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.