results from the neuropsychologist

[Gwenny]

Long story short. She is considered intellectually disabled--they don't use the mentally retarded label anymore. She has an overall IQ of 68. Most all of the tests they gave her she "scored" as mildly impaired. The labels in order going down are average, below average, borderline impaired, mildly impaired, moderately impaired and severely impaired. He said that she was probably not born mentally retarded, it is from neglect and trauma and lack of stimulation. In case you don't know from previous posts, she was adopted from Liberia at 8 and is now 18. She seems capable in many ways, which makes things confusing because she doesn't seem to be so impaired, but it's because her brain only focused on survival skills in those first years. So, she does have some things like that. She also has no troubles with memory (short or long) and no troubles with attention. I think that helps her tremendously also.

I don't know exactly what this all means. Trying to take it in. He said she does qualify for any and all services for "disabled" people. He said that we can't really expect her to be much beyond partial independence. She is about the maturity of a 12 yo and probably won't be beyond that.

Anyway, I just wanted to share. If anyone has experience with any of this, I'd love your input.

[SetApartForHisGlory]

Hearing this breaks my heart! What she went through early in life :'( I am so sorry. But God is a good God, and I know He has great plans. You are all now in my prayers!

[Nealewill]

I have no advice either but bless you and her. I am sure you homeschooling her has probably aided quite a bit in getting her to where she is now. Praying that someone here can help you and give you some advice.

[LynnH]

Nancy praying for you. I know how hard it is to get information about your child that you weren't expecting. One thing I have learned from all the testing we have done with my son is that it is very useful in many ways as it does help you to set your expectations, helps explains some frustrations they may have etc, but the scores do not define your daughter. Only the Lord can do that. My son is able to do many things that he shouldn't be able to do.

As far as advice I did work with many adults with intellectual impairments when I was a Physical Therapist and the one thing I know is important is for you to make sure you are designated to make her health care decisions. Since she is 18 the law saws she doesn't have to let you know anything and they won't release information to you unless you have that set up. Here in Ohio we have something called BCMH that helps with job training, cognitive training,etc. I would assume you have something similar in Texas. It can be very useful. There are also other agencies that can help with young adults and finding job possibilities for them. In the mean time I would really focus on life skills with her such as handling of money, cooking, etc and if she is really interested in something that you think could end up being a career for her then look for volunteer opportunities for her in that area. For example at the animal shelter where I volunteer we have had volunteers with mild intellectual disabilities there because they love animals and want to do something like eventually work in a boarding kennel etc.

One thing I always have to remind myself after we get test results is that my son is the same wonderful young man after the testing as he was before-a label or an IQ score doesn't change that.

[Gwenny]

Thank you for the encouraging words! I do need to remember those things. I will look into the medical form. I will also check out services here. It's rather daunting to think that it's "all on us" to help make these things happen.

[michiganmama]

I'm not a "regular" here, but I want to encourage you and tell you what a good mama you are! You are being God's arms wrapped around your dear girl.

[my3sons]

Gwenny, thank you so much for sharing about your dd! I know that must have been hard to hear, and yet clear answers are sometimes just the catalyst needed to move ahead. I have prayed for you and for her as you move forward. I think LynnH had some wonderfully wise words of encouragement. The Lord has created your precious dd in His image, and He has an important purpose and big plans for her. I will keep praying He reveals with clarity your next step with your dd, and that He makes His good and perfect will known to you. I have always been leery of testing. I think it is due to my many years working in education within the public school setting prior to my homeschooling my own dc. At one point almost 1/2 of my class was diagnosed with learning disabilities, and many were diagnoses such as ADHD, ADD, etc., and more and more drugs were prescribed. It turned me off to testing, as many dc's abilities decreased substantially due to being heavily medicated. More than 1/3 of my class was seeing the guidance counselor as well, and many of them confessed they just liked to get out of class and have candy bars and games with her. Anyway, the background I come from included over testing, over medicating, over treating dc (primarily boys) who were just going through puberty or just having a tough time sitting still in a desk all day in a small classroom. With our own dc, testing revealed the need for speech therapy, a round of steroids to eliminate fluid in my son's ears so he could hear, the need for OT/PT and wearing a helmet for a year, and recently the need for contacts. So, I can see the benefits of testing and the drawbacks of it. I am very thankful you have shared your results here, and I will be in prayer about her progression! God bless!

In Christ,
Julie

[Gwenny]

I am with you my3sons. I have never done any testing of any kind on my children, until her. I have done vision and hearing tests though and it's great to know the limitations they have with those things to help them be successful. I realize that with her and her struggles, it isn't vision or hearing, but her brain that is struggling. It is helpful to know what those limitations are so they we can change what we are doing to meet those. (like getting glasses or hearing aids) I now know a little more about what to do. I realize now how many times I've gotten her in "trouble" or been upset at her for doing/saying things that weren't her being defiant, she really didn't understand or couldn't do or whatever the situation. I really have been feeling like I'm going crazy because she is such a puzzlement. I have wondered after all of these years, am I crazy? am I holding her back? am I wanting her fail and therefore setting her up for it? am I not treating her the same as the others and providing opportunities for her? am I totally misunderstanding her? I was able to say these things to the doctor after he told me many of the results. It was encouraging to hear that I'm not crazy. I'm not making things up that she doesn't get it. I felt the same way after I took her to the math tutoring place, when he found she was early 2nd grade at best but they would start at the beginning, I was so relieved--that sounds horrible. I KNEW that's where she was and was banging my head trying to teach her but everyone around me didn't really seem to believe me. All I heard was, "really, we don't see any of that, she is so....(insert a million things here)" I don't know that they were, but I felt that everybody thought I was doing her a disservice and being down on her.
Sorry to ramble! I am encouraged to be on a new path and feel I have some direction. I need to figure out what to tell her about the testing results. I didn't think to talk to the doctor about that.

[deb]

Gwenny, I can definitely identify with you about feeling like you're crazy! My husband and I have both felt this when working with our son who often seems so capable but other times seems unable to follow even the simplest instructions. We have also received comments ranging from accusations of him just not trying (we knew that wasn't true) to suggestions that he's just a late bloomer to blank stares (you mean he's 15 and can't learn math facts??) It was encouraging to us to receive the test results, and I believe that it made us better able to parent him by understanding that he does have some real struggles. We delayed the testing for a few years to avoid having a label put on him. However, the diagnosis we received gave us relief from the frustration of not knowing and even the shame/guilt of possibly not being an adequate teacher for him. The fact that my older son was homeschooled exclusively and went to college didn't stop those raging guilty thoughts. I hope you can find comfort in knowing that God does indeed have a plan and purpose for our special kids. Although my son's early life wasn't as tragic as your daughter's (we got him as an infant), their early life struggles do have consequences, but God can use it all for His glory and for their good. Here are a few blessings that I see in my son because of the struggles that he has had: he has a soft heart toward hurting people, he knows how to seek God during difficult times, he's sensitive to the Holy Spirit speaking to him, he's sweet and innocent like a child who is a few years younger, and recently he's become very vocal about his thankfulness that God gave him to us to raise so that we could help him through these issues.

One suggestion for you to consider: I think something that is very important is to capitalize on their strengths while helping them in areas where they are weak. They need to feel successful instead of always struggling. We have encouraged our son in martial arts because he is very good at it - in fact, skills that are usually difficult for him (sequencing things, receiving several directions at once, organization, distraction...) seem to not be an issue during martial arts class. I don't know why! His success at martial arts is very important to him.

Another thing we have done is to allow him to pursue relationships with older, godly men. They are mature enough to see past his limitations and to really see his passion for God and to encourage him in his spiritual growth. They have also challenged us when we become too focused on the limitations and have encouraged us to push him a little more or give him leadership opportunities in safe environments.

I'm glad you're a new member of the "now I know I'm not crazy" club and can focus your attention on finding resources and opportunities to help your daughter.

[my3sons]

I am with you my3sons. I have never done any testing of any kind on my children, until her. I have done vision and hearing tests though and it's great to know the limitations they have with those things to help them be successful. I realize that with her and her struggles, it isn't vision or hearing, but her brain that is struggling. It is helpful to know what those limitations are so they we can change what we are doing to meet those. (like getting glasses or hearing aids) I now know a little more about what to do. I realize now how many times I've gotten her in "trouble" or been upset at her for doing/saying things that weren't her being defiant, she really didn't understand or couldn't do or whatever the situation. I really have been feeling like I'm going crazy because she is such a puzzlement. I have wondered after all of these years, am I crazy? am I holding her back? am I wanting her fail and therefore setting her up for it? am I not treating her the same as the others and providing opportunities for her? am I totally misunderstanding her? I was able to say these things to the doctor after he told me many of the results. It was encouraging to hear that I'm not crazy. I'm not making things up that she doesn't get it. I felt the same way after I took her to the math tutoring place, when he found she was early 2nd grade at best but they would start at the beginning, I was so relieved--that sounds horrible. I KNEW that's where she was and was banging my head trying to teach her but everyone around me didn't really seem to believe me. All I heard was, "really, we don't see any of that, she is so....(insert a million things here)" I don't know that they were, but I felt that everybody thought I was doing her a disservice and being down on her.
Sorry to ramble! I am encouraged to be on a new path and feel I have some direction. I need to figure out what to tell her about the testing results. I didn't think to talk to the doctor about that.

I was reading through your questions and thinking how many questions DO seem to come to mind as we do our best to raise our dc! Being a parent is an incredible gift that comes with so much incredible responsibility. It feels overwhelming at times. Especially as a homeschool mom, as in the back of my mind I am thinking if things get messed up, it was probably all me. In the midst of all of the day to day joys and hurdles, I do try to remind myself that though I am not a perfect parent, on the big things, I think we are getting it right. Christ in the school day? Well, that has to be better than no Christ in the school day, which is what I had growing up. More time home together to live together as a family? Well, that has to be better than no time together as a family. More time where our kiddos have to become each other's good friends because they are together all of the time? Well, that has to be better than no time together with their siblings. The ability to take control over what our kids eat for the most part? Well, that has to be better (overall) than pre made lunches for 300 kiddos or drive-through open lunch food every day. Hearing my Dad has cancer together because we were all homeschooling together and crying and praying together right then? Well, that has to be better than facing it alone, right? And the list goes on. Our dc are having training in 'life' by being homeschooled. I have to think being a husband or a wife won't be quite as tough of a transition for our dc if they first had to be a helpful son and daughter in the home. I do care about academics - a lot - I come from a family of over-achievers. But, I care more about eternity, as it's forever. That is #1! No Christ - no life together forever in heaven. Pretty important.

So, your dd has a wonderful mother who has her priorities straight, who is going to the ends of the earth to figure out how to help, and who is keeping perspective about it all - that is, that God is in control, He is not surprised by this, and He is doing all that is needed to equip you and your dd (and me and my sons and all other believers for that matter) for the tasks at hand. He makes no mistakes. So, here we are, equipped even though we don't always feel like it, purposed for His glory, even though we don't always understand it. And here He is, with us through it all. I told my mom amidst her tears when she lost my Dad, "We are going to be ok. Do you know why? Because we're tough. And we'll get through it together. With God by our side." We were (and are) strong in the Lord. And so are you and your dd! Of all that I said to my mom after losing my dad, that one small statement has been what she has commented on finding hope and courage in the most. So we put our chins up, we square our shoulders, we roll up our sleeves and get to work - His work - because we are fit for these tasks! God said so, so it must be. May God bless you as you rise to the occasion and forge ahead, making progress, making memories, and making His glory be revealed in your strength through Him!

In Christ,
Juile

[Gwenny]

Thank you so much for those powerful, encouraging words. You are correct, God does say that we are equipped, so we must be! Wow. That's something to think about. We are plugging along, and I need to totally lean on Jesus--like we all do.