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Q is verbally behind.
It's something we embrace, struggle, triumph, and cry over more days than we rejoice.
From the beginning of our journey, we've been hyper aware that Cochlear's are a very hard tool to learn with. Yes, they provide Q opportunities most don't qualify for, and for that we are thankful.
But to be clear, we are asking his little body and brain to do something he was not initially wired or created to do well - and that's to Hear.
Along with that, he's beginning his hearing and speaking journey bilingually. Pretty impressive!
It's also so much input. It's an enormous amount for Jim and I to sift through, learn, teach, grown, and adapt to. I look at Quinn's brilliance and growth even over the last three months and I'm astounded. Most days I watch him communicating, jabbering, and being an overall incredible little human growing so perfectly and I'm in awe.
Some days I'm still angry.
Really angry.
For him, for me, for us.
I'm not sure if that will go away with time. Many days it's self blame ('what did I do while pregnant to cause this'), other days it's anger on his behalf ('why is my beautiful amazing child being challenged so much already so very early in his life'), and I'm at a loss. We will never have answers. And the anger is ridiculous. He's a beautiful, healthy, happy, and very loved child. I don't want him to be any different than he is. My soul and heart just hurt for him because I see the hard work he is doing already...and as an adult I see with clarity it will be the 'norm' for him during his entire life. His anatomy will require he work harder at everything. As his momma, that will never not hurt me, though on the deepest level I see the beauty of his creation and how incredible his little soul is. If anyone was built for these challenges, it's Quinn.
In these days and moments, it never fails that something good is presented in one form or another. In a word from a mentor or teacher. In a kind note from one of our plethora of providers. In an unexpected text from a friend, or even while we are out the kind words of strangers.
The impact Q is making on my world, our world, and our community is not lost on me. If it weren't for those incredible moments, I'm truly not sure how I would cope.
Every single incredible person we've encountered who is helping shape Q has continually said in one form or another - "We have to fill, overfill, and keep filling up his 'cup' with language! ASL, verbal, and all forms of communication".
Due to the severity of Quinn's delays, as of right now he's approximately 14 months for communication development. He has been 'hearing' for that amount of time and exposed to ASL for that amount of time. And goodness, do we fill his cup!
We keep being told "It will start to spill out, and the language will overflow".
And we've waited.
And we've waited.
He started to really use emergent sign around early November. This was less than a year after beginning ASL services and buckling down. Very impressive. His receptive (meaning what he understands being signed TO him) is greater than his expressive (meaning what he signs to others as a request or communication).
About 3 weeks ago, we went to Wal-Mart for a few basics after our move. I walked Q through the toy aisle, and there was a big flashy firetruck.
And there it was, an explosion of sign. SO fast! "Mommy, want, need, car, need, want, please, please, play" is all I caught. His hand forms were perfect and practiced.
I did what any normal mother would do. I cried, I squealed, I hugged him, and I handed him the $35 truck. Then we signed 'Happy, Yes, go home, play' and more!' I opened the truck right in that aisle, and likely would have attacked any employee that gave me hard time about it.
Then the babbling began.
Q has said some form of Ma/Mom/Momma for awhile now. (Thank goodness!)
Recently there has been a few Daaaaaaad with low vowel verbal noises. Q has roared like a Lion (along with the sign!!!) and had a few other intermittent things.
Last week, when our Sign Instructor was present, Q decided to say 'NO' VERY clearly and concisely. Then it became a game. Commence all adults crying out of happiness for hearing 'No' (the irony is not lost on me...), from Quinn, and then his joy at hearing himself and repeating it accurately!
Since last week, we have heard an incredible amount of different sounds.
And yet we still wait. And we will wait some more.
The thing is...I've waited my entire life for Quinn.
After being told we couldn't have children and being referred to Dartmouth due to my anatomy, and having giving up on a piece of me that felt incomplete, we were suddenly complete.
I look at all of our hurdles, and sometimes I think Q was given to me because I'd get to keep my 'baby' a little longer.
He is a precious, priceless, and perfect gift.
I will wait several life-times for this explosion, and I will keep doing the utmost in my power to ensure his growth. We've already relocated our lives in order to provide for him. Watch out world!
I'm also driven to help others like Q. On a local level, on a state level, and on the national level. He has every right for full access to all communication. He deserves communication - in whatever form he prefers - and he deserves to thrive.
I know I'll make it happen for him, but it needs to happen to all children regardless of any other socioeconomic, health, location, or any factors. Children also need a case manager once diagnosed that communicate across ALL platforms that can embrace the family and the chaos that comes along with it.
It's hard enough raising a little that doesn't have additional needs, and this opens a Pandora's box of unknowns (who do I call, who do I write to, how can we change this, can we get this for our child, and more). The children deserve an expert that's able to educate and inform the family to give them all the facts in order to make a decision for their child.
For reference, an article below that gives a very brief insight into Q's world.
E!
F!
The exhaustion is real - he piled himself under the warm clean clothes from our clothes basket!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3867802/
Word Learning of Children With Cochlear Implants
Children with severe to profound hearing loss come to the task of word learning at a disadvantage. First, they have less total listening experience or time with access to the full range of speech sounds than their same-age peers with normal hearing (Tomblin, Barker, Spencer, Zhang, & Gantz, 2005). The onset of word learning minimally coincides with when a child first has access to sound (i.e., receiving amplification such as hearing aids or cochlear implants). Current Food and Drug Administration-labeled indications do not support cochlear implantation under 12 months. Second, even with amplification and technological advances, access to acoustic information for children with hearing loss is degraded compared with normal hearing peers (Eisenberg, Shannon, Martinez, Wygonski, & Boothroyd, 2000). Third, most word-learning opportunities likely take place in acoustic environments that are not optimal. Even long-term cochlear implant users with more than 10 years of implant use struggle with speech perception in certain acoustic environments, such as listening in background noise (Davidson, Geers, Blamey, Tobey, & Brenner, 2011). Lack of access to acoustic information may impede preschoolers’ building of phonological representations and semantic representations (Lederberg, Prezbindowski, & Spencer, 2000). These factors, individually and collectively, likely influence the words a child with hearing loss learns (or does not learn) throughout the day. Unfortunately, professionals cannot yet sufficiently alter implantation age, spectral resolution, or the full-time acoustic environment for children with cochlear implants to eliminate the adverse impact of these factors.