This Journey Our Life

Some Answers to Our Questions: An Update on Cami

Camelia, cami's health and progress, Family, personal, Special Needs, Special Needs ParentingRachel

As many of you know,  this past spring into early summer was filled with appointments in our endeavor to receive answers to some questions we had concerning Cami.  We received some answers back in June at which time we chose to only share with our family and some our closest friends.  

I had debated whether it was even necessary to publicly share the diagnosis (or if I wanted to), but after taking some time to let the reality of it sink in, I decided sharing it would be beneficial for both myself and for those who have been following along in our journey, some of you since Cami’s birth.  

This update is lengthy, but I've tried my best to break it down in an easy-to-read format to explain it in understandable terms. Thank you in advance for taking the time to read through it entirely.

Several things the doctor mentioned were a confirmation of some things we have suspected in Cami for some time now, so it didn’t come as a complete shock to us.   

The Diagnosis{For sake of clarity, I am including several direct quotes from the doctor which you will find in italicized quotations}  

The doctor (a Developmental Pediatrician) mentioned that: "while the main 'driving force' behind how Cami responds and relates to certain situations is her visual impairment there are other things which undoubtedly attribute to some of the struggles she's been facing" (in school primarily, though at home and overall as well); she restated that there is "certainly neurological issues going on in addition to her visual impairment". She then proceeded to define what neurological issues Cami's evaluation results indicated: "mild intellectual impairment/disability" and "autism" were two that she mentioned specifically.  

Summary of the doctor's thoughts re: Cami on the Autism Spectrum

She shared with us, that “while Cami is considered to be on the autism spectrum and the tests, evaluations and observations revealed ‘autistic-like’ tendencies, that is certainly not the core of who Cami is. She is considered to be high-functioning (she has speech) but other tendencies characteristic of autism (social skills, communication struggles, behaviors, sensitivities, etc.) which manifest themselves seem to be compounded by her visual impairment.”  

We asked her to explain exactly what the “mild intellectual impairment/disability” diagnosis meant.   

We wanted her to define it more for us.  

Doctor’s thoughts re: Mild Intellectual Impairment/Disability:  

She answered by explaining that, "Cami will always be learning (as are all children and adults) just on her own curve from her own starting point". She also reiterated the fact that we as her parents will know her best which she demonstrated by asking a question: she asked me, "What age-level do you think she's at?" to which I said, "I personally think….maybe 5??..." The doctor said that was a fairly accurate assumption, perhaps lower in some social skills and settings.  The doctor’s point was to reassure us that just as we've known Cami best until this point of receiving a diagnosis, we'll still know her best moving forward and will continue doing our best to provide the best environment—at home and school—to foster her continued neurological/cognitive growth and development.  

Some Clarification—(Our Thoughts and Opinion on the Diagnosis)  

We certainly don’t want to label Cami at an age-level, ability, or define her by a diagnosis, but knowing these specifics is an important factor in determining what academic and social goals are appropriate for her.  

We are also determined not to allow this diagnosis to confine Cami in any way. What do I mean?  We still feel like a lot of questions remain unanswered regarding her complete cognitive understanding so we will continue working hard to avoid categorizing all of her struggles under one umbrella—whether that be autism, an intellectual disability or even visual impairment.  At the same time it does provide a key piece to the puzzle we desperately want to piece together in order to view the entire picture of Cami’s needs. 

To be honest, it also helped to reassure us in some areas. An example? It offered an explanation as to why Cami reads at a K5 level entering into 3rd grade.   It also explained why the gap between her and her peers seemed to be widening rather than closing, providing an answer to a lot of the struggles she faced during this past school year.

 A Promising Future  

The doctor then told us that she thought Cami “has tremendous potential and could even be gifted in some things, such as music”, since Cami seems to open up tremendously when it involves something she enjoys (this was something which we always noted and were aware of too)! She also commented that in her observations of Cami "there is no question she is doing miraculously well; she is a miracle"  and “with the right resources in place, her future looks promising”! 

 Clearing up Confusion  

One thing that has been confusing for us in the past couple of years, is that sometimes Cami seems to "get" things, other times she seems lost; she has some good days (or even hours/moments!) and others not so good. The doctor said that the fact that sometimes there are moments of Cami "getting it" is "actually very encouraging and promising, but why it seems random is simply a result of how Cami's brain developed** to process things.” 

We realize that it’s hard to pinpoint exactly what is taking place in Cami’s mind--there is even question as to what is simply being masked by her struggles in communication and expression of thoughts and feelings. However, we are comforted by the fact the Lord is choosing to reveal it to us as He sees fit.  In the meantime, our aim is to provide her with the best tools and resources to nurture her learning, growth, and continued development.

{**most likely to due to her severe prematurity which resulted in a brain hemorrhage that she had for the first four months of her life}.  

Doctors and Decisions  

While we do know experts are not perfect and that we are certainly not required to follow each of their specified suggestions, we remain thankful to the Lord for the wonderful doctors and specialists He has allowed to be placed over Cami’s care. Each doctor’s genuine care and concern for Cami (and us) has been evident throughout this entire process and we appreciate that they have listened attentively to each of our concerns and desires regarding Cami and her care.  We feel confident that they have carefully considered each of our suggestions in coming to each of their own recommendations for Cami’s care, education, growth and development.

It has been such a blessing to collaborate with the doctors and specialists—as a team effort—the different ideas for what learning environment would be most suitable for Cami, while knowing the final decision(s) in her continued education and medical care remains ultimately up to us.

 Invaluable Insight

Maybe you are wondering if this diagnosis will change anything. If I had to answer with one word, I’d respond by stating: “No".   Yet, as we have come to learn with Cami’s needs, one word never offers the complete explanation or entire picture.  It certainly will not change how we interact with her, after all—she is our daughter! =)  

As any parent with their child, we have always known Cami and her needs best. However, in the last couple of years some very specific needs have become apparent which has been the driving force behind our seeking further answers. This diagnosis offers some insight into how we can better approach those needs, helping us piece together the puzzle.  

Now What?

Rudy and I want to thank you each of you who have been praying along with us. It has been a blessing to see the Lord work out each detail and we know it's a result of your prayers. We are thankful and relieved that the journey to receiving this diagnosis is behind us, but the future holds many more decisions to make. Right now, Cami is facing a couple of other ongoing medical issues (which could possibly be related to this diagnosis), so we ask that you would continue to pray for us as we seek answers to our questions and concerns with these issues.    

We also ask that you’d pray for wisdom as we seek the best possible learning environment for Cami, one that would support her specific needs, allowing her to reach her greatest potential.  

Any Questions?  

We’re often approached by people with questions about Cami, and I always admire the courage each person displays in asking out of their genuine concern for her.  If any of you have further questions, feel free to ask. We never want people to feel like they can’t approach us, and we’d rather you come to us instead of simply wondering or trying to draw your own conclusion.

Perfectly Planned  

We love Cami and are so thankful to have her as a part of our family! She is a miracle entrusted to our care by the One Who created her to be exactly who she is. 

We continue to trust the Lord for wisdom and guidance as we rest in the fact that He knows her specific needs, and He cares for her more than we could ever imagine. He will continue to guide us according to His perfect plan for her life, His perfect plan for ours.

Rudy and Rachel
Jeremiah 29:11