When my husband and I felt God’s calling to adopt a child, we
immediately dreamed of having a child that would come with a few small
problems, but with the tons of TLC that we could shower upon them, they would
grow up to be a pretty normal/average child. Was I being
unrealistic? Don’t most people dream that way? I mean, surely you
have heard and read many beautiful stories where orphaned children came from
“hard places” and were rescued by loving families who had adopted them and
turned their lives from rags to riches? I have!
However, God had a
different dream for us…...it wasn’t a bad dream ……just a different kind of
dream; one that’s surprisingly becoming an amazing dream. A dream that’s
helping me to see His children from a different perspective…..through His eyes!
Our dream began by God
choosing us to adopt, love, and care for three beautiful children, all with
different “special needs”. Special Needs meaning, any child who might
need extra help because of a medical, physical, emotional/behavioral, or
learning problem. These kids have special needs because they might need
medicine, therapy, or extra help in school — stuff other kids don't typically
need. And you might be able to spot a few kids with special needs, but
you probably don't notice all of them. Many times a kid could have a
problem that isn't noticeable at all, unless you know the person well.
That’s the way my children’s special needs are; not really noticeable to
others, but they are there, they are real, and they are not always easy.
In all honesty, when God
chose us to adopt our children knowing they had special needs, I was first
faced with mixed emotions. Really,
God?? I’m older, and I don’t think
I have the time or ability to help these children. I often doubted that I
was up to the task and worried about each of their futures. Respectfully
speaking, when children come with special needs, the changes in your life and
expectations create chaos. Thankfully, I’ve gradually learned to trust
and believe God more, and to take one day at a time, waiting on His direction
and answers. I’m really trying to Trust Him to create a stable and secure
environment for our children.
We first to adopted
two boys. They were half brothers, whom I will call Brave heart and Cuddle-Bug.
Brave heart was an adorable 22 month old, with a happy demeanor and good
sleeping habit. He took two to three hour naps twice a day and slept 12
solid hours at night. Amazing, huh? However, he could hardly speak and of the
five words that he tried to say, they were unrecognizable. His brother
Cuddle-Bug was 9 mo of age, and was just as happy as Brave heart and slept well
too, unless you tried to hold him. You might be asking yourself, why
would holding him change all that? Well, he struggled with Reactive Attachment
Disorder (RAD) from all the physical and emotional neglect. He would not
let us hold or hug him without freaking out. Giving him a bottle, reading him a
book, or giving him a breathing treatment was very difficult. There were many
fits of struggling, crying and screaming. It caused me to feel rejected and
helpless, once again, questioning my ability to care for these boys.
But God kept saying “Yes you can, because I am with you.”
After a couple of years,
Brave heart had more special needs surface. As a matter of fact, in the last three years
he has been diagnosed with Attention Deficit Disorder (ADD), Dyslexia, Auditory
Processing Disorder (APD), and Speech and Language Disorders. However,
his IQ test, which has been given to him twice, at age 3 and again at 8,
revealed that his IQ was too high to qualify him for special services.
With these Special Needs, I often cried out to God for help…..What
now...how do I help him??
Cuddle-Bug, through
patience, love, and encouragement, became very close to us, allowing us to hold
him all the time...which is why I call him Cuddle-Bug. He loves to snuggle next
to us on the couch and can curl his body up into a tiny ball and fit nicely in
our arms. Cuddle-Bug is highly intelligent according to the many test given
to him, however, he did inherit from his biological mother severe Attention
Deficit Hyperactivity Disorder (ADHD). So bad in fact, that several times at
the doctor’s office, his doctor would get in his face and say, “I want you
sitting down right here and not moving again!” And then the doctor would look
at me and quietly whisper, “I don’t know how you do it….God bless your soul!” At four years of age, Cuddle-Bug was put on medicine,
which has helped him tremendously, and has been our (and his teacher’s) saving
grace.
With our hands full, we
knew we were done adopting. Or so we thought. Like I said earlier, God had a different idea. Shortly after we had settled in to a
routine, He brought into our lives, our precious Sweetpea. She came to us at
age 8 and with different needs. We were Sweetpea’s second adopted family.
Her diagnosis’ were too hard on her first adoptive family, and their
decision to give her up magnified some of her problems. Our Sweetpea wouldn’t
talk to hardly anyone and if she did, she wouldn’t give them eye contact: she would instead
look at the floor and speak only with a whisper. She had accidents in her
pants, she couldn’t sleep many nights, wandering around the house-while
everyone else slept (we now have video monitors in all the kids rooms). She
horded everything (especially food), her grades were failing, she threw fits
like a two year old when life didn’t go the way she wanted, and she looked sad
all the time. We worked hard on this baby….we cuddled her a lot, and when she
did wrong I always had to say to her, “I’m disappointed in what you did, but I
still love you and you are NOT going anywhere!” I fixed her up every day so she
would feel good about herself, and one of the greatest therapies we did with
her was role playing. Role playing helped her see how she looked to
others, plus it showed her how to act appropriately, and it encouraged her to change
her behavior. We also invested in her life at school, church, and put her
in extra-curricular activities to build her self esteem.
She has made a 180
degree turn and truly attached herself to us (especially me). Sweetpea’s grades
improved to mostly A’s and a few B’s in school, and she now looks people in the
eyes when spoken to and even answers them. Although I’m so proud of her
accomplishments, I know we still have a long way to go. I realize the way
she came to be ours sounds extremely rough, but obviously God wanted us to be
her parents, and because of our obedience, she has done a lot better than
expected. Sweetpea’s diagnosis consist of Attention Deficit Disorder,
Reactive Attachment Disorder, Anxiety Disorder and Post-traumatic Stress
Disorder.
Fast forward to now….here
we are raising three children (now ages 11, 9, and 8) with different special
needs. I always want to fix their problems, but I also know their conditions
require more than my typical parental first aide. It’s more than a
band-aide to cover their boo-boos, or a kiss and a reassuring hug to make it
all better. Our children need me to be their advocate. The person
they can continually count on to speak on their behalf because they lack the
ability to speak for themselves. My duties are out of the ordinary,
longer, more complex and filled with unexpected challenges. So, you might be
wondering, how do you do that? And how can I become an advocate for my child?
First, start each day
asking God for His guidance and direction. Seek basic understanding of your
child’s condition by either the internet, other people with similar cases, and
literature. You have to equip yourself to become the calm, confident, and
informed voice your child with special needs requires. There is so much out
there that it can be overwhelming. That’s why it’s a great idea to seek God
first, because He will (just as He has continually done for me) drop
websites, books, and people right into your lap, showing you exactly what you
need.
Second, a very important
tool that I always use for each of my children is a notebook/binder. I keep
track of behaviors, doctors appointments, personality quirks, likes and
dislikes, a list of evident symptoms, a list of professionals seen, and copies
of their findings or diagnosis, copies of all test and their results, and
copies of all educational papers-Test, Reviews, IEP’s (Individual Education
Plan).
Third, it’s important
that you communicate well with professionals. As you advocate for them,
maintain the right, positive and friendly attitude. Pay attention to how you
look and what you say so that you sound like you’ve done your homework, showing
them that you are serious about your child’s care so you can help them. I’ve
found that the more I’ve treated the professional as a person and with respect, the
better care my child gets.
A resource that helped
me significantly when I was doubting, frustrated, or just feeling hopeless, was
“Different Dream Parenting”. In Jolene Philo’s book, she mentions that
there are Traps that God wants us to Avoid, when raising special needs
children. By doing so, we will pass a healthy mind-set on to our kids. These
traps to avoid are:
1. Defining a child by a disease or condition. If you
put the condition or disease first or mention it exclusively (for example, saying 'I have a son. He has autism' instead of saying 'I have an autistic son'), you’re allowing
it to define your child. That’s not healthy.
2. Defining yourself exclusively as a caregiver. Allowing
that role to define you is unhealthy.
3. Over protecting a child. You have to gradually
release your child while you’re still available to give advice and help problem
solve.
4. Dwelling on what might have been. Having a tunnel
vision won’t allow you to enjoy the wonderful person you child is now.
Jolene also mentions Healthy mind-sets you
need to Have or Develop:
1.
Take care of yourself. Try to carve out time to get away and
relax.
A good
blog on self-care and stress management tips is at
2. Teach your child how to cope. The rest of the
world won’t change for you. So you have to cope with the world.
3. Keep in mind What’s Best for my Child. When making
decisions, base them on what’s best for your child. Only you can make the right
decision, because you know your child better than anyone.
4. Collect Appreciative People. Surround yourself and
your children with people who appreciate who they are and who share similar
interest. That acceptance creates a support group for your entire family.
Again, this amazing book is called “Different
Dream Parenting”- A practical guide to raising a child with special needs, by
Jolene Philo.
I highly recommend this book because she is so
wise and knowledgeable in offering spiritual as well as practical help to
anyone involved with children having special needs. This book brings you
advice from professionals, provides information about national organizations
and resources, and gives tips on searching for state and local resources. She
has parents of kids with special needs mentioned throughout the book.
Different Dream Parenting contains six sections: Diagnosis, Hospital
Life, Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and
Raising a Survivor. Each section is divided into four chapters. Three chapters
address practical issues. The last chapter in each section addresses spiritual
concerns. Each chapter ends with multiple resources. Plus in the
back of the book are Appendix that are amazing. Appendix A: Prayer
Guides (30 Prayers of Dependence, 30 Prayers for Hospital Stay, 30 Ways to Pray
for your Family, 30 Prayers for Educators and Therapists, 30 Prayers for
Grieving Families, 30 Scriptures to Pray for your Children, and 30 Ways to Pray
for Your Child’s Character) Appendix B: God Speaks through His Word
Appendix C: A Chart Appendix D: In-Home Nursing Care
and Interview Questions.
Finally, raising
children with special needs isn’t easy. As a matter of fact it’s very difficult at
times, but the blessings still far outweigh the hardships. And personally, we ARE
“Finding Joy in our Journey". I want to leave you with this: Encourage
your children to bravely be who they are. A famous quote from Dr. Seuss
goes like this, “Be who you are and say
what you feel, because those who mind don’t matter, and those who matter, don’t
mind.”
150 Million Orphans minus three,
Melodie
General Resources: Special
Needs Blogs:
