Isabelle is undergoing some testing.
More testing, really.
Since arriving home in 2005, our sweet girl has endured more testing than, well… than any 6 year old should.
Isabelle’s special need was a minor heart defect. But her delays, of an unknown origin and of an unknown severity, have continued beyond what could be attributed to her initial special need or the effects of institutionalization.
And if we want to help bolster her strengths, and fill in the gaps where she has weaknesses, we need the testing.
Like it or not.
And I do. not. like. it.
In fact, I vigorously dislike it.
It is wearying.
It is heart wrenching.
Because, my girl is so much more than check boxes.
And numbers on a scale.
To sit, face to face, with a neurologist, a psychologist, a teacher or a therapist, and have them tell you where your child falls short?
Seriously, seriously sucks.
I have cried at every IEP meeting.
At every parent-teacher conference.
At pretty much everything pertaining to Isabelle and ‘testing’.
And it’s really not because Isabelle is delayed. I know she is. I know she might not ever even catch up. And, in my heart, I’m fairly certain I’ve come to terms with that.
But still, the tears. To have a child that struggles, to whom most ‘things’ do not come easily, is to have your heart forever raw.
Exposed.
When the news is bad? It simply hurts to hear her reduced to a bunch of words. A number on a scale. And that she is struggling to learn? Oh my. Honestly, it’s like daggers. Even though – every time – I think I am prepared to hear it, I cry.
And when the news is good? Well, how can I not cry tears of pure joy to know she is achieving new things? It is not possible see any accomplishment, big or small, without reflecting on her beginnings. Just makes me bawl like a big ol’ baby.
I think God pricked my heart a bit harder when He placed Isabelle into our family. He knew I would need to dig deeply to parent her well. I’d need to give her more of everything I have to give: love, energy, understanding, patience, acceptance, encouragement and protection. And to do that, He knew I’d have to love her fiercely.
So, until they can capture in their ‘testing’ the way she radiates pure joy, or tackles life with reckless abandon, or has overcome obstacles unimaginable – I’ll just have to travel with lots and lots of kleenex.
We love you so, Isabelle. Just the way He made you.
“I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well.” – Psalm 139:14
I soooo understand this! My son Garrison has had many difficulties. He didn't speak until he was 4 and even then only we could understand him and a lot of it was "Garrish"…his own language. At age 14 he has come a long, LONG way! I'm super proud of him! I do remember just blubbering and crying away when talking to teachers about him. Oh heck. I STILL do! 🙂
When he was about 8 he was looking up his name in the dictionary. Everyone knows what a military garrison is (which he thinks is super cool!) but he found this:
garrison finish- a finish in which the winner comes from behind at the end.
You have no idea how much this has given us peace! And the Lord spoke clearly to us, that in the end, he'll be exactly who God has planned for him to be!
Praying that the Lord gives you continued strength! I just know that sweet Isabelle will be exactly who the Lord has planned for HER to be! And she is!
Hugs and blessings,
Jenn
Your Isabelle is a wonderful gift from our Creator. She has a mighty purpose in this life. 🙂 She's not a number or a label. 🙂 She's Isabelle, wonderful, precious, beautiful, Isabelle. Sending you a big {{{HUG}}}. 🙂
*hugs* what a sweet post. It has to be hard but she has such a good mama and daddy to hold her through all the ups and downs and get her the support she needs to thrive.
Stefanie, I so understand what you are going through, as we have been down this road with my nephew (he is now 12)…let me just offer these words to you, your Isabelle is exactly who God intended her to be…she is such a blessing to your family as your family is to her…nothing can change that…she is a beautiful, wonderful, spirited, gorgeous girl, inside & out. God has a wonderful plan for her, of that I am sure! And with your family to guide her, she will soar!
Sending out BIG HUGS to you!!!
Love,
Patricia
You could not have said it any better! She is PERFECT and BEAUTIFUL in EVERY way!!! I wish she was in my class!! 🙂 With Love!!
i'm an elementary school teacher and for a few years i was given a sped inclusion class–usually 3 or 4 students who had a disability of some sort mixed in with other students. i always dreaded iep meetings because i felt it focused on so much negative when THERE WAS SO MUCH POSITIVE going on in all my children. i had parents who were angry, parents who were withdrawn, and parents, like you, who cried. you are not alone in your feelings. i know your child's teacher, and her therapists, psychologist, sped teacher ALL feel the same way you do, i promise. we all love those babies so much and i promise that no matter how dismal you think the data comes back, she is growing and learning. 🙂
wish i could give you a big old hug. 🙂
My heart so goes out to you. I was a teacher, and I used to dread meetings when I knew I had difficult news, and I cried over those meetings more times than I can count. When I became a parent, I cried even more because I truly understood what those forms do to parents.
I can tell your little angel has so many gifts that are not captured on the miles and miles of forms. Any teacher worth her salt knows that, too! She is so lucky to have you–kleenex and all.
Thank you for this post. Our little one came home from China with delays and medical findings that we weren't aware of. I'm so glad we only knew about her one special need because we may have been too scared to adopt her, because she is pure joy. We know she will learn and probably act differently than her peers, and that is hard to stomach just because we love her so darn much. It's hard, because we have noticed that most people only see her delays. That seems to be the main topic of conversation, not her beautiful smile and sweet nature, they don't see the lovely amazing child we see. That's the hardest part for me. That she will probably go through life being misunderstood. I think your Isabelle is beautiful, and she has an amazing mom to help her.
Beautiful post. What a treasure you've been given!
I used to hate Laura's IEPs…they always focused on her "disabilities" and how far she was lagging behind in percentages and averages. She was so much more than that! Now, she has awesome IEPs and at the last one, all her therapists and teachers focused on what she was doing well, and what her goals were…even if it was just imitating a "mama" sound. Progress in baby steps…yeah!!
This is so beautiful Stefanie. God chose you and He doesn't make mistakes. Oh the treasures and the wonders He gives us through our children.
Beautiful! Sometimes it's really hard to keep your perspective in these meetings. So many labels and scores thrown around that people seem to forget that there is a big, whole, amazing person at the center of the discussion. There's no way to truly capture much of our children's spirit or being with such a limited view. We are in the midst of a bunch of testing ourselves and I know just how you feel! Isabelle is fortunate to have a mama who will never forget what's really most meaningful about Isabelle!!!
There is nothing I could add that you have not already said. I get it…all of it. I pray for your family. Stef you are amazing!
As a special ed teacher believe me I hate listening to a child reduced to abbreviations,scales and scores. Really those numbers and scored don't tell you what you don't already know….learning is difficult or different for your child. What the scores don't tell are how magnificent your child is, how kind and generous, or hard they work every day. Your her biggest advocate and what ever you do don't let the teachers, specialist etc. try to squash your voice. You know what she needs to learn and be happy at school.
Beautiful post! There is no point scale for personality, for character, for all the intangible things that are just as important – even more so – than standards that are easy to quantify.
You are clearly doing what is best for her, and obviously you are a wonderful mother for her! And Isabelle quite clearly is full of life and a happy girl! It sounds like she has progressed so much since she came home, and is doing very well, on her own time and in her own way.
I won't tell you not to worry, because you will (because you are a great mom). But since you see her as the treasure that she truly is, I think you will both always be just fine!
All the best,
Nicole A., now in LA
He made her just the way she is with no mistake and gently placed her in your arms. He selected a faith driven, kleenex toting momma to love this sweet girl!
I have attended meetings just like this and it is just like a dagger in the heart.But just when I am taken to my knees I am reminded how blessed I am to be the choosen one .To be called momma by one of the most amazing little girls !No mistake he sent her to save me 🙂
Praying for your sweet one,
Nicole
What a beautiful post. I am sorry for the hurt, but I am so thankful she has such a sensitive Momma who loves her just the way God made her.
Didn't she have OHS in China? I'm sorry if I'm confusing your children! If she is the one who did, you *might* want to check into research about what being on heart-lung bypass can do. It is not scary per se, just might shed some light.
(((Big Hugs))) Leslie
perfect post!
perfect timing!
i could have written this about my baby boy…
the tears come often and for the same reasons you shared!
blessings!
Oh goodness Stefanie, this breaks my heart. I know what you're struggling with. My son who is almost four had gone through so much more testing than any child should have to go through too. We just had his IEP this week. He's doing well, but the teachers are talking extended school year. Which I'm glad that the services are there, but am sad we need to access them. Intellectual testing is one thing but he's also going through physical, medical testing too. Give us prayers.
yep, its all been said! God chose YOU to parent Isabelle – He knew before time began that you would cry tears of joy for every success and cry tears on your knees on her behalf. You are just what she needs. And she, is just what you needed. She is beautiful.
xxooxox,
Sara
I'm so thankful God chose you to be Isabelle's Mommie, and for her to be in your wonderful family. She is right where God intended for her to be. I cried and cried when I read your post, I feel your pain. Isabelle is so beautiful, joyful and precious. God holds so many wonderful things in His almighty hands for your precious little Isabelle's future. Sending my prayers, and peaceful loving thoughts.
Oh honey, now I'm crying. I'm a sap anyway, but I can feel your raw pain through your words. I'm so sorry…for her, for you. But you are a wonderful mother to her and I know that you love and parent her well. Very well. Keep doing what you need to do, kleenex in hand, to help her be all she can be. Love her and let her love life. It WILL be a good life. <3
You know your sweet Isabelle more than anyone. Some times, circumstances can cause children to react differently. One of our sensitive kiddos had to be removed from a certain situation and when we made this change, this child really began to be who God had designed them to be. {{{hugs}}}
I sent you an email.
Oh Stefanie…I have sat tearfully through those IEP meetings too. It's so hard to hear that your child is struggling. Last year, I bawled after Molly's IEP mtg. and this year, God opened a way for her to be in a small Christian school where she is getting much more individual attention. She is totally blossoming–getting good grades. Last year her teacher wanted to make her repeat her grade, said she was doing horribly in everything, etc. I dont' know exactly what was going on but I think being in a new school last year was so stressful for her that she kind of shut down. All she could do was try to deal with the stress and schoolwork came a distant second. Several of my kids have IEP's and sometimes life is just so very hard for them. You are a great mom and I know God will give you the strength and wisdom you need–but just know you are not alone in this. {{{big hugs}}
I have one like this . . . and you captured those emotions so beautifully in this post.
xo ellie
Beautiful! Thank you! We are walking this road with our bio daughter. I have done my share of crying. We recently moved and her new school is soooo awesome! They get her AND me! 1st time in 6 years of school. We have prayed and talked till we are blue in the face. I think God is showing me that if I can handle our sweet Liv bringing home a treasure with challenges will be no problem! Isabelle is so much like Olivia…they are not cut from "normal" cloth. The Lord has something special for them to do and their gifts will shine and they will soar later. The saying around our house goes.."Liv will be the president of the country or her own company one day…We just hope we live to see it!" Whew!!!
Beautifully written from one awesome mommy!
Keep it up! Isabelle with achieve great things because of the wonderful encouragement and unconditional love that she is receiving from her incredible family!
Way to go!!
pass the box of kleenex, please. love that girl.
I've been reading your blog for a while now and love hearing about all your precious kids, but Isabelle has somehow always been the one to tug my heartstrings a little more. She just radiates light, doesn't she? She is perfect, no matter what any tests say.
May all children around the world have someone to love them so fiercely. Because in the end, that is what will stand by our precious ones. Not the grades they made, not the accomplishments ~ it's the way they were loved and then therefore love others…
(shedding tears with you though)
Oh, this post touches my heart. 3 years ago when our son underwent hours of testing and I filled out all those same scales and questionnaires…oh, those days were hard. I cried too at every single one of those meetings. At one meeting near the end of the IEP process, I made it through without crying. And, my son's teacher actually hugged me afterwards and said, "You did it with no tears today!"….which then made me cry.
Going through that here as well. Nothing easy at all – totally understand!
Your writing about her difficulties, shows your love and care for her; she will do wonderful things, unknown at this time. I do wish you well while figuring out the maze of life and helping your daughter.
Alyzabeth's Mommy
My daughter also has delays that could not be easily diagnosed. I have a small background in special education and she does not really fit into any exact category. She seems to have a mix of institutional delays and then some learning issues thrown on top with some other mild issues thrown into the mix. I pray that you get some answers that bring you peace. It is so hard when our children don't measure up to the world's standards of normal. Homeschooling has made a world of difference for my daughter. The one on one attention and not being constantly compared to other children her age has allowed her to make amazing progress. Sometimes public schools have a hard time meeting special kids needs. I know you are incredibly busy with all your children and homeschooling might not be the best option for your daughter but I wanted to throw the idea out there. Your daughter is such a beautiful girl with an obviously sparkling personality. I love reading your blog and wondering where you live since I also live in New England. We are in the process of adopting to boys from China right now. Praying God gives you wisdom and guides you to the resources that will best help your daughter.
Stef,
I get it. You know that I do. There really are just no words to help others understand the journey are there?? Even nice and well meaning professionals can be hurtful with their choice of words….I suppose, not realizing it.
Like you say about Isabelle, I know what a gem my little sweetie is too. I truly get a glimpse of heaven through my little girl every single day!….Her eyes, her smile, her innocence, her incredible happiness, her angelic sweetness. How privileged I am to be her mom! ~Thank you Lord for blessing me with her and teaching me, through her, such profound life lessons.
Can't imagine how hard it must be. Will keep y'all in our prayers for strength, comfort, and answers! You are truly blessed!
So, I know I can't be the only one anxiously awaiting "gawsh. part 4."
Not so patiently waiting,
C.
Stefanie, your words of honesty, love and faith are encouraging and inspiring. And your Isabella is a beautiful, beautiful gift. Thank you for sharing!
My daughter was adopted from China in 2005. She was diagnosed at the age of 4 with autism. She is our world. She is funny, sweet, loving, compassionate, and smart. She has come a long way. She may always struggle with school, but she has already surpassed many in the loving and compassionate department. She was given to us for a purpose. I am a special education/general education teacher in a private school. I have developed a very simple autism program at our school. It is in its early stages. We are only getting better. We are training teachers in our very rural area. There were very few opportunities for autistic children when she was diagnosed, but we are changing that very quickly. We are introducing ABA into our area and I am on my way to becoming a BCBA. She is changing the lives of other autistic children and their families. We are educating teachers on how to write and implement IEPs. We are lucky and we know it. God blessed us with our daughter. Keep the faith, she will make a huge impact on others.
Blessings,
Starla