the adopted child, unrealistic expectations of parenthood, or family issues among the adoptive families.

What Are Some Of The Challenges Of Adoption?

The process of adoption can be fraught with emotional upheaval and mountains of paperwork.

An adoption may be interrupted when there are changes in the law, expiration of paperwork in the case of a lengthy adoption process, or other unforeseen circumstances.  It is very beneficial for those going through the adoption process to seek social and emotional support for this reason.

Many families experience post-adoption challenges, as well. It is normal for adoptive parents and children to take time to bond and develop a family routine – this process can take longer for older children as they will be simultaneously dealing with loss from a previous living situation.

The decision of whether and how to discuss the adoption with family, friends, and the child can require much deliberation as well, especially as some families may experience insensitive comments from time to time.

Both birth parents and adoptive parents can experience depression after an adoption. In the case of a birthmother who has recently given birth, hormones coupled with the loss can trigger postpartum depression; the birth parents may have also developed an attachment to the child prior to the adoption and will grieve the loss of a child placed with an adoptive family.

Adoptive parents can find it difficult to cope with the sudden change in parenting status after an emotional adoption process and may suffer from Post-Adoption Depression Syndrome (PADS).

Additional Adoption Resources

How Long Does Adoption Take? – General information from The Adoption Guide.

Adopting.org offers an extensive site for all of those who have been touched by adoption.

American Adoptions – Resource site for those seeking information as adoptive parents or birth parents who are searching for an adoptive family.

Adoption Healing is a non-profit site for adoptive parents and adoptees seeking literature and support.

Open Adoption – Resource for those seeking an adoptive family.

United States Department of State Intercountry Adoption Site Government information site for those interested in adopting internationally.

Page last audited 7/2019

Adult Survivors of Childhood Sexual Abuse

by Band Back Together | Jul 18, 2018

What is Childhood Sexual Abuse?

Child Molestation or childhood sexual abuse is defined as the act of a person – adult or child – who forces, coerces or threatens a child to have any form of sexual contact or to engage in any type of sexual activity at the perpetrator’s direction.

Any sexual contact, whether it be overt or not, between a child and someone the child trusts, damages a child in countless ways.

Child sexual abuse is shockingly common – by the age of 18, one in five boys and one in three girls will have been the victim of child sexual abuse. Despite the prevailing myths surrounding childhood sexual abuse, we must make it very clear that BOTH girls AND boys can be the victim of childhood sexual abuse.

The sexually abused child will stop growing and developing emotionally when the first attack occurs. Recovery from child sexual abuse doesn’t begin until the sexual abuse survivor becomes an adult…if then.

What Are The Acts of Child Sexual Abuse?

Sexual intercourse is not the only way in which a child can be sexually abused or molested. Other child sexual abuse acts may include some combination of the following.

Offenses that include touching are:

• Fondling
• Penetration of a child’s vagina or anus with either a penis or an object when not performed for a valid medical reason
• Forcing a child to touch an adult’s sexual organs

Offenses without touching include:

• Exhibitionism or indecent exposure
• Masturbating in the presence of a child
• Presenting pornographic materials to a child
• Exposing a child to sexual intercourse on purpose

Sexual Exploitation can include:

• Creating pornography with children in photographs, film or any form of modeling
• Soliciting a child for prostitution

Three Stages of Impact of Childhood Sexual Abuse:

Stage I: Initial Reactions To Sexual Abuse

• Post-traumatic Stress Reactions – flashbacks, nightmares.
• Changes in normal child development.
• Cognitive distortions

Stage II: Accommodation To Ongoing Sexual Abuse

• Usage of coping behaviors to increase safety and reduce pain during sexual abuse. Coping behaviors include: memory suppression, denial, dissociation, Stockholm Syndrome, accommodation syndrome.

Stage III: Long-Term Elaboration and Reflections:

• Normal childhood development distorted.
• Ongoing coping responses to the abuse.

What Are Some Common Reactions to Child Sexual Abuse During Childhood?

Responses and reactions to childhood sexual abuse are varied from person to person and can include:

Emotional Isolation – children who live through sexual abuse feel emotionally isolated. Often, the abuser threatens the child he or she is abusing that the child must keep the secret. This burden of secrecy may continue well into adulthood. Keeping a secret like being sexually abused can make the child feel different, apart from others – like he or she isn’t “normal”.

Betrayed Trust – a child who has been sexually abused has also had their trust fragmented, especially if his or her abuser was a family member. Trusting other people – and even trusting yourself – after experiencing childhood sexual abuse can be very difficult.

Self-Blame and Guilt – children often misinterpret the reason that he or she was sexually abused. The child may feel as though the sexual abuse was his or her fault, or a punishment for misbehaving. The sexual assault perpetrator may even have told the child that he or she was “being punished” for “being bad.” As most children assume that adults are “right,” and the guilt and shame for being punished in such a violating manner can persist well into adulthood.

Triggers – childhood sexual abuse survivors often have things that trigger memories of the abuse. These triggers can include things like gynecological exams, childbirth, sexual touch from partners, certain smells, some colors, types of furniture or cars, can bring back memories that hold feelings about the abuse. These triggers can be very vivid and painful for a sexual assault survivor.

Challenges Affecting Adult Survivors of Childhood Sexual Abuse:

All victims of sexual assault take time to heal. Because childhood sexual abuse interrupted an important developmental process and broke feelings of trust during a particularly vulnerable time, adult survivors of childhood sexual abuse may have stronger, different reactions than other sexual assault survivors.

Mourning – an adult survivor of sexual abuse may come to realize just how much he or she lost after he or she was victimized. Childhood sexual abuse means loss of innocence, loss of childhood experiences, loss of trust, innocence, a normal family dynamic. These losses must be named, grieved, then buried, to move on with your life.

Depression – among childhood sexual abuse survivors, the highest reported symptom is depression.

Suicidal Ideation – adult survivors of childhood sexual abuse may think often about death, dying and wishing they would die. If you, or someone you love, is considering suicide, please call The National Suicide Prevention Helpline: 1-800-273-8255.

Anger – many children who were sexually abused grow to feel very angry – the type of anger that is directed at fate or a deity, not at a person or a situation. Adult survivors of sexual abuse may feel anger at themselves – for not preventing the abuse, anger at the abuser, or anger at parents/caregivers for not protecting the child from the sexual abuse. As a child, your anger was powerlessness – it had no effect on the abuser.

Relationship Difficulties – sexually abused children are at the whim of their abuser and what the abuser wants. The adult’s desires and wants come ahead of the child’s needs. Often, the sexual abuse has been kept secret for many years. As a result, adult survivors of sexual abuse may struggle in relationships. They may put the needs of their partner well before their own. They may have problems asserting themselves with their partner, colleagues, family and friends.

Romantic Relationship Difficulties: an intimate relationship involves some amount of trust, respect, love, and intimacy. Learning to trust after the broken trust of childhood sexual abuse is beyond difficult. While learning to trust again, adult survivors may vacillate from being un-trusting to too trusting. There may also be an unhealthy fear of intimacy which can lead adult survivors to flee from intimacy or cling too tightly for fear of losing the relationship.

Sexuality – the childhood sexual abuse survivor likely had his or her first experience with sex as a result of the sexual abuse. This can make sex and sexuality very confusing for an adult survivor of childhood sexual abuse. During sexual acts as an adult, body memories may flood the body, interfering with the ability to have normal sexual relationships, may make the survivor scared, ashamed, and frustrated. On the opposite end of the spectrum, some adult survivors become overly promiscuous as a result of that childhood trauma.

Self-Harming Behaviors – to avoid the overwhelming memories and feelings of being a sexual abuse survivor, many people resort to self-harm and self-injury. An adult sexual abuse survivor may cut, burn, or otherwise maim parts of their body – including the genitals.

Eating Difficulties – many adult survivors of childhood sexual abuse have problems with eating. They may also have issues with self-image. These problems with eating can involve starving themselves, binging and purging, or overeating.

Low Self-Esteem: due to the negative messages received by the abuser and internalized a result of childhood sexual abuse, low self esteem is common among adult survivors of childhood sexual abuse.

Substance Use and Abuse: due to the horrifying memories and jagged emotional scars left on adult survivors, many choose to self-medicate their problems away by using drugs and alcohol – leaving them numb. This clearly creates greater issues in the future.

How To Recover From Childhood Sexual Abuse:

People who seek out counseling or professional support of some kind have a chance to move forward and having a successful, safe and happy adult life. A therapist will be able to provide you with some coping techniques in order to move on with your life as a survivor, not a victim.

Adult survivors of childhood sexual abuse often develop strategies for survival to protect themselves from the trauma that occurred in their childhood. Many people never discuss the abuse with anyone which is not healthy and can lead to harmful coping techniques.

Treatment for Childhood Sexual Abuse:

After a therapist, trained in trauma and abuse counseling is located, this is what an adult survivor can expect from therapy. It’s important to note that if an adult survivor does not feel comfortable with a therapist, he or she should shop around to find a better therapist.

Early Phases of Therapy: an adult childhood sexual abuse survivor works with a therapist to build trust in preparation for the healing process. The adult survivor is encouraged to share their stories of childhood sexual abuse, which may be difficult. Many of these memories may be jumbled up, fragmented, not along a timeline or continuum.

Middle Phases of Therapy: This is where the hard work of therapy begins, including reprocessing the trauma in these steps:

1. Acknowledge the childhood sexual abuse and the impact it has had on the adult survivor’s life.
2. Experiencing, then releasing some of the feelings associated with the trauma. Many times, these feelings have been unexpressed until now.
3. Exploring the feelings toward the abuser, the non-protective parents or caretakers.
4. Then making cognitive reassessments about the abuse, exploring the “why did it happen?” and “who was responsible?”

Once these steps have been repeated over and over, the traumatic events are confronted then processed. The adult survivor is then un-stuck in time, and the abused child is integrated into the adult self, so they can work together toward a goal. Cognitive restructuring, education, and creation of new coping strategies are learned and experienced.

A clear line between the present and the past can then be drawn, which places the adult survivor in more control of his or her life.

Termination Phase: the adult survivor has been empowered to make choices and decisions without the counselor. This forces the adult survivor to establish other support networks, like self-help group, friends, partners or other family members.

Self-Help For Adult Survivors of Childhood Sexual Abuse:

Locate a therapist in your area who specializes in adult survivors of childhood sexual abuse and make an appointment.

It’s okay to not want to see a therapist, but you should talk about what happened to you. It will release the pent-up emotions you’ve been holding on to.

Remember that the abuse was not your fault – it does not mean that you are trashy, dirty, or bad. The shame you feel should be the shame felt by your attacker.

Don’t tell yourself that “you should be over it by now.” The sexual abuse occurred during a pivotal time in your life, it disrupted normal childhood development, and it destroyed your childhood.

Take the time you need to mourn the loss of your childhood, the loss of your innocence, the loss of trust. Acknowledge that these losses occurred and take the time you need to grieve each of them.

Do not rush the grieving process – all of those feelings have been suppressed for so long that it will take a good deal of time to work through them.

Tell yourself that you are strong, and you will become something better than your abuser tried to make you.

Get to know yourself, mentally and physically. Reclaim your body as your own. Baby steps. Always baby steps. Celebrate your progress no matter how big or small.

It’s okay to be afraid to let a partner get to know you too fast. Or to be intimate. You set your own pace. Take your time to learn to trust them and yourself.

You are allowed to tell your partner that you want to take a step back if you find that being intimate is more than you think you can handle. If they care about you, they will understand. And if they don’t understand, then you deserve someone better.

It’s okay to enjoy sex as just sex. It does not make you a bad person because you have physical needs. Your abuser did not do this to you.

How to Help An Adult Survivor of Childhood Sexual Abuse:

There are some ways that you can help an adult survivor of childhood sexual abuse.

Listen. Listen without judgment. If an adult survivor wants to tell you about what happened, know that this is a big leap of faith for them.

Tell them, “I believe you.” An adult survivor fears that people do not believe the sexual abuse occurred – often because they’ve been told that the abuse was all in his or her head.

Tell the adult survivor that you are always there whenever you need them – for whatever you need.

Don’t try to force them to talk about the sexual abuse. They’ve kept quiet about it for a reason.

If a male friend tells you that he is an adult survivor of childhood sexual abuse, it is extremely important that you tell him that you believe him. This is especially important as most men do not admit to being sexually abused.

Remind the adult survivor that it’s okay to trust their partner – their partner is not their abuser.

Don’t tell them time will heal all. While it may be true, it’s a cliche that sounds both dismissive and rude.

An adult survivor may worry about having kids, or being around kids, out of fear that they will perpetuate the vicious cycle of abuse. Tell them they are strong and can break the cycle.

If the adult survivor is nervous about having children, suggest a pet to ease into caring for someone dependent upon them.

Don’t tell them “it’s in the past.” For an adult survivor, it may still be very present in their minds.

Sexual Assault Hotlines:

National Sexual Assault Hotline: 1-800-656-HOPE

The National Suicide Prevention Helpline: 1-800-273-8255

Additional Resources For Adult Survivors of Childhood Sexual Abuse:

Wings Foundation A private, not-for-profit agency founded in 1982 to help break the cycle and heal the wounds of childhood sexual abuse.

Rape, Abuse and Incest National Network The United States’ largest anti-sexual violence organization.

American Humane Association Ensuring the wellness and well-being of children and animals. Unleashing the full potential of the bond between humans and animals to the mutual benefit of both.

HAVOCA is run by survivors for adult survivors of child abuse. We provide support, friendship and advice for any adult who’s life has been affected by childhood abuse.

Maple Syrup Urine Disease (MSUD) Resources

by Band Back Together | Jul 8, 2018

What Is Maple Syrup Urine Disease?

Maple Syrup Urine Disease (MSUD) is a very rare genetic metabolic disorder that is usually diagnosed in newborn infants characterized by deficiency of certain enzymes (branched-chain alpha-keto acid dehydrogenase complex) required to break down (metabolize) the three branched-chain amino acids (BCAAs) [Leucine, Isoleucine and Valine] in the body. The result of this metabolic failure is that all three BCAAs, along with their various byproducts, accumulate abnormally throughout the body. In the classic, severe form of MSUD, the plasma concentrations of the BCAAs begin to rise within a few hours of birth. If untreated, symptoms begin to emerge, often within the first 24-48 hours of life. Those with MSUD are unable to correctly process certain types of amino acids and proteins, which results in a sweet, maple syrup smell to show up in urine as amino acids build up to unhealthy levels in the body.

The “non-specific” symptoms include lethargy, irritability, and poor feeding, followed soon by focal neurological signs such as abnormal movements and increasing spasticity, and shortly thereafter, by convulsions and deepening coma. If untreated, progressive brain damage is inevitable and death ensues usually within weeks or months. The finding that is unique to MSUD is the emergence of a characteristic odor, reminiscent of maple syrup that can most readily be detected in the urine and earwax and may be smelled within a day or two of birth. If untreated, maple syrup urine disease can lead to seizures, coma, and death.

MSUD is thought to affect 1 in 185,000 newborns globally, although there is a higher occurrence of MSUD in Mennonite populations where it occurs in approximately 1 of every 380 infants.

MSUD is an inherited genetic disorder acquired when both parents carry the recessive gene. If one parent carries the disorder, the child may become a carrier without displaying any symptoms of MSUD.

Maple syrup urine disease is often classified by its pattern of signs and symptoms. The most common and severe form of the disease is the classic type, which becomes apparent soon after birth. Variant forms of the disorder become apparent later in infancy or childhood and are typically milder, but they still lead to delayed development and other health problems if not treated.

The disorder can be successfully managed through a specialized diet. However, even with treatment, both affected children and adults patients with MSUD remain at high risk for developing episodes of acute illness (metabolic crises) often triggered by infection, injury, failure to eat (fasting), or even by psychological stress. During these episodes there is a rapid, sudden spike in amino acid levels necessitating immediate medical intervention.

There are three or four types of MSUD: the classic type; intermediate type, intermittent type, and possibly a thiamine-responsive type. The various sub-types of MSUD have different levels of residual enzyme activity, severity, and age of onset. MSUD is commonly tested in newborns so that it may be caught early.

What Are The Sub-types Of Maple Syrup Urine Disease And Their Symptoms?

Diagnosis and Risks Associated With Maple Syrup Urine Disease:

Most infants with MSUD are identified through newborn screening programs. Tandem mass spectrometry, an advanced newborn screening test that screens for more than 30 different disorders through one blood sample, has aided in the diagnosis of MSUD. However, some infants who have mild or intermittent forms of MSUD may have totally normal amino acids after birth and can be missed by newborn screening. In areas in which the screening test is not available, a diagnosis of MSUD may be based upon the classic symptoms of the disorder.

Treatment for Maple Syrup Urine Disease:

Additional Maple Syrup Urine Disease Resources:

MSUD Family Support Group is a nonprofit organization that offers support and resources for those with MSUD and their families.

CLIMB (Children Living with Inherited Metabolic Disorders) is the National Information Center website in the UK and has incredible resources for those in the UK

Chiari Malformation Resources

by Band Back Together | Jul 8, 2018

What is Chiari Malformation (CM)?

Chiari Malformation is a disorder of the brain affecting at least 1 out of every 1000 people in the world. In the simplest terms, it is a condition where the cerebellum (the bottom part of the brain) squeezes out into the spinal canal. Chiari is almost exclusively diagnosed via MRI of the brain, but other types of scans may detect the disorder as well.

Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM).

Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord. The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.

Many people are born with the disorder but have no symptoms until adolescence or adulthood because of growth or progression of the herniation. Others can develop it from trauma or from a lack of spinal fluid.

The most severe forms of Chiari Malformation are detected at birth and may result in significant brain damage and disability.

What Causes Chiari Malformation?

CM has several different causes. Usually, these CM are caused by structural defects in the brain and spinal cord that occur during early fetal development. This can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients.

This is called primary or congenital Chiari malformation (by far the most common type of Chiari) It

Secondary (or acquired) Chiari Malformation occur later in life if the  spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to traumatic injury, disease, or infection.

What Are Some of the Symptoms of Chiari Malformation?

Headache is the hallmark sign of Chiari malformation, especially after sudden coughing, sneezing, or straining. Other symptoms may vary among individuals and may include:

• neck pain
• hearing or balance problems
• muscle weakness or numbness
• dizziness
• difficulty swallowing or speaking
• vomiting
• ringing or buzzing in the ears (tinnitus)
• curvature of the spine (scoliosis)
• insomnia
• depression
• problems with hand coordination and fine motor skills.

Some individuals with CM may not show any symptoms. Symptoms may change for some individuals, depending on the compression of the tissue and nerves and on the buildup of CSF (cerebrospinal fluid) pressure.

Infants with a Chiari malformation may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight.

Diagnosis of Chiari Malformation:

Currently, no test is available to determine if a baby will be born with a Chiari malformation, but as Chiari malformations are associated with certain birth defects like spina bifida, children born with those defects are often tested for CMs. However, some malformations can be seen on ultrasound images before birth.

Many people with Chiari malformations have no symptoms and their malformations are discovered only during the course of diagnosis or treatment for another disorder. The doctor will perform a physical exam and check the person’s memory, cognition, balance (functions controlled by the cerebellum), touch, reflexes, sensation, and motor skills (functions controlled by the spinal cord).  The physician may also order one of the following diagnostic tests:

• Magnetic resonance imaging (MRI) is the imaging procedure most often used to diagnose a Chiari malformation. It uses radio waves and a powerful magnetic field to painlessly produce either a detailed three-dimensional picture or a two-dimensional “slice” of body structures, including tissues, organs, bones, and nerves.
• X-rays use electromagnetic energy to produce images of bones and certain tissues on film.  An X-ray of the head and neck cannot reveal a CM but can identify bone abnormalities that are often associated with the disorder.
• Computed tomography (CT) uses X-rays and a computer to produce two-dimensional pictures of bone and blood vessels. CT can identify hydrocephalus and bone abnormalities associated with Chiari malformation.

How Are Chiari Malformations Classified?

Chiari malformations are classified by the severity of the disorder and the parts of the brain that protrude into the spinal canal.

Chiari malformation Type I

Type 1 happens when the lower part of the cerebellum (called the cerebellar tonsils) extends into the foramen magnum.  Normally, only the spinal cord passes through this opening.  Type 1—which may not cause symptoms—is the most common form of CM.  It is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition.  Adolescents and adults who have CM but no symptoms initially may develop signs of the disorder later in life.

Chiari malformation Type II

Individuals with Type II have symptoms that are generally more severe than in Type 1 and usually appear during childhood.  This disorder can cause life-threatening complications during infancy or early childhood, and treating it requires surgery.

In Type II, also called classic CM, both the cerebellum and brain stem tissue protrude into the foramen magnum.  Also the nerve tissue that connects the two halves of the cerebellum may be missing or only partially formed.  Type II is usually accompanied by a myelomeningocele—a form of spina bifida that occurs when the spinal canal and backbone do not close before birth.  (Spina bifida is a disorder characterized by the incomplete development of the brain, spinal cord, and/or their protective covering.)  A myelomeningocele usually results in partial or complete paralysis of the area below the spinal opening.  The term Arnold-Chiari malformation (named after two pioneering researchers) is specific to Type II malformations.

Chiari malformation Type III

Type III is very rare and the most serious form of Chiari malformation.  In Type III, some of the cerebellum and the brain stem stick out, or herniate, through an abnormal opening in the back of the skull.  This can also include the membranes surrounding the brain or spinal cord.

The symptoms of Type III appear in infancy and can cause debilitating and life-threatening complications.  Babies with Type III can have many of the same symptoms as those with Type II but can also have additional severe neurological defects such as mental and physical delays, and seizures.

Chiari malformation Type IV

Type IV involves an incomplete or underdeveloped cerebellum (a condition known as cerebellar hypoplasia). In this rare form of CM, the cerebellum is located in its normal position but parts of it are missing, and portions of the skull and spinal cord may be visible.

Treatment for Chiari Malformation:

Treatment for Chiari Malformation is varied. Most patients are first treated by a neurologist, with medications being used to reduce headaches or other symptoms. Many patients are able to be managed without surgery; however, if medication does not work or the cerebellar herniation gets worse, surgery is usually recommended to provide more room for the herniated brain structures.

Outcomes from surgery vary widely depending upon the patient, the severity of the herniation, and the damage done before surgery.

Some CMs do not show symptoms and do not interfere with a person’s activities of daily living. In these cases, doctors may only recommend regular monitoring with MRI imagining. When people experience pain or headaches, doctors may prescribe medications to help ease symptoms.

Surgery

In many cases, surgery is the only treatment available to ease symptoms or halt the progression of damage to the central nervous system as surgery can improve or stabilize symptoms in most people. More than one surgery may be needed to treat the condition.

The most common surgery to treat Chiari malformation is posterior fossa decompression which creates more space for the cerebellum and relieves pressure on the spinal cord. The surgery involves making an incision at the back of the head and removing a small portion of the bone at the bottom of the skull (craniectomy). In some cases the arched, bony roof of the spinal canal, called the lamina, may also be removed (spinal laminectomy). The surgery should help restore the normal flow of CSF, and in some cases it may be enough to relieve symptoms.

Next, the surgeon may make an incision in the dura, the protective covering of the brain and spinal cord.  Some surgeons perform a Doppler ultrasound test during surgery to determine if opening the dura is even necessary.  If the brain and spinal cord area is still crowded, the surgeon may use a procedure called electrocautery to remove the cerebellar tonsils, allowing for more free space.  These tonsils do not have a recognized function and can be removed without causing any known neurological problems.

The final step is to sew a dura patch to expand the space around the tonsils, similar to letting out the waistband on a pair of pants.  This patch can be made of artificial material or tissue harvested from another part of an individual’s body.

Infants and children with myelomeningocele may require surgery to reposition the spinal cord and close the opening in the back.  Findings from the National Institutes of Health (NIH) show that this surgery is most effective when it is done prenatally (while the baby is still in the womb) instead of after birth. The prenatal surgery reduces the occurrence of hydrocephalus and restores the cerebellum and brain stem to a more normal alignment.

Hydrocephalus may be treated with a shunt (tube) system that drains excess fluid and relieves pressure inside the head.  A sturdy tube, surgically inserted into the head, is connected to a flexible tube placed under the skin.  These tubes drain the excess fluid into either the chest cavity or the abdomen so it can be absorbed by the body.

An alternative surgical treatment in some individuals with hydrocephalus is third ventriculostomy, a procedure that improves the flow of CSF out of the brain.  A small hole is made at the bottom of the third ventricle (brain cavity) and the CSF is diverted there to relieve pressure.  Similarly, in cases where surgery was not effective, doctors may open the spinal cord and insert a shunt to drain a syringomyelia or hydromyelia (increased fluid in the central canal of the spinal cord).

Chiari Malformation and Associated Conditions:

There are a number of other conditions that often occur when a person has CM. These may include:

Hydrocephalus is an excessive buildup of CSF in the brain. A CM can block the normal flow of this fluid and cause pressure within the head that can result in mental defects and/or an enlarged or misshapen skull. Severe hydrocephalus, if left untreated, can be fatal. The disorder can occur with any type of Chiari malformation, but is most commonly associated with Type II.

Spina bifida is neural tube defect in which there is incomplete closing of the backbone and membranes around the spinal cord. In babies who are diagnosed with spina bifida, the bones around the spinal cord do not form properly, causing defects in the lower spine. While most children with this birth defect have such a mild form that they have no neurological problems, individuals with Type II Chiari malformation usually have a myelomeningocele, and a baby’s spinal cord remains open in one area of the back and lower spine.  he membranes and spinal cord protrude through the opening in the spine, creating a sac on the baby’s back. This can cause a number of neurological impairments such as muscle weakness, paralysis, and scoliosis.

Syringomyelia is a disorder in which a CSF-filled tubular cyst, or syrinx, forms within the spinal cord’s central canal.  The growing syrinx destroys the center of the spinal cord, resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.  Other symptoms may include a loss of the ability to feel extremes of hot or cold, especially in the hands.  Some individuals also have severe arm and neck pain.

Tethered cord syndrome occurs when a child’s spinal cord abnormally attaches to the tissues around the bottom of the spine. This means the spinal cord cannot move freely within the spinal canal. As a child grows, the disorder worsens, and can result in permanent damage to the nerves that control the muscles in the lower body and legs.  Children who have a myelomeningocele have an increased risk of developing a tethered cord later in life.

Spinal curvature is common among individuals with syringomyelia or CM Type I.  The spine either may bend to the left or right (scoliosis) or may bend forward (kyphosis).

Additional Chiari Malformation Resources:

American Syringomyelia and Chiari Alliance Project – Non-profit organization dedicated to research and support

Chiari and Syringomyelia Foundation – Non-profit group committed to finding a cure for Chiari malformations, syringomyelia and other cerebrospinal fluid disorders

Canadian Chiari Association –  a non profit registered charity organization whose goals are to spread awareness of this condition and to help mobilize the medical community in the fight against chiari.

Last audited 7/2018