Tag: special needs

Finding Resources for Your Child with Learning Differences

We sat down nervously across the table from her, wondering just exactly what was recorded about our daughter in the file she had opened before her. Before beginning she paused, peered over her glasses at me and said,

“It must be exhausting trying to teach this child.”

The words startled me, and at the same time I felt tears gather in my eyes and an intense wave of relief flood through my body.

It wasn’t just me!

I wasn’t crazy!

The daily struggles were real and measureable and diagnosable.

Every special needs parent knows this intense feeling of relief to sit with a professional and have them validate all the layers of complexity you walk through on a daily basis.

While there is no easy formula or three step plan for finding the right educational route for a child with learning differences, I do feel like I’ve learned a few things along the way during the past 7 years of parenting children with exceptional learning styles and challenges. Maybe these tips will help you, too.

  1. Trust your instincts. Ultimately, you know your child better than anybody else, and that’s important. If you feel like something is out of sync, you are probably right.
  2. Think outside the box. One of the first things you need to do is start viewing your child’s learning differences as just that…learning differences. This means they learn differently, not more than or less than their peers. It means that their brains process things differently than others and may need things presented to them in unique ways. Don’t try to fit them inside the mold of average. Be a student of your child’s unique, inquisitive, wonderfully complex mind. Study the way they see the world. Take the time to listen to their ideas, the way they describe their experiences and the things that interest them. Once you understand the way your child thinks, feels and experiences the world around them, you will be much better prepared to brainstorm what might assist them in learning and growing. Be warned, however, that you just may fall in love with the way your child views the world and decide you don’t want to fit them into a typical environment. This may prompt you to lead your child on an educational journey that looks very different than what you had previously pictured as success. For example, you may decide homeschooling, outdoor learning programs, a special needs classroom, online education or part time schooling is a better fit for your child than the typical structure.
  3. Do the research. While labels are not always necessary, I have found it is helpful to know exactly what it is that you are dealing with and sharing that information with others so that they can access the appropriate resources, funding, etc that may be eligible for your child. The label is less about diagnosing and more about finding an education path for your child. Don’t be afraid of the labels. They can help. Know the information needed well enough that you can summarize, elaborate and present it in multiple forms to anyone who needs to hear it and understand it. Be the expert on your child.
  4. Find an ally. Whether it’s a teacher, principal, pediatrician, educational assistant, therapist, social worker or special education coordinator, it’s helpful to find a professional who understands your child and is willing to advocate alongside you and hear your concerns. This person can often guide you in the right direction when it comes to finding solutions as well.
  5. Listen. Ask for input from your child’s current and past educators. Give them space to express their concerns, share the observations they have made and the ways they have attempted to intervene. Make sure you know what is working and what is not working, what alternatives have been tried or implemented and why. This is the part where you listen, not criticize or offer your ideas of solutions. Be humble enough to sit and learn without putting up your defenses.
  6. Be willing to give it a try. Most likely after you follow through on number 5, you are going to have some ideas and opinions shared with you that don’t quite match your own expectations or observations. Unless you absolutely know an idea is not going to work and have proof of that, be willing to give things a fair shot. It’s just as important to allow the system to attempt interventions as it is to find that long term plan. Each intervention is building the case for your child’s unique needs, strengths and weaknesses. They will be documented, observed and tweaked in accordance with the level of success they bring. This means finding help for your child involves a lot of patience, trial and error and frustration for both you, your child and their educators.
  7. Honesty. Be willing to be transparent about your concerns and goals. The more honest you are, the more likely it will be that teachers will find you approachable and caring. Admit when you don’t know what to do or where to find answers. Let them know when something just doesn’t feel right. Most of your child’s teachers are parents themselves, and you may be surprised at the journeys they themselves have walked with their own children or past students.
  8. Take ownership and be the advocate. I’d like to be able to tell you that you will find that one person who will do all this for you, or that you can do these things once and then it will be smooth sailing from there on out but that’s just not true. Ultimately, you are your child’s sole advocate and you need to own that and be ready to settle in for the long haul. There will be seasons where the intensity will lessen and you may be able to sit back and relax a bit, having found your child that sweet spot in their education journey where they are thriving or being carefully monitored by a gifted educator. But most of the time, you are the one who will need to monitor the interventions, strategies and progress of your child. Accepting that this is your position will give you confidence and courage to stay involved and positive on your child’s educational journey. It will help you to make the best decisions possible for your child, even if that means going against the advice of the professionals around you. They will come and go over the years, but you are the constant in your child’s life. Take that position with authority and think in perspective of that.
  9. Grieve. If all this just looks overwhelming and completely unattainable, maybe you need to take the time to just grieve. Grieve the loss of your expectations, hopes, dreams and misconceptions. Grieve the loss of innocence your child may have encountered as they struggled to fit in, be heard and seen. Grieve that life may not look the way you had planned. This does not make you a bad mom. In fact, this may be the key to really unlocking success for your child. No matter how hard you work to ensure your child is seen, heard, understood and thriving…children who do not fall into the category of “average” will at some point find themselves in a situation where their differences set them apart and make things more challenging. This can be painful and isolating, and if your child thinks you don’t understand their challenges or differences, they will not see you as their support when those difficulties arise. Your child wants to know that you are equipped both mentally and emotionally to understand their unique hard-wiring. So be real with them. Don’t sugarcoat the truth about their differences and don’t make all your decisions without their input. Let them know you understand that they are different and that you recognize how hard that is at times.
  10. Celebrate your child’s unique abilities and characteristics. Once you have grieved what might have been and acknowledged the ways that your child struggles, intentionally move on and start looking for the gifts, talents and characteristics they possess. Ironically, our strengths are usually merely the flip side of our weaknesses. For example, your child may struggle with impulsivity but it’s likely that same child is brave, curious and uninhibited by worry or fear. Perhaps your child struggles socially but is very accepting of those who cannot relate in typical ways. Take time to intentionally set aside the standard ways we evaluate success in children and look past those to the strengths your child possesses that may not show up on a report card or skills evaluation. Are they gentle, gifted with animals, intuitive to others’ needs, creative, athletic, resilient, dramatic? Your child may not end up at an Ivy League school but perhaps they will make an indelible impression on the lives around them through the unique gifts and talents they are equipped with. Let them know you see these abilities they possess and that they are just as important as literacy and numeracy skills. Create space for them to exercise their talents and encourage them to pursue their interests. Every child wants to be seen, delighted in and loved for who they are, aside from their abilities. This applies to your child, no matter what struggles they may face academically. So make this your number one priority. Before the daily reading, flashcards, fine motor exercises, speech therapy or phys-coeducational evaluations take the time to stop and just love the child in front of you. Their quirks, their flaws, their strengths, their beautiful individuality.

~AF

FB Questions Answered!

A few weeks ago I wrote a short request on facebook asking people to share their questions regarding adoption.  Here are the questions and the best answers I could come up with 🙂

“In places like China, for example, I’ve heard that it is customary to offer expensive gifts, etc., not to mention the plane fare. Where might a middle class family who don’t have plane fare, etc. be able to inquire?”

So unfortunately I have no firsthand experience with this one, but I will share the best I’ve been able to acquire from my research!

So from what I’ve been able to understand, in many cases these “gifts” are items being requested by orphanage directors/workers when a child is being adopted.  Though this may seem incredibly manipulative, from what I’ve read in many cases it is actually the agency you are working with here in North America that is requesting you to bring these gifts because it is culturally appropriate to offer gifts in situations such as these.  I also found that in many cases these gifts are really not expensive ($10-25 each) and are actually donations for the children left behind in the orphanage when you return home with your child.  The $30-50 thousand dollars you spend on an international adoption is largely spent on lawyer fees both in your country and the child’s, travel costs, adoption agency fees, and government documents you need to acquire for your child.  The orphanage itself from which your child is coming will receive very little, if any, of this money.  These “gifts” are their way of trying to improve the conditions of the orphanage.  Again, this is not first hand experience and my information may not be reliable but that’s what I found.  To avoid being taken advantage of financially in an international adoption the overwhelming advice I read was to work with a reputable agency, to be organized and to choose a country that has signed the Hague Convention.

As far as being able to afford an international adoption, there are many things a middle class family can do:

  1. Apply for adoption grants
  2. Fundraise for your adoption
  3. Live on less
  4. Sell stuff
  5. Get a loan

I believe that where there is a will there is a way 🙂

Read my blog post on affording adoption here.

How does a family go about discretely investigating about whether or not the child has physical/neurological difficulties? There have been many reports of adoptive parents finding that the babies have difficulties that they weren’t aware of. While a couple would need to accept these things in their own birth child, there are many who adopt, not wanting to sign up for that.

To be honest, I think this was probably more common longer ago.  Here in Canada, I do not think you need to be concerned at all about this as any public or private agency will share as much information as possible with you if you are serious about adopting a specific child.  They are not trying to con you into adopting a child.  On the contrary, they are working for the best interests of the child, not you!  Once you express serious interest in a child, you will be given the opportunity to view their entire file including any medical history, diagnoses, etc.  It will be your job to do the research on whatever you find and be sure you are equipped and informed.

However, you must remember that there are many unknowns related to children who have suffered trauma, abuse and/or neglect.  Short of a magic genie there is no way for you to predict the full capabilities of a child upon adoption any more than a biological child’s future needs at birth.

I would say:

Ask as many questions as you can.

Consult with professionals regarding the information you do receive.

Do your research, but at the same time be prepared that life has a way of throwing curve balls at you and it doesn’t mean someone deliberately mislead you.

If you’re referring to international adoption I would certainly think there are many more risks of this occurring.  I know most adoption agencies encourage you to arrange for a medical examination to take place in the child’s current country and then again immediately upon arrival to Canada.  Many children available for adoption internationally have been abandoned at an orphanage with very little information, so there is not necessarily any way you can know what the true extent of their limitations are.  It’s important to be prepared for things to be much worse than you expect…but it’s also important to keep in mind that a secure and loving environment, with great access to medical care and services is the ideal place for a child to reach his or her fullest potential!

As far as not wanting to ‘sign up for this’…it’s a phrase that would be worth considering deeply.  If you are not prepared to face some unknowns adoption may not be for you.  These kids need people who are willing to stick with them no matter what.

 

“I know a couple who adopted a young girl after fostering for a long time. Later, there was such conflict with their biological children, that they arrived at the difficult decision of letting the girl go again. How does the couple with the heartache in that decision reconcile that issue within themselves. I’m sure they still ache.”

This is a tough one for me.  Everybody has a story about an adoption that went wrong in some way or other.  I feel for this family deeply and I’m sure that they must have walked through some very dark and desperate times to reach this decision.  I have never had this experience, and to be honest it goes against everything I believe.

At the same time, I am not so naive as to think that the intense struggles involved in foster care and adoption could not lead to this.  As much as I don’t like it, there are children who have been wounded to the point where they cannot function well in a family environment.  Love does not fix everything.  There are times when a child needs supports that a home environment will not be able to provide.  Many adoptive parents have lived through the agony of having to choose to send their child to residential treatment centres, etc.  This is hard stuff.

I would say, however…that I feel like there should always be an option that still includes the preservation of the vows you made to your child upon their adoption into your family.  I cannot ever in my mind conceive a time when it would be ok to abdicate my biological child’s place as my son or daughter.  Any parent who abandons their biological child or rejects their place in the family is labelled as a monster.  I struggle to understand why a child you’ve chosen to adopt would be any different.  The day you adopt a child you legally become their parent.  They receive a new birth certificate, with your name on it.  They take on your last name.  You vow before a judge to care for them and love them forever.  The minute you sign those documents in the court room, the time to back out of an adoption is past.  While it may be necessary to relinquish a child to live outside of your home for a while…or even permanently…I would be lying if I said I thought there was ever an ok time to nullify an adoption.  Especially due to sibling rivalry.  I’m guessing the thought of “letting go” of the biological children never crossed their minds.  Two wrongs will not make a right.  They may reject you, they may push you away, they may leave your life in a pile of rubble and desolation…but they desperately need you to follow through on the promise that nobody else did; that they belong to you and nothing can ever change that.  Whether they are under your roof, behind bars, in a respite home or enrolled in a treatment centre…they are yours and you are theirs.  That’s what family means.

 

Do you feel differently about your biological child than your adopted ones?

Yes, I do.  I ADORE all 3 of my children but I absolutely feel differently about them in some ways.  I worry less about my biological son’s future, and my relationship with him is so easy.  Our attachment is secure and unexplainable, with no interruptions or unknowns.  My daughters and I have walked some hard and dark places together, and I have fought harder for them than I knew was possible.  There are days my heart wants to explode with pride as I watch them conquer their world.  There are other days I feel a lot of fear and pain as I watch them.  I have had to earn their trust, and we still walk on eggshells around some issues.  It is a more intentional love, and there are days the foundation appears to be crumbling in places I didn’t know exist.  I am constantly on alert with them.  We take nothing for granted.  But we are a family.  Forever.  And I would choose this again and again and again.  My 3 children came to me in very different ways, but the 3 of them make up my heart and together they are siblings with a bond that is unmistakably family!

 

How long does the adoption process take? 

Unfortunately the adoption process is unpredictable as there are many variables.  There are 3 different types of adoption, first of all.  International, domestic and foster care.  For all three you will need to start with a homestudy assessment.  This process usually takes approximately 6  months to complete.  After your homestudy is complete it depends largely on how motivated you are to adopt and what type of child you plan to adopt.  If you are adopting internationally or through foster care and are interested in adopting children with special needs, older children or a sibling group your adoption will usually go fairly quickly from this point…especially if you are being proactive in searching for your children.  If, however, you are waiting for a baby or child with very limited special needs you will wait longer as children rarely make it through being abandoned, abused, neglected or orphaned without some major trauma.  If you are adopting domestically and being matched with a birth mother there is no guarantee when or if you will be matched but most families statistically are matched within a year.  You can speed up the adoption process by being prompt in completing your paperwork, being open to special needs children and being proactive alongside your adoption worker.  However…God has a way of making things happen in His timing and in His ways, and sometime that means waiting.  At the end of the day it is all up to Him and trusting His timing will help bring peace in the waiting periods and hope in what seems to be endless holdups.  He is bigger than any obstacle that may stand in the way.

 

What are some things your home requires to pass the home inspection?

Some things you will need to complete a homestudy in Ontario are:

  • Criminal Record Checks
  • Fire Inspection
  • Medical Certificate completed by family physician
  • References
  • Financial Statement form
  • Proof of Home and Auto Insurance
  • MTO Driver’s Abstract
  • Car Seat Inspections
  • Notice of Assessment
  • Complete PRIDE training
  • Meet with your social worker at least 3-5 times

Many people find the homestudy process to be quite invasive and intimidating, which it certainly can be.  Having someone come in and inspect every aspect of your life, home and family is a little disconcerting.  However, this is an essential part of being sure you are a safe, consistent and loving home for a child to grow up in.  Try to remember that everything you are being asked to do is for the sake of the many children out there waiting for a family.  Raising children with trauma backgrounds is not always easy and it’s important to be sure you are prepared for this challenge.  The homestudy is designed to help both you and the adoption agency you are working with to determine whether your family is prepared for adoption.

AF

 

Finding the Right Child for You

You’ve completed your homestudy.

You’ve done all the courses.

You’ve made room in your home, your budget and your heart for a child.

Now, all that’s left to do is to find that child.

In Canada alone there are over 30 000 children available right now for adoption, and millions of orphans all over the world.  So how exactly will you figure out which one is meant to be yours?

It might be a photolisting page online, a specific profile in your hands from your social worker, a referral package in the mail, or dozens of profiles set up at an adoption exchange event.

How do I know which child is mine?

The doubts and questions invade your mind at this point and none of the answers are easy.

What if this causes our family to fall apart?

What if my children can’t cope with the attention this child needs?

What if we can’t afford the services we may need?

What if I can’t handle that?

What if I just can’t love this child?

What if I regret this?

It’s very important to honestly evaluate the skills and emotions you and your family possess.  Just because these children need a home and a family doesn’t necessarily mean you are the best home or family for them.

But in this post I’d like to challenge you to think a little deeper.

I want you to glance back up at that list and notice the common denominator in each of those questions.  If you look closely, you’ll see that they all express the feelings or worries of me, our, I and we.  In a nutshell…it’s a rather selfish approach.

Unfortunately, many of us enter adoption with this attitude.  We are seeking some sort of fulfillment for ourselves.  Emotionally, physically, and even spiritually.  We are looking for a child to fill a need we see in our own hearts or lives.

Maybe you’ve struggled with years of infertility and all you want is a child to love and be loved by.  You want someone to call your own.

Maybe you’ve been moved by the passion of others and you’re drawn to the drama of adoption. You want to be a Savior to a child and you envision a happily ever after life where gratitude and joy envelopes every moment of every day.

Maybe you’ve experienced the pain and joys of foster care or adoption personally and you want to heal that wounded place inside of you by reaching out to a hurting child.

Inevitably, most of us will come to foster care and adoption with some kind of agenda that is based on ourselves.

This needs to change before we can even begin to look at a child’s profile objectively and compassionately.  We need to look honestly at our motivations, grieve the losses we may have experienced and pray diligently for God to bring healing to the broken parts of our lives.  Once we can lay aside our own needs, we will be much better prepared to start considering the needs of a child who may enter our family.

There are a few myths I’d like to turn upside down in regards to choosing a child to pursue.

MYTH #1 

I NEED TO FIND THE CHILD THAT’S RIGHT FOR ME.

While I believe God can and will lead you to the child that is destined to become a part of your family, it’s important to get rid of the me in this question.  Instead of focusing on what we believe we can handle or what we would prefer…flip this question around.

What kind of family does this child…or any child,  need?

If that doesn’t match your skill set or preference then…

Can we become the right family for this child?

What skills or resources do I lack in order to be the family this child needs?  What can I do to develop or access those skills and resources?

It completely changes the focus…from me to the child.  No longer am I on a hunt for the child I desire, but instead I am on a journey of change to become the kind of parent or family that a child needs.  This places value on the children we are seeing and opens our hearts to God in a way that places us as clay to mold in his hands.  With this kind of attitude, God can speak clearly to your heart about the individual children you may be considering.

MYTH #2

I CAN’T CHANGE WHO I AM, WHAT I FEAR OR WHAT I HAVE TO OFFER.

“I have never been drawn to that kind of special need.”

“I don’t enjoy that kind of thing.”

“I don’t feel like I could handle that!”

“We don’t have the right kind of home/family/community/church, etc to accommodate that.”

“I don’t know anything about that.”

I think I have probably said all of these things at some point in our adoption and foster care journey.  It’s not hard for us to see what our own needs, desires, comfort levels, etc are.  In fact, it comes quite naturally to consider my own needs above anyone else.  But wait a minute.

Is that what the Bible teaches?

“Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others.”  Philippians 2:3-4

On the contrary, the Bible teaches radical love.  A love that puts others before ourselves and our ambitions.

The Bible also teaches radical transformation and power when we are in Christ.  Through Him, all things are possible!  This means I need to spend time in meditation and prayer, analyzing the things that are truly holding me back.  It means I need to get my heart in the place where I can truly say, “God what do you want me to do here?”  I want to be that kind of person, and I want to teach my children how to live that kind of life.  A life that is spent serving others.  A life that is constantly pouring out of resources only He can fill.  But as long as I stay only within the lines of what I think I can handle, what I feel is best, what I am comfortable with…that will not happen.  Think about this when you are looking at a child’s profile.

There is also a very practical element that comes in here.  When I decide that others’ needs truly come before my own, I may be amazed what I can do to change my life’s circumstances, my personal skill set, etc.  It is amazing what can be changed when I start to believe that I truly want it!  Maybe it’s time to honestly take a look at what you could do to benefit a child who is waiting for a family.  How could you change your life to best meet their needs instead of worrying how they will fit into your already busy, full life?  What changes do you need to make to your time, your budget, your home and your family?

Do you need to cut out some extracurricular activities or entertainment that is taking up time and money?

Do you need to move to a new neighbourhood or buy a larger home?

Do you need to clean out your spare bedroom or junk closet to create space in your home?

Do you need to volunteer somewhere or take some courses to gain a skill set you are missing?

Do you need to do some research on a specific special need?

Do you need to pray for a heart of compassion for a certain group of people, social issue or special need?

MYTH #3

I CAN’T CHOOSE WHO I WILL LOVE.

So in all this choosing…where is the romance?

Where is the moment where I fall in love with my child or my heart skips a beat as I stare at the profile of a beautiful child?

What about all the stories of those people who just ‘knew’ from the moment they laid eyes on their child that this was the ‘one’ for them?

“I want that!”

Yes.

I know.

Me too.

But the reality is…that doesn’t always happen.

Again, we live in a world and culture where we are so bombarded with selfish messages we don’t even realize how much they’ve permeated our worldview.

You will fall in love with your child…but it probably won’t be right away and the ‘falling in love’ is a mere feeling.

Real love, constant love, forever love…that is made up of much more than emotion.  That is made up of choices.  Daily choices.

You can choose who you will love.

You can choose to love.

The feelings will catch up when you put what you know to be true and right into action.

Just like a marriage, adoption will have it’s romance, it’s drama, it’s cloud 9.  But it will also have it’s struggles, pain and irritations.

Love is a choice.

MYTH #4

IF IT’S RIGHT I WILL HAVE PEACE ABOUT IT.

“I just don’t feel peace about it.”

While I completely understand where this comes from…I think at times we as Christians sling this word ‘peace’ around without any idea what we are really saying.  True peace does not depend on our circumstances and it is not something we can acquire by following a list of steps.  Peace is a gift from God that has given to us when we choose to place ourselves, including all our worries, doubts and fears, into His sovereign hand.  

Peace comes after true heart surrender and steps of faith.

What’s important to distinguish here is that what is RIGHT will not always result in a feeling of peace, contentment, or comfort.  In fact…often the right thing is not easy at all and may put you in a place of struggle emotionally and spiritually.  The Bible promises us that if we follow the example of Jesus our lives will not be easy, comfortable or ‘peaceful’ in the sense that we often think of it.  Doing what is right often requires much sacrifice!  

Just because something is hard does not mean it is not right.    

If we are to use this word ‘peace’ to govern our decision making we must first recognize the true meaning and origin of this peace.

Instead of using our emotions and a sense of ‘rightness’ as our guide, we must go to the scriptures.  I believe as Christians we spend a lot of time praying and asking for God’s guidance in areas that He has already given us more than adequate insight into through the Word.

Go back to the Bible.

What does it teach about orphans, the vulnerable and the marginalized?

What part are we as believers supposed to play, and at what cost?

If you are currently in the middle of wading through the list of special needs, trying to check yes or no or maybe and wondering what your future holds, know that I have been there and understand how hard it is!  You are the only one who can know what God is asking of you, which makes this a very personal journey.  I hope this blog has been encouraging to you, most of all.

My intention is not to give anyone the impression that this decision should be made rashly or lightly.  But I hope I’ve also challenged those of you who may have wrongly put yourself in the middle of this decision.

I say this as the mother of two girls who spent spent over two years waiting for an adoptive home and were labelled as ‘hard to place’ children.  Many families looked at their adoption profiles and eventually backed out, feeling they were ‘too much’ or ‘too old’ or ‘too scary.’

I say this as an adoption advocate who has seen the faces of hundreds of children waiting for a family to see beyond the pain, brokenness and despair they carry with them each day.

I say this as a discouraged Jesus follower who has had too many conversations with fellow Believers that are all about the adults, all about what makes sense, all about what makes us feel normal or comfortable or happy.

When people ask about our adoption process, it’s hard to know what to say.  Do I talk about how it took a year to complete our homestudy and then almost another full year before placement?  Do I talk about all the paperwork, the classes, the search for the child who would be ours?

See…usually what they want to hear is about me…

but what I really want to say

is that it started long before I walked into the CAS office.

Our adoption story is not just about me and my husband’s journey.

It’s really about my girls.

It’s about the weeks my youngest daughter spent in the hospital as an infant, alone and struggling to survive.  It’s about the constant movement she experienced from home, to home, to home, to home.  It’s about the seven long years my older daughter spent in foster care…not knowing what her future would hold or if she’d ever see her birth family again.  It’s about the tearing apart of families that loved each other.  It’s about the struggle to trust, to cope, to thrive.

 It’s about God bringing four people together and making them a family.

 Not built on biology, but on love.

AF

 

 

 

 

 

 

 

 

10 Things You Should Know About FASD

Fetal Alcohol Spectrum Disorder (FASD).

Fetal Alcohol Syndrome (FAS).

Alcohol Related Neurological Disorders (ARND).

Alcohol Related Birth Defects (ARBD).

It’s growing,

spreading,

taking over our society.

An invisible epidemic;

Incurable.

Brain damage.

100 % preventable.

The emotions I feel as I write those words are deep.

Anger.

Pain.

Vulnerability.

Exhaustion.

As the parent of children with Fetal Alcohol Spectrum Disorder this is an issue that has affected me very personally and to be perfectly honest I am just in the very beginning stages of understanding and accepting the realities.

For those of you who may have never heard of Fetal Alcohol Spectrum Disorders (FASD) or are unfamiliar with the definition, here’s a brief explanation:

When a woman drinks alcohol while carrying an unborn child inside her womb, that child’s body and brain are exposed to a very damaging substance.

Alcohol is one of the most dangerous teratogens (substances that can be harmful to a developing fetus.)

Alcohol, unlike other food or drink consumed by a pregnant woman, passes directly from the mother’s blood stream through the placenta to the baby.

Alcohol in the bloodstream constricts the ability of the growing fetus to access oxygen and nutrients.  Therefore a baby exposed to alcohol prenatally will not be getting the oxygen and nutrients needed to continue developing at a healthy rate. 

This is made even worse if coupled with the carbon monoxide a fetus receives from cigarette smoke.  The baby does not have the ability to break down alcohol the way an adult can, so the blood alcohol levels will stay higher for a longer period of time than that of the mother’s.

This means the baby is being exposed to even greater amounts of alcohol for an even longer period of time than the mother. 

Alcohol causes cell death and sets in motion a wide variety of disruptions all over the body.  The most common affects are seen in the brain and nervous system.  Alcohol exposure can also leave behind toxic byproducts on the brain which linger and continue to cause damage.

A child who has been exposed to alcohol prenatally and demonstrates a significant number of effects physically or neurologically is diagnosed with Fetal Alcohol Spectrum Disorder.  This is an umbrella term that includes Fetal Alcohol Syndrome and Alcohol Related Neurological Disorders.  For the sake of clarity in this post I’ll just be using the term FASD when talking about any alcohol related disorder.

That, in a nutshell, is a description of the invisible epidemic that so many families and individuals are struggling with in our society.  Many of these families and individuals are found within adoption and foster care as alcohol use during pregnancy is so often coupled with alcoholism and drug use postpartum which leads to abuse and neglect.  Unfortunately trauma affects the brain in many of the same ways as alcohol and compounds the effects, giving the child a “double whammy.”

This is a huge topic and one I can’t even begin to cover in one post, but I’ve made a list of 10 things you should know about Fetal Alcohol Spectrum Disorder.  Please take the time to read this.  So many families are trudging through the trenches of raising a child with FASD and feeling so desperately alone.  It’s hard, it’s exhausting and it’s constant.  You can help by being aware of the realities and facts so you can be there to support them.

1) FASD is an invisible disability.  By this I mean much of the time you will not be able to see any distinguishing physical signs.  Some children will display a slight indication in facial features that most people would not be able to recognize but many have no physical indications at all.  Most of these kids look like regular kids with a little extra energy and discipline needed.  This, by far, is the most difficult part of having FASD or parenting a child with FASD.  Everyone around you will struggle to believe that your child truly has a neurological disorder that limits their abilities…and so will you!  A person with an FASD will most likely be incorrectly labelled and judged almost every day of their lives by those around them.  A parent will experience much frustration due to others not understanding their child’s very real disability simply because until you are intricately a part of that child’s world he or she will just appear to be a regular kid.  This is devastating to the person with FASD, however, because as much as we’d like to ignore their limitations, they are very real!  You can only function so long in an environment that does not meet your basic needs.  School, home and the workplace will all become places of failure if your disability is not understood and accommodated for.  Unfortunately most families living with the reality of FASD will still have some people in their lives who take the stance, “I can’t see it, so I won’t believe it exists.”

2) NO Amount of Alcohol is safe during pregnancy!  I cannot even begin to emphasize this enough!  Unfortunately there are still doctors who are uneducated regarding FASD and will tell you that small amounts of alcohol are not harmful to your baby.  They are wrong!  There is no proven ‘safe’ amount of alcohol.  This does not mean that every child exposed to a drop of alcohol will be affected by FASD, but it does mean that every child exposed to even a drop of alcohol is at risk for FASD.  The effect the alcohol has on the developing fetus depends on many things including timing of consumption, amount of alcohol consumed, development of the fetus and the genetics of both mother and baby.  Fraternal twins can be exposed to the exact same amount of alcohol at exactly the same time and still be affected differently because of their genetic makeup.  This makes it impossible for anyone to tell you a safe amount of alcohol for you and your unborn child.  No amount is safe!  This disability is 100% preventable!   

3) FASD is an incurable disability.  There is no “fix” for FASD.  Alcohol is physical damage done to the brain and nervous systems.  While the brain can learn new ways to compensate, the actual damage done will remain the same.  There will be connections missing for the entirety of the individual’s life.  There are medications that may help some children and adults dealing with FASD, mostly to manage the ADHD-like symptoms.  There is not, however, a magic pill for FASD.  There is no one medication that is going to target all the areas of weakness in a person with FASD.

4) FASD causes impairments in children.  Some of those impairments include mental retardation, learning disabilities, attention deficits, hyperactivity, problems with impulse control, language, memory and social skills.  These impairments make it very difficult for children to thrive in environments such as school.  A typical FASD child will probably: have trouble focusing on tasks, require sensory aids, need constant supervision, have trouble making and keeping friends, have a poor concept of time, find it hard to transition between activities, struggle with anxiety, have poor coordination and balance, find it difficult to work toward a goal, will not learn from their mistakes, have poor judgment, be jittery and hyperactive and display extreme mood swings.  Typical behavior also includes habitual lying, stealing and aggressive behavior towards others.  All these behaviors are rooted in neurological damage and need to be handled as such.      

5) FASD affects the way a child learns; it does not mean they cannot learn!  As soon as people realize that alcohol exposure does, in fact, result in physical, irreversible damage to the brain…their first thoughts are that therefore that child cannot learn.  This leaves a pretty bleak picture!  Children born with FASD’s can go on to be happy, healthy, successful adults…sometimes.  The goal is to reach their potential by discovering new ways for them to learn.  This takes a lot of hard work on the part of parents, teachers and the children themselves!  The world is not geared for FASD, and therefore they are at an acute disadvantage.  But don’t give up!  These children are smart, talented, funny, and social individuals!  Many of them will go on to do very well when given the right tools to accommodate their learning style.  They can become responsible, independent adults…but this isn’t always possible.  Every child is a unique case when it comes to FASD and so there is really no way to predict what the outcome will be.  Depending on the areas of the brain damaged by the alcohol exposure or to what degree, FASD individuals may need structure and supports to navigate their days for their entire lives.  Thankfully FASD is starting to become more recognized and therefore more and more resources and supports are available for families, children and adults affected by this disability.

6) FASD is a spectrum disorder.  This means that, just like Autism, children affected by alcohol exposure in the womb will present with symptoms all over the spectrum.  Every child is a unique case.  FASD has a wide variety of faces, making it even more difficult to assess.  A child may be very severely affected and present with many symptoms or a child may be only slightly affected and therefore portray only a few of the symptoms.  However, this does not mean the symptom displayed is any less severe or that somehow it can be “fixed” since the child does not seem to be severely affected!  Remember, this is physical damage done to the child’s brain!  Most children with FASD will display a similar set of symptoms varying in severity.

7) Children with FASD find it very hard to control their emotions and behaviour.  I know I mentioned this earlier, but I feel these two symptoms are worth going over again since they are so disruptive to daily living.  Many individuals with FASD would be able to do quite well in life if it weren’t for their lack of ability to control their emotions and behaviour.  Coupled with difficulty understanding consequences and poor judgment, this is a major obstacle!  Most children with FASD need constant supervision to ensure the physical safety of themselves and those around them.  They are often described as unpredictable, reactive or as one of my daughter’s teachers said, “She’s an opportunist!” 🙂  Unlike most children, these are not traits they will grow out of as they get older, though they may be less noticeable.  Structured environments, repetition and self regulation tools can help them learn to moderate their behaviors and set them up to succeed, but on their own they do not have the cognitive ability to accomplish this.

8) Children with FASD have strengths too!  Despite the challenges of FASD, many of these children are incredibly lovable, gifted and resilient.  They tend to be very social little people.  Though they may struggle with social boundaries they can often win over strangers with their affectionate, chatty nature.  Even though they can have quite drastic mood swings, they can quickly get over being hurt or angry.  One minute they will hate you, but the next they will love you.  My favourite is, “Mommy, I love you more than the sun!”  Besides being very social these children often have strong visual memories, rich fantasy lives, are very creative and have a strong sense of fairness.  They’re energetic and can handle lots of physical activity, making them active, fun kids to interact with!

9) Children and youth struggling with the realities of FASD are vulnerable.  Many, many of these children and youths will end up in trouble and charged with criminal offenses due to their lack of self-regulation skills and their tendency toward aggression and violence.  Without the ability to control their emotions and responses, they are extremely vulnerable in a society that doesn’t understand or accommodate their needs.  A high number of youths in our criminal justice system have FASD.  Unless they are backed up by professionals or advocating parents to explain their behaviors and beg allowances and accommodations they will be treated as any other person in our justice system.  Even though developmentally they are still a child, they will be treated as adults.  Even as children, FASD individuals are vulnerable.  Children with FASD often have poor social skills and need the protection of adults around them to keep them safe.  They have a very poor sense of judgment when it comes to other people and easily trust anyone who is nice towards them.  They will appear comfortable around even a total stranger if given positive attention.  They also love physical interaction and will seek it out of anyone who is willing to give it.  This makes it hard as a parent to keep children with FASD safe.  An important part of parenting a child with FASD is putting into place appropriate social boundaries.  This can be hard when the child continually receives positive attention from other well meaning adults when he or she crosses those social boundaries.  When children deal with attachment difficulties on top of FASD it emphasizes this and makes it even more complicated.           

10) Education is the key!  The answer to helping the many children and young adults with FASD is found in being aware of the realities and then advocating toward better environments for these individuals to not only cope but to thrive!  By building on strengths and creating a safety net around them, children and adults with FASD can lead happy and successful lives surrounded by people that love and care for them.  They are valuable, beautiful people who deserve the best we can offer them.  As one person put it, FASD is not one of the “designer labels” like autism that people have accepted and provided support for.  With such a direct, negative source it is not a fun disability to talk about, much less explain to children or adults.  It does, however, have just as severe ramifications and being quiet about it never helps.  FASD individuals deserve the dignity and respect we give any other person with a disability and they desperately need those around them to be understanding and supportive even when it gets ugly.  They are not, after all, at fault for their disability.

My prayer as a mother of children struggling with Fetal Alcohol Spectrum Disorder is that they will not only survive but that I will create an environment where they can thrive!

Every single day I want to make the choice to see the beauty of who they are despite their difficulties.  I am humbled to serve a God who can work with even the most broken of vessels and turn it into something intricate, unique and glorious!  Nothing can surprise Him, or travel beyond His ability to transform and remold.  After all, when it all fell apart He was already there.

“For you formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.  My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them.  How precious to me are your thoughts, O God!  How vast is the sum of them!  If I would count them they are more than the sand.  I awake, and I am still with you.”

Psalm 139:13-18 

I pray that God will give me the grace and courage to advocate for, offer grace toward and protect these beautiful souls he’s created in His image.

There is so much more good than bad…if only I choose to see.

“I’ll love you forever, I’ll like you for always.”

AF

 

 

 

 

 

 

 

 

%d bloggers like this: