Last week was the 1-year anniversary of my youngest son Percy’s diagnosis of Autism. This year I spent that evening in a room at my church with six amazing women, leading a training session for volunteers who want to help with the children in our special needs support group. What a positive way to spend the day!
Last year it was not such a positive day. I was looking back through the archives of my blog and remembering all the complicated emotions I felt back then- STILL feel. We have had a lot of highs AND lows since then, but I am happy to report that Percy has made some wonderful progress. His speech, especially the past month, has exploded. A year ago he mostly only said “ball”. Now he is talking in increasingly complex sentences! One of his new phrases is “I Love you”, unprompted. Oh it just killed us (in a good way) the first time he hugged his Daddy & me & told us that. What an INCREDIBLE feeling. He has also started to like to cuddle (when we can get him to hold still). THANK YOU, God. It used to break my heart when he wouldn’t let me rock him. But he has now started to realize that it feels nice… although if he had a choice he would rather cuddle DADDY. That deserves its own paragraph.
I am a stay-at-home mom & some days I find being around two emotionally-charged (we call it “not boring”) children utterly exhausting. I am pretty sensitive myself. Sometimes at the end of the day when Mapman gets home I am DONE, and he takes over. He is Mr. Mom a lot of nights, and even takes care of bathtime more often that not (I LOVE that man). I think Percy may have started to think that I am the babysitter and Mapman is the Mommy. He now prefers his Dad. If Daddy is around and I go to push Percy’s stroller he cries, “No, no! That’s Daddy’s!”, or if I try to unbuckle him from the car seat, it’s “No, Daddy can try it!” Funny use of words, but painful. I sometimes wonder what it is I have done to cause this. Maybe it’s because I spend a lot of my day trying to keep up with the mess the kids make in the house. I do play with my kids, but admit I probably don’t do it as much as I should (show of hands, anyone else feel this way?). Another part of it, I am sure, is that because of Percy’s Autism he prefers routine. We joke that he has “imprinted” on his Dad. I don’t always feel like laughing, though. I want to be FIRST, I want him to want Mommy most, but sometimes I am just too tired to BE Mommy. I HATE this. Actually, that is an understatement. Few things in life cause me as much pain and guilt as this.
Okay, enough. Back to the positive. Percy is 3 and almost 4 months and is finally almost done potty-training. ALMOST. We can’t get him to even TRY to poop on the potty, he asks for a diaper when he feels the urge. Any advice on how to help that along? He REFUSES to sit down & even try. Also, sometimes I have a hard time getting him to wear underwear because that is change, and in the world of Autism change is BAD. Some days it really upsets him. All he has ever known is a diaper. When I DO get him to wear underwear he doesn’t like it if the front is plain & the characters are only on the rear, so he wants to wear them backwards, saying ”NO! Goes right DERE!” Whatever, not a big deal, looks pretty cute, actually. Doesn’t change the fact that I am SO proud of my big boy. I know that potty training can be REALLY difficult for children with Autism Spectrum Disorders.
While we are talking about potty training, any advice on how to teach a 4 and 3/4 year old how to wipe his own rear end when he poops? He is almost 5. It’s TIME, Buddy. Part of the problem is that he fell in the potty once and is now afraid to shift his weight at ALL. His fear has him paralyzed. On a brighter note, his anxieties in general have lessened and disrupt his life less and less. Go Thomas!
On the flip side, a strange occurrence is that Percy has recently begun to have an INCREASE in rigid behaviors. He is finding more & more ways to order his universe, and he doesn’t get his way we take a trip to MELTDOWN CITY. I though as they got older it would DECREASE, but maybe not. We are trying to find a balance between respecting some of his need for routine while also trying to teach him how to be flexible. Some days it is really hard, wondering & worrying what will set him off. Other days there are NO problems. I am thankful for those days!
Even with these struggles, sometimes I feel guilty about how well Percy is doing. I have friends whose children are still non-verbal, not potty trained, don’t show them affection. I feel it wouldn’t be fair to them if I talk about our victories too much. That is a self-imposed feeling, and I know they don’t begrudge me my joy. But I also know it would be hard for them and I want to be sensitive. I am constantly overthinking my words & second-guessing myself when I talk to them, worried I will say the wrong thing.
Actually, Percy is doing so well that some people in his life are beginning to question his diagnosis. I have mixed emotions about this. I don’t want to unnecessarily label him, but I am trying to be REAL and INFORMED about the challenges he faces. I firmly believe that he is on the Autism Spectrum. Yes, he is on the mild end & apparently in his own little category… he does not fit any standard diagnosis, but has enough autistic behaviors to place him on the Spectrum. I remind people it is a SPECTRUM, and that while Percy obviously does not have Classic Autism he does have many characteristics. Since these characteristics are not always apparent to observers I start to wonder if they think I am overreacting. But Mapman & I see things every day that other people don’t get to see.
None of these things change the fact that Mapman & I love Percy VERY much and feel very lucky to be his parents. He is a smart, creative, funny, energetic little guy who loves us and ADORES his big brother, Thomas. We think Thomas is pretty awesome, too.
One more anniversary this month~ Mapman and I also just celebrated our 6th wedding anniversary. We have been able to find a sitter we trust and have actually had TWO dates in the past month (YEAH!). We are enjoying each other & trying very hard to keep our marriage strong. Happy Anniversary to a wonderful husband & phenomenal father. I love you!
I love all THREE of my guys!
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