Post # 1
Annabelle, my dear sweet wonderful amazing daughter, has officially been diagnosed withn Non-Verbal Learning Disorder. It is very similiar to Asperger’s.
My daughter is exceptionally bright. Her IQ is very high and she is quite gifted at art and music. She is a talented although inconsistant gymnast.
Her grades are good but not nearly as high as they should be. She has no depth perception and is very clumsy. She has few friends and has an extreme difficulty in maintaining friends.
We have finally finished our battery of testing at the local children’s hospital and are now officially beginning our journey into the world of autism.
Two weeks ago, I complained about the way other adults treat her in public. Her behavior has continued to go downhill and we are now seeking a behavorial therapist to help Annabelle deal with this overwhelming world around her.
She is sensitive to : noise, smell, touch (harsh fabrics or fabrics washed in normal detergant). She is unable to eat rice because the texture makes her gag.
She is also sweet, loving and the most empathetic child I’ve ever met.
Instead of looking at this as a new struggle, I am trying to look at it as a new journey. Her symptoms will get worse if we do not get her into the right therapies as soon as possible-but of course her school system is fighting us.
Oh, and my family believes NOTHING IS WRONG and I am just an ineffective parent.
But I’ll tell you right now. I wouldn’t change her for the world.
Post # 3
I’m sorry that it seems as if you can’t get any good news, but I really do think that you have the right attitude about this. My best friend works with autistic children every day, and she said the worst part about it is parents who are in denial and who think there is nothing wrong with their child. They then don’t get the right therapies to improve their situation and they fall farther behind…so just from listening to her stories and yours, you’re already one step ahead of the game in being a very supportive and willing parent. Annabelle is very lucky to have such an exceptional mom.
Post # 4
Oh and they also think she might have OCD because she has some verbal tics. She also seems to be nerologically incapable of stopping once she starts talking. If she does not finish her statement, she will have a panic attack.
I just wish life could be easier for her
Post # 5
I have been thinking about you.
Good luck on your journey with Annabelle. It sounds like she is a wonderful child who just needs the right tools to understand and live in her environment.
I’m sorry the school system is fighting you and your family doesn’t recognize her differences.
Your approach to this sounds correct and the like the healthiest approach for Annabelle.
Post # 6
I can imagine this is a somewhat difficult, yet relieving time for you. I HIGHLY recommend reading “The Highly Sensitive Person.” Just google it and you’ll find it. It’s an amazing book.
And I can tell you that as a teacher, these are some of my absolute favorite kids. They tend to just sense things.
Good luck with your school. Fight for what you think Annabelle needs! I’d be happy to help you word things in a way that schools will respond!
Post # 7
@2PeasinaPod: Thank you. Annabelle means everything to me. She really is so special and so unique.
I’m actually glad to have a final diagnosis and that they are taking it more seriously than just calling it ADHD which was her initial diagnosis (at 3 years old!!!)
I just wish NVLD was recognized by our school district.
Post # 8
Awww…. I will definitely start praying for you on this one. I know that being a mom is hard enough at times & dealing with the stress of trying even moreso to help your child I’m sure can be really tough! I’m sure you’ll find the Dr.’s & Therapists that work best for her 😉 I’m sure your family is a great support system for her and really that’s all she needs right now… I learned a long time ago that having “friends” isn’t always what it seems, and I’m sure that in time she’ll have those special girls come into her life that are going to be GREAT to her and just “Get her” =) Praying favor in your searches and peace in your heart! =)
Post # 9
Have you looked into getting her an IEP and GIEP if she’s in public school? (or is this the fight you are talking about? – I know schools hate spending money on either program, they tried to kick my entire class of gifted students out in high school becuase they didn’t want to pay for a GI)
My brother had a slightly similar problem (gifted/high IQ, learning disability, as well as behavior problems similar to Asperger’s, hearing problems, speech impediment). and while he “grew out of” some of his problems (speech and hearing) having the specialists at school keeping an eye on his development really helped him, as did finding areas he could focus on. My parents did have to keep on top of them sometimes because of school district problems but with a good set of doctors and then specialists at school he is becoming a excellent, functional, and contributing member of society (he is in school for civil engineering and loving it)
Post # 10
I work at a Naturopathic Clinic, and one of my Dr’s is a DAN (Defeat Autism now) Dr. I have seen miracles in my clinic! Here is a website that has a listing of DAN Dr’s. I’m not sure if this is something you have already considered, but here you go:
Best of luck on this new journey!
Post # 11
Poor thing just gets so anxious and stressed out about everything. We close on our new house next Friday and poor Annabelle is having anxiety attacks as well as stomach issues. We’ve met with the therapist, visited the new home several times and I’ve even timed the drive from there to my mom’s to show her things aren’t changing too much.
My frustrations are not with her. It’s just hard to love someone so very much and to watch them struggle.
She just wants some friends 🙁
Post # 12
@Knubbsy-Wubbsy: I’m not sure what a GIEP is. She is only on a 504 now. Her district is fighting the NVLD diagnosis because her speech scores are exceptional. Right now the only modifications we get is she sits in the front of the room and is allowed “quiet time” in the hallway when the room gets to loud and rowdy.
@michkarose: Ya know, I have heard of DAN dr’s before (thanks Jenny McCarthy!) but I had not linked that as a possible option for Annabelle until you said that. I’m sure there must be some in or around Boston. THANK YOU!
Post # 13
@SoontobeMrsA: I have a cousin who is now 22 and has a form of autism that sounds very similar to Annabelle’s. She has similar issues with verbal tics and must continue finishing her verbal thoughts. She also has the same types on sensitivty issues. She also does have some OCD tendencies. I share this with you, because my cousin did struggle to make friends growing up, but the older that she got the easier this became. She is now in college and has a great set of very “quirky” friends. She even recently has gotten her first boyfriend. I remember people thinking that my Aunt was raising her incorrectly as well, which by the way she ran the psych dept at Duke university, so not an ineffective parent either. Hang in there! With an amazing mom like yourself, I’m sure she will prosper as well.
I would suggest seeking and pushing for other educational options.
Post # 14
I was a Special Education teacher for a few years, and this is my advice to parents – the squeaky wheel gets the oil! Educate yourself as much as possible about what she is entitled to and be pushy if you feel her needs aren’t being met. Document EVERYTHING, ask lots of questions, and be hopeful! I knew some awesome teenagers who were on the Autism spectrum and saw them grow and succeed. Good luck!
Post # 15
My husband is a high school teach and he’s said on several occasions that he’s only had good experiences with students on the spectrum. He says they’re usually good students, well behaved and he loves their honesty.
It’s a tough diagnosis for any parent to deal with but just wanted to offer you some positives, hopefully the therapy will help make the world less overwhelming for her. Prayers for both of you.
Post # 16
I normally don’t share personal info about my child, but here goes anyway. My daughter is going through the battery of autism testing at the moment, her language has a lot of problems. Well, there’s other stuff too (only repeating words and questions instead of responding, excessive stacking and organization but no imaginative play), but that’s the main concern. I think your attitude is good. I’m going about it daily with the mentality that I’m not going to dwell on “Why is this happening to us” or “I wish she could have a normal life.” She can have a happy and normal life, but her normal might not be my normal. I know my daughter is special, but I’m also working hard to ensure that she feels she has a non isolated place in the world. I don’t want her to feel that different= struggle.
Good luck on this journey, I know how insane and exhausting it can be. BTW, PM me if you want info about the Ladders program in Boston, they have been phenomenal.