June has been a difficult month for my family. I really am struggling with how to begin to talk about it here. I suppose I will just jump into it.
Most of you know that this week we spent several days down in Texas at an Autism clinic to get Abbi evaluated and to work on a course of treatment from this point forward. These are a few of the primary markers. Abbi exhibits nearly every one.
As you may have guessed by now, as of Monday, Abbi has been officially diagnosed with severe Autism. In addition to this, she has been given a primary diagnosis of Global Developmental Delay.
We have been battling mixed feelings about all of this the past few days. While it is something we have expected for years, there is definitely a sense of grief that comes with the finality of having these diagnoses written in stone, so to speak.
There were many things that seemed to hit home and catch us off guard this week. We had always known for example, that Abbi is developmentally delayed. What we didn't realize however, is that her average developmental age is that of a 6-9 month old baby. We had suspected she was somewhere in the 18 month range, but we were mistaken. Hearing that our beautiful, nearly-seven-year-old daughter was functioning at the level of a baby was heart-wrenching.
There have been many moments where Kevin and I have just held each other and cried or vented at the unfairness and fragility of life. Even still, we are doing the best we can to try to think proactively rather than succumbing to the constant pull to give up and just sit under the covers and sob. (Have I mentioned that June has been a tough month?)
Back to the proactive part.
One of the primary reasons that we went to this clinic was to gain a new plan of action for Abbi to try to help her as much as we possibly can. Her doctors worked together all day Monday to come up with the right plan for her.
The first thing the team wants to do is continue with more testing. They are planning to do a swallow study to see if there is a medical reason, beyond her sensory issues, that is causing her to eat so poorly. We will need to go back to San Antonio for this test.
They want to do more genetic testing as well. For anyone out there who has had genetic testing done and is still looking for answers, this is something I hope you will find interesting. Abbi has had an incredible amount of genetic testing done to see if we could figure out what was the primary cause of her disabilities (they consider Autism a symptom of a bigger "umbrella" diagnosis). The doctors described to us that she has had more blood drawn for genetic testing throughout the course of her life than exists in her body today. Up until two years ago (our last Geneticist appointment) they had tested her for everything that would even remotely fit her condition. In addition to the blood tests, they have done spinal taps, biopsies, MRI's, CT scans, and the list goes on and on and on, all without one single answer. Long story short (too late), they told us of a new genetic test that has emerged over the course of the last 2 years. The type of testing they had been able to do before when looking at her chromosomes consisted of a very vague "birds eye view." They were able to examine the basics of the chromosomes to see if they were all there, out of order, etc. They could not however, gain an up-close look at each of the chromosomes individually in this type of test. Now they can get detailed views to see exactly what each chromosome looks like, specific properties, and if there are any abnormalities or deformities as well. All of this can be done here with one simple blood draw. Not only will this help to shed light on to what is going on with Abbi (our primary concern), but it may also give us more information about why I have had such trouble with infertility and miscarriages.
Now... if you made it through that lengthy genetic discussion, thank you. More interesting information ahead, I promise.
The final bout of testing that they have suggested at this juncture is an I.Q. test. The doctors described to us that her I.Q. is much different from her developmental level, and that in most kids with Autism their intelligence is much higher than what they are able to express. He also said that if this is not the case, and her I.Q. test comes back lower than expected, we will have to look at the possibility that Abbi may never be capable of learning much more. He used the word mental retardation. Because I can hear that word in a medical context and think of what it means (quite simply - retarded means delayed), I can grasp that diagnosis without as much defensiveness as some. My husband is so protective of our children, and loves them so so much, that it physically pained him to hear her condition referred to as "Mentally Retarded." I don't really know that the sting ever goes away hearing the list of conditions that get tagged onto your child to describe them as defective in the medical sense.
To us, Abbi is perfect, and will always be Abbi, no matter what her medical records say. Even though we know logically, that she is going through all of this, and that we are trying to navigate it as a family, it is difficult to have to face things in such a raw way sometimes. Still, because we have known her and loved her for her entire life, she does not seem "defective" to us, if that makes sense. All that this is, is an opportunity to better understand all that she has on her plate to deal with, so that we can help her better.
On that note, to help her delays, they are suggesting that she continue on with Occupational Therapy, Physical Therapy and then start Speech Therapy - 1hr each per week. In addition to all of that, to really really help her with the Autism aspect of it, they are suggesting an intensive ABA program for her, that will span 25 hours per week. When they first told me that I was taken so aback by the amount of time that I asked them to repeat themselves. I have since learned that ABA Therapy requires an intensive schedule like this to really work. There are several types of ABA Therapy and each Therapist will also do things a little differently. You can read about the general idea here if you're interested. We are going to push for the reward based (instead of aversion based) therapy for her as that seems to align with our parenting style the most, and it will also provide a highly effective teaching method for her.
Unfortunately, there are no speech availabilities here, and there are no ABA Therapists within driving distance for us here. To my knowledge, there are no ABA Therapists in the state of Oklahoma.
Because of that, and because Abbi has a need for so many specific specialists (Developmental Pediatrician, Developmental Psychologist, Pediatric Neurologist, etc etc etc), the Exceptional Family Member Program (EFMP) is putting in for a Compassionate Reassignment for us to a post that has all of the services Abbi could need. There are a few options (Ft. Hood, Ft. Sam, and D.C.), but the best option of all is Ft. Sam in San Antonio. We have family there, so we would have a built in support system. They have two military medical centers, all with doctors Abbi has seen before and is working with currently. There is a large # of ABA & Speech Therapists in the area that we could choose from. Medically Ft. Sam makes the most sense.
There are also state-funded Autism-specific daycare centers there that would take her. They also provide daycare services to siblings of Autistic children, which is no less than a blessing if we do get to go. I have been in contact with over 35 daycare centers in our current area, and not one of them has said that they feel equipped to handle her, which has left me without an opportunity to work or go back to school. While I am happy to do whatever I can for my girls, and my family, I am also so anxious to have a little time to myself to refresh now and again. I know something like that would do a world of good for all of us!
The predominant difficulty in all of this, logistically, is that Kevin will have to re-class with the military and find a different type of job. The paperwork is being submitted by the end of the week for the Compassionate Reassignment, so things will start moving pretty quickly over the next couple months.
All in all, this is good news. Its been an incredibly emotional journey this past week, and one that I am glad I can say we are done with for now. I know this is just the first step in so many ways, but I feel that at the very least we are finally on the right track.
Thank you all for sticking with me so far. I know this has been incredibly long. I will be getting back to sewing here soon and will have a lot to share with you home & creativity wise. There are a lot of wonderful things in the works here behind the scenes, including a few more giveaways, so stay tuned.
I'll leave you with a parting shot of my little beauty... We love you Abbi.
I am soo glad that you guys got to take this trip and find out some answers! Reading this I just wanna cry.(Just a tad emotional lately) Just to think something might be wrong with our babies is heart wrenching! Abbi is such a sweet girl! By the sounds of it a move to Texas would be GREAT for your family and the benefits are endless compared ot what is here in Oklahoma ! I hope you get your compassionate reassignment! You are such a strong woman! I admire that! I love reading your blogs and can't wait to hear updates in the future!
P.S. Great pic of Abbi! =) I wish you guys the best!
Posted by: Amy | June 26, 2008 at 03:20 AM
She is a beautiful child. I hope and pray that you will be able to go where is best for your family. You're so right to recognize that you need some time to yourself, too. I wish for all the best for you!
Posted by: Kathi D | June 26, 2008 at 05:32 AM
Abbi is indeed a beautiful child. I am a firm believer that God makes no accidents and Abbi is exactly the way HE made her for a reason. It's a hard road, but there are so many blessings along the way. Email me, call me, let's get together if you can, or whatever you need to do before that reassignment comes through.
Posted by: Kimberly | June 26, 2008 at 06:48 AM
A hard diagnosis to handle... that's for sure. But things are the way they are regardless of whether or not the diagnosis is there. This diagnosis can help Abbi and the rest of the family - finally getting the help you need that others take for granted...
Great picture of Abbi :)
Hugs.
Posted by: Diane | June 26, 2008 at 08:53 AM
she's beautiful.
i can't thank you enough for being so transparent and vulnerable over the past few weeks. all of us have something we're dealing/or will deal with, and your family is showing us how to stay alive...the way you walk your story affects what we do with ours, and so it goes. thank you, thank you.
i'm a native texan (snyder to austin), and right now i pray that your move will be smooth, that God would grant you the blessing of a peace-filled transition.
i know that God is wild, and, frankly, it's often scary to follow him. but that very same wild God says over and over that he has a plan and a hope for those who love him. and he has even given himself the name "emmanuel" to tell us a bit about who he is and how he wants to love us~ God is with us. hold on to it. hold on to it. hold on to it. let him love you. don't box him in.
with so much love,
♥ mystele
Posted by: mystele | June 26, 2008 at 09:05 AM
I am so glad that you finally have something to work with now as far as an official diagnosis! Hopefully help will come somewhat easier now. As much as I would hate to see you leave, I pray that Kevin gets that Compassionate Reassignment. Abbi is such a beautiful girl and so worth everything you are doing for her! Just remember to "Be Still".
Love you much!
Kami
Posted by: Kami | June 26, 2008 at 10:49 AM
Kristen, I stuck with it to the end and am just amazed at how God is guiding you and your family during this time. I know you could use a big hug- I am sending one your way. I am praying that all goes smoothly for you all to move to FT Sam.. Know that you are loved.. Kami said it perfect- and it is a reminder to all of us- Be Still.. God is in control here..
hugs,debra
Posted by: Debra | June 26, 2008 at 10:58 AM
I'm sorry I haven't said much during your month of June...I know it's been rough and you have been a priority in my prayers and I have set you and your family on the prayer chain here at work.
Anyhow - when we were there, Abbi was never "abnormal" to us either. She's beautifully smart and innocent. Haileigh STILL remembers her...and her spirit and tenacity in life just rubs off on everyone that truly loves her.
I wish I could be around more...I miss you dearly. Place your lives in God's hands and you will find peace.
PS...stop apologizing for the length of your blog posts. Everything you have to say is interesting and I never skip through any of them.
She really is beautiful Kristen...just like her mommy.
Posted by: Jillian | June 26, 2008 at 11:34 AM
We're certainly praying for you and your family.... beautiful pic, too, btw
Posted by: Robyn | June 26, 2008 at 11:54 AM
I have just recently started reading your blog so am new to this news. I am so sorry, even though y'all have realized that she probably had autism, I can imagine that having it diagnosed for sure was very hard. I will be praying that everything goes well with the reassignment to San Antonio. I have heard it is a beautiful city, dh has always wanted to visit, it is only about 6 hours from where we live.
I can't imagine how difficult this past month has been for you {{{{big hugs}}}}
Posted by: Tonya Richard | June 26, 2008 at 02:31 PM
This is the first time I have read your blog and my heart goes out to you and your beautiful family. Abbi is a beautiful little girl. I will keep you in my thoughts and prayers. I hope being in San Antonio will give your family some peace and the help that Abbi and you needs.
Posted by: Susan | June 26, 2008 at 02:53 PM
I'm glad you're getting answers. I'm sorry this month has been so difficult - BIG HUGS. Your Abbi is very lucky to have such amazing parents.
Oh, and one more positive side of San Antonio - I'll be in San Angelo starting next fall (officer training school.) =)
Posted by: Sharon | June 26, 2008 at 03:24 PM
I can empathize with you over how difficult it is to absorb a tough diagnosis, and my heart goes out to you. It's amazing what you've been able to do on your own to this point! You are so inspiring. Sending warm and caring thoughts your way~
Posted by: elsa | June 26, 2008 at 04:25 PM
Love you Abbi!!!!!!!!!
Thank you for posting this Kristin.
Posted by: Kevin Rose | June 26, 2008 at 06:34 PM
Kristin, she is so beautiful.
I'm sorry the diagnosis sounds grim right now. I'm really hoping that knowing what's wrong will help you and the doctors to really help Abbi live her life to the fullest. I'm also really hoping you get San Antonio!
Posted by: Dove | June 26, 2008 at 10:14 PM
Oh Kristin, what an incredible story. My hope for you and your family is that you get restationed to San Antonio, because it sounds like they have some really amazing people who could do some amazing things for your family.
Being a fellow Oklahoman, I am upset and quite frankly a little angry that this state doesn't have any ABA therapists, and basically doesn't cater to families dealing with autism.
You are an amazing woman willing to do anything it takes for her family, and that is truly admirable. Stay strong and know that you have an entire community here to comfort and support you when you need it most.
Truly,
Amy
Posted by: Amy B. (Early Bird Special) | June 27, 2008 at 06:48 AM
Wow, that was a lot for you guys to take in at once. Let yourself cry and get mad and then get on with it. Things will work out.
Life will be a challenge for her, but she is beautiful and will make life a brighter place for you. Sending you strength!
Posted by: Lynn | June 27, 2008 at 10:11 AM
Much love to you and your family. I don't really have any other words for you right now. Life is such an odd trip, we almost never know where we will end up, so we might as well love the journey, taking it day by day.
Posted by: Robin | June 27, 2008 at 10:22 AM
I'm so glad you have answers...for us it was heart-wrenching and a bit of a relief. I also know it is hard to be pro-active when our children are involved....emotions seem to run high.
When Brady was diagnosed I thought they were crazy, although I had been suspecting it all along. Also, when he was more recently diagnosed with severe Apraxia, I thought ...What? Not Brady...he's perfect!
Abbi is beautiful, and lucky to have such a committed, loving family....something she will need throughout her journey.
As always, you and your family are in my thoughts and prayers.
Posted by: Shannon O. | June 27, 2008 at 10:13 PM
I have been reading your blog for a couple of weeks now. I'm so sorry thigs have been so tough for you lately, I really am. One thing I wanted to tell you about. My friend has twin boys, both are autistic, 3 years old. They lived here in middle Tennessee but moved to Minneapolis/St. Paul because they have a great school system and state resources for autistic kids, more than the rest of the country.
I have another friend, her son has Ausbergers? Mispelled. Her son is in a program at Vanderbilt. Its a type of autism.
I'm praying for Abbi and you. Amie
Posted by: Amie | June 27, 2008 at 10:36 PM
Abbi is a cutie and God knew you would be the parents she needed. I lived in San Antonio for a while and hope you get your move there. God will see you through this. There's a song I love with a line that says, "to hear Him say, this one's mine, child of the living King." I'll think of Abbi when I hear this song from now on. I love your blog. Do not change a thing.
Posted by: jancd | June 28, 2008 at 02:48 PM
Well first of all you never have to be sorry or rationalize what your writing. This blog is your outlet for whatever you want it to be.
Second and more importantly-you have touched me with your sincerity and how you just lay it all out there. i can't imagine how hard this month has been for you but you have been an amazingly strong woman and Abbi is so lucky to have you and your husband for her parents because it is so obvious how much you love her and that you would do anyting for her.
I know this must be very hard having the facts "written in stone" but nothing will change what Abbi is for you and that she will grow up to be a wonderful person and touch people in her own way.
You are all in my thoughts!
Hugs
Posted by: Myriam | June 28, 2008 at 06:10 PM
May you be supported by loving and caring people. May the paths that open up for you and your family lead to that place where you will find the help you need, where comfort and solace embrace all of you, and where hope and joy glimmer ever brighter with each day.
Posted by: ellen kelley | June 29, 2008 at 12:33 PM
Kristen,
I know this must be incredibly hard for you. I hope that the journey ahead will find you with both strength and peace.
Posted by: Sarah | June 29, 2008 at 04:39 PM
Wow! That sounds like a lot to digest and process. Praying for you that all the details for the transfer fall in to place smoothly! And praying that they're able to do the test you discovered and find some answers!
Posted by: Jen | June 29, 2008 at 05:57 PM
My thought is that it's better to know what exactly is going on, even if it's something you may not necessarily like to hear. I have two cousins who are concidered mentally retarded, so I understand to a point about the stigma with the words. It sounds like with the move, there are new opportunities out there for everyone. Wish you and everyone the best.
Posted by: Sarah Mackenzie | June 30, 2008 at 04:15 PM