I often look back and think if I could do something different what would it have been? I really regret not having more "digital" pictures from the minute Matthew was born. I also wish I had maternity pictures as well. During that time, I preferred the old 35 mm camera. Sure there was digital but I wasn't it to that back then. So I do have plenty of picture albums of Matthew because of the 35 mm. I haven't been very good about printing those out lately since I have the pictures on the computer or my external hardrive.
Another regret is that I should have documented him better back then. I should have taken video's about his autism traits when we first noticed it at around 1 1/2 years and even the weird quirks I should have picked up when he was an infant. I wish I had the videos to show his now communicative and lack of social state at that age.
Not that I can't look back and see how far we have come, because we really have. I think that would have been great to talk about how I was feeling at that time so that I have better memories of it all. I think when you become a mother, you can't remember things as well because you are trying to remember the things for your child (make sure he brushes his teeth, makes sue he gets his homework done, make sure he has clean underwear on).... It never ends.
I know I do have documentation on this blog that show what I was feeling at that time of my life... So that is 1 good thing. Perhaps, Matthew can read through them some day when he is older as long as this blog is still there.
As far as interventions go, I don't know if there is anything I would have changed. I think I did what I could. Now that I am in nursing school, my instructor asked what I would suggest nurses to look for if they were dealing with a child with autism.
I basically told her how "alone" I felt. I felt I was his only person up to bat for him. I feel like I had to do it all. I had to take the initiative to find out everything and get him labelled. Not once during all the well child visits did I have a nurse or doctor help me with this. I felt like I had the weight of the world on my shoulders. The only time I felt like I had help was when the PT lady that was seeing another kid at Matthew's daycare, told me that she didn't think something was right. Never did anyone say that during any office visits. I wish the doctors and nurses could have been more in tune to his developmental milestones so they could have caught it. I felt it was a fight to get them to see what I was seeing. I had to take him to the LEND clinic, they say developmentally delayed. But did they really do much after that? No.
I took him to the baby clinics for more evaluations. Again... developmentally delayed, just check back in 6 months. Bullshit. Lets get stuff done!
I got him into Birth to 3. I took him to school every week so the teachers could work with him. 1 hour a week really wasn't enough but it was something. We all know how much that helped him.
I had him put to sleep for the BAER test.. (normal of course). I found a peditrician. I asked him point blank if he thought it was Autism. That was the reason for my visit. He ran a bunch of fancy genetic tests.... negative.
All and all, it cost me a lot of money. South Dakota doesn't cover Autism/Developmental delays under insurance.
By the time we got Matthew talking, I had him go to an ENT specialist, I thought he was somewhat deaf! Again.... normal.
If it wasn't for my advocacy, I wonder how far into the cracks that kid would have slipped. Thank goodness I was a parent that gave more than 2 cents care about my kid.
I found the Family Support program at state level to help me. They referred me to the local chapter after awhile for personal support. I gave it my last shot to have him rechecked by a different specialty children's hospital and that's when I finally found my diagnosis.
I felt like I had to jump through a lot hoops to get there.
So I guess if I could change 2 things.... it would be to have documented more digitally and with video so I can look back to see what things were truly like back then; AND to have found help that could have been more of advocates on my side.
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