The neurologist was fabulous. How he listened, how he interacted with Charlie, the questions he asked, help he offered and everything he said was just what we needed. When he asked if Charlie has a sense of humor it clicked in my head that this guy knows exactly what to look for.
He did some bloodwork to rule out lead poisoning and fragile x syndrome, but said it is pretty clear he is on the autism spectrum. He affirmed my thoughts--that it was likely the mild end, that there is no reason to think Charlie doesn't have a great life ahead of him. The therapies and approaches we are taking are good and he said he'd do paperwork to help us get him into developmental preschool and on the ABA therapy waiting list at Bluebonnet Trails.
He said there were other tests we could do to try and find a cause, but we both agreed that cause really didn't matter. He is how he is and our energy is better spent on treatments. There is no medication, just therapies and the earlier they are done, the better for him.
There have been moments where Charlie was having a particularly good day where I wondered if this was all in my head. There are so many things Charlie can do and does well. But those moments were always followed by the particularly bad days where I wondered if we would survive his childhood.
Having a diagnosis means a few things: that a doctor sees what I see in Charlie, that I have his reports and records to back us up when we go through various avenues seeking help for him.
I'm so happy to have completed this important step, but it's a little hard on mama.
6 comments:
Gretchen I think it's beautiful that you love your children so much. God must of known exactly what he was doing putting them in your life, you seem like a really good mom =)
Hang in there Gretchen. My nephew also was diagnosed with a mild autism-spectrum sort of thing. He's going to be 16 in March. Kudos to you for pushing forward with intervention and treatment, rather than dwelling on what is to blame. When my nephew was diagnosed, there really weren't any resources or support that my sister could take advantage of. Thankfully things have improved since then, and there has been much research in the years since. Although Autism is still such a frustrating enigma, at least there is headway being made with regard to managing it.
Gretchen only wishing you well and hoping for the best on your journey.
I hope you never stop looking for a reason or cause. The cause may modify which therapies you seek out, which therapies will have the most impact on helping your child.
Good luck and hugs!
I'm glad you have some answers and such a thoughtful doctor to help you get more help. Hugs to all of you.
Gretchen, 1/3 of those w/Fragile X have a dual dx of autism (across the spectrum) so it's certainly possible to have both! And there are amazing meds in the pipeline for Fragile X. Some even believe a cure is on the horizon... not sure I go that far but they sound amazing nonetheless!
If it's Fragile X, you'll have an awesome support system which can begin with an amazing conference this July.
Charlie's beautiful and well loved no matter what! That is obvious.
All the best!!
You are such a great mom!!!
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