Truly, I am thankful for the diagnoses, I truly am. Because once again, I have been vindicated. The sick feeling, the feeling of being brushed off, of feeling like a nuisance, like a paranoid, hysterical woman, is now gone. No more. The experience I had with the first paediatrician is something I hope no mother with anxieties ever goes through. You know when you feel all those feelings during a doctor's visit AND the doctor talks down to you as if you are dumb, lack common sense
Then I saw a different paediatrician who had concerns too. But then I thought, "What if a different paediatrician would also brush me off like the first one?" I started thinking maybe it was just a fluke.
Until we saw the paediatric neurologist yesterday for an assessment. The words I will take away from that visit are, "We need to intervene." and at the end of the session, "I don't know what the future will be like for him, I don't know how longstanding the problems, nor if the gap between him and what's normal will grow but let's begin..."
I was sitting there feeling THANKFUL. Thankful that that feeling never went away but instead was strengthened. Thankful for the friends who listened to my distraught voice notes did not accept what the doctor said. Thankful for the friend who kept checking on us, asking me how he was, who gave resources that actually solidified my gut feeling. Thankful for the friend who looked around their 'friends' list for help. Thankful for my special needs mom friend-sjoe, long title-who gives suggestions and asks her son's therapists for more ideas. Thankful for the friends who reached out to me who also have children with different diagnoses. Thankful for the friend who would bounce ideas off with me, even doing weird and wonderful measurements of angles when she and I also noted one of the physical abnormalities the neurologist noted. Thankful for the friend who is positive without being patronising or acting as if the problems don't cause much pain. Thankful for the mom I met who put me in touch with a friend who suggested the neurologist... Just thankful.
What's the next step?
We need to see an audiologist.
A physiotherapist will come to the house to start therapy on his gross motor delays -if her workload isn't too heavy. Dr suggested her because she also works with sensory processing disorders, which he is exhibiting.
We need an occupational therapist too once physio is done. (Yes, people do it concurrently but our budget is not able to stretch that much)
We need to start testing but the State doesn't do all tests so we're starting with thyroid tests. Dr's reasoning being that a dysfunction there can cause his issues and also we can treat a thyroid problem so might as well either rule it out or work on it, whereas if it's one of the other issues, test results will give us a cause but not anything that can be fixed based on the results.
A brain scan depending on how he responds to therapy.
Will see the neurologist in November unless he regresses (loses more skills-he's stopped rolling from tummy to back), unless he gains more unusual behaviours, or unless physio tells her he needs other testing or intervention before November.
What's her feeling regarding what he's dealing with?
A few autism markers.
A definite developmental delay
Sensory processing disorder
A possible genetic syndrome-this is the one the State doesn't test for and because it's not like you can fix a genetic syndrome, so we'll leave it till last.
So that, dear readers, is the plan for now. We still have a long way to go and lots of time to be spent helping our little boy flourish into the best version of himself that he can be.
For now, we enjoy his smiles, and the abilities he does have. He's more than just the deficits, but we can't ignore that the deficits will rule a part of our life and his. So if this blog becomes about the deficits, don't see it as the full story, or that we're living our lives moping about what he's not. We're not. We're just focusing on what he's 'not' (in terms of therapy, not our moment by moment experiences) so that we can help him gain as much he is able to gain.
Life is made up of breakfast, lunch, dinner. Reading books. Changing diapers. Normal stuff. And that, my friends, will not make it on this blog because that's just boring! And not helpful to those who might come across this seeking for ideas and confirmation of THEIR gut feelings.