Like most people, I wear a number of different hats each day. One of my most important roles is that of stay at home mom to a adorable, lovable, silly & sweet almost two year old little girl, G.
She joined our family through the miracle of open adoption. She has the biggest smile, the greatest laugh and unfortunately no communication skills. She spends a great deal of her days frustrated that she can’t communicate (and trying oh so hard to do so) and I share in that frustration. No words, no pointing, no head nodding, just one little intermittent gesture to indicate she wants something and a few random things in sign language. And a lot of tantrums. And whining. Oh. The. Whining. Some of our days are very long.
Her doctors, therapists and early intervention evaluators are not sure what the issue is, but they all agree what it is not – autism. Her speech therapist feels very strongly what she likely has is a combination of apraxia, dysarthria and mixed expressive and receptive language disorder. She also fits in to the “developmentally delayed” category. Having a language disorder can be tricky with other developmental issues, because if you have having trouble speaking or understanding, that impacts social and cognitive development – so it’s hard to really know if she has some delays all on their own, or if they are a result of the communication issues. She makes progress, probably just slower than other kids. We are in the process of getting an eval with a pediatric neurologist, to hopefully figure out exactly what is going on so that we can best help meet her needs.
I find that when I share with people that she is non-verbal and delayed I get a few different reactions…
1. Oh she’s fine, you are just comparing her to your older daughter.
Nope, I’m not. First, my older daughter is seven years older, and my memory is awful. I couldn’t tell you what my older child was doing when, but I do know that my older child was extremely advanced and thus would not be a benchmark to compare anyone to. I’m also pretty sure that my state, in a terrible budget crisis, would not foot 50% of the therapy bill just because child two wasn’t hitting milestones at the same rate as child one.
2. So and so didn’t speak until they were three.
That’s great. And gives me a bit of hope. But almost always when I ask “did they point and gesture?” the answer is “oh yes, that’s how they communicated all of their wants and needs”. Yeah, see we don’t have that. So kind of apples to oranges.
3. You probably meet all her needs so she doesn’t need to talk.
That would be great, but the many frustrated heartbreaking outbursts a day that she goes through kind of say otherwise.
4. Did her birth mother do drugs?
Ah, the stereotypical drug addicted birth mother. I get it. I know why people ask. I know that people have this vision of what a birth parent is like. But it frustrates me. We were very blessed to get to know G’s birth family quite well, and spend the last two months of pregnancy with them. I attended doctor’s appointments, and was there when my daughter was born, healthy and strong with APGAR scores of 9 and 10. We know that they are a wonderful young married couple, with four children who are stretched way beyond their means financially and emotionally, and intelligent enough to know that everyone would suffer if their family expanded. I know that her birth mother would take her oldest daughter to school each morning, via the city bus, just so that she could attend a school with a special program for gifted children. I know what great people they are, what loving parents they are. I know that our adoption attorney said she had never met a more intelligent birth mother in 30 years of practice. So please, when I tell you that no, I do not suspect substance abuse was an issue, don’t look at me like I’m crazy.
Most adoptive parents I know have become extremely well educated on substance abuse during pregnancy, and can probably rattle off the effects of many different substances, from beer to crack to glue sticks, as well as a counselor in a drug rehab. Please know that not everyone who makes the difficult decision to place a child for adoption is a substance abuser, and that birth parents are amazing people. I might even suggest that you check out one of my favorite blogs, Amstel Life. Warning, your view on birth parents could change dramatically.
5. It’s okay if she has autism.
Yes, you are absolutely correct. It is completely okay. Heck, the state would start paying for all of the therapies that we struggle to pay for, and they would even provide more if she had autism. We might know how to best help her. But just because it’s very common and widely talked about right now, doesn’t mean that’s what every child has. Every professional she has seen, and the therapists who work with her weekly, say nope, that is NOT what it is. While she doesn’t speak, and she doesn’t gesture, she is so social that I can’t get her to play on her own long enough to make lunch. Eye contact? All the time. Brings me objects she wants to play with (over and over). Peek-a-boo? A long time favorite. Warm and affectionate with us – every single day. Knowing that she’s cute and amusing and hamming it up to make everyone laugh – that’s her. She thrives on social interactions. And she so desperately wants to communicate with us and is so frustrated that she can not.
6. You should try baby sign language.
I try so hard NOT to be sarcastic and yell out “No way, what a great idea, I would have never thought of that!”. Yeah, we’ve been trying. For a year. She’s funny with signs, she signs things like dog, fan, and other stuff often, but the signs for “more” “done” “drink” or “eat” – that we model at every meal (and have for probably 6-8 months) – those signs we rarely see. So yes, we’ve tried baby signs. And continue to.
7. You should talk to her more.
This is my favorite. No shit, I should talk to her? The hell you say! Yeah, I pretty much put most narrators to shame, doing play by play of our entire day. I get so sick of hearing my own voice that it isn’t funny. Thanks for suggesting I TALK to my child.
I understand that people mean well. I really do. And it’s hard to always know what to say, so they just say what they think sounds right or helpful. I try not to let these responses bother me. I try to stop the really sarcastic responses that roll so easily off of my tongue a bit too easily. But it’s really great when the response is more along the lines of “it must be really frustrating” or “so how are you working with her” or anything that doesn’t imply that the issue only exists in our heads or that we are in denial about why it exists. Most moms know. They know when something is off, something is not right. It’s deep down inside, and you may not know exactly what or why, but you know.
I should also add a disclaimer here that I know G’s challenges are extremely small compared to the challenges that so many families face. At the end of the day we have two very healthy and happy girls, and I thank my lucky stars for them each and every day. Our issues are teeny tiny in the scale of things, and I know that. I just wish my sweet little girl could let us know what she’s thinking, as I see her trying so hard to do so. I am a believer that there are no accidents. I know we were blessed with this amazing little ray of sunshine for a reason, and that she’s meant to our daughter and that we are meant to help her. I hope to soon have more answers to best help her and provide her what she needs. And in the meantime I hope for patience. Patience in figuring out what her 39th tantrum of the day is about. Patience in the process of figuring out what issues she is dealing with and how we can help her. Patience in navigating the health care, insurance and early intervention systems. Patience with comments that drive me up a wall. And patience until I meet my next frosty cold margarita.