Tuesday, December 26, 2017

Plateauing and Regression

One of the things that almost all special needs parents experience is the frustration that comes with watching your child struggle for months or years to attain a certain skill, only to see that skill plateau or fade away. 

We have experienced this many times with Chelsea, and inevitably, I always wonder if I haven't been doing enough with her, if I am the reason that she isn't making any progress, or if it is because of my actions that she is losing abilities. 

I remember when Chelsea was learning how to walk. She would take a step or two, then not again for weeks. Then after hours and hours of painstaking work, she would take another couple of independent steps. The same process was repeated over and again before the skill FINALLY stuck.

Same thing with speech! At 2 years old, she had a grand total of 2 sounds. Not words. Just a repetitive "da-da-da-da-da" and a high pitched shrieking "Iiieeee" sound. Then came the speech therapy, and the first 6 months were unspeakably hard!

We worked on "mama" for hours every week, at home and in therapy, with me gently pressing her lips together and getting her to breathe out to form the "ma" sound. 

She finally said "mama" independently on Christmas Day, just before she turned 3 years old. Best Christmas gift ever! But then she lost it again, and it was months of more work before it came back. Once it did, other sounds came more readily. 

Now, Chelsea has many more sounds and words than she did at 4 years old, but has plateaued for the last year on speech. She really hasn't gained any new words, and has even lost a few.

I blamed it on myself and listed excuses- with this pregnancy, I have had WAY less energy than before and have been neglecting her "homework" sessions. That her brother is very spirited and demands a great deal of attention.
Seriously my son every day

I also blamed lack of private speech- my husband was out of a job and insurance last year for several months, and we pulled Chelsea from therapy for more than half a year. 

But you know what? I am doing the best I can, and sometimes, we will hit a plateau. But that is okay. We will eventually bounce back, and we will gain other skills in the mean time. 

Many times, Chelsea plateaus in one area of development while she "focuses" on another. This last year, she has regressed in speech, but also gained some significant fine motor skills and reading skills. 

I have to keep reminding myself that it is okay, that progress in other areas will come, and to not get hung up on Chelsea's deficiencies, and instead focus on her achievements. 

I also have to remind myself to not throw in the towel any time we hit a plateau or go through a regression. It is easy for me to start wondering why we are paying thousands of dollars each year when there is no progress seen at all. 

BUT- I believe in Chelsea! I know that even when she is taking a break from learning to say new words, she is working really hard on other things, like learning to jump, or write her name, or accomplish independence through self-help skills. 

Thursday, December 21, 2017

Talking About Gifted vs Special Needs

Most of this blog is dedicated to Chelsea, my daughter with SATB2 Associated Syndrome. But very occasionally, I will write about my son. This time, it is a little of both, and why people are allowed to talk about one child's abilities, but not another. 

Chelsea, my SATB2 girl, is doing great. I have dedicated hours upon hours, every day, for years, to teach her to communicate, use the potty, do seat work, even how to make a peanut butter jelly sandwich and read some words! I am very, very proud of her. 

When I tell people about Chelsea, almost always, the response is positive. "Wow, you are such a good mom!" or "Chelsea is so lucky to have you." or "She is doing so well! You must be so proud of her!" When people talk to Chelsea, they tell her how smart and pretty she is. And we love it! It means the world to hear that all of our hard work is worth something.

Then there is my younger son. He is doing great too! I have dedicated as much time as I can to him each day, but because of Chelsea's needs, he doesn't get nearly as much help. But even so, by age 4, he learned to read, write, do math, and can memorize everything and anything with uncanny recall abilities. He is what you would call "academically gifted." I am very, very proud of him!

When I tell people about Ryan, almost always, the response is pretty negative. My observations are downplayed, ignored, or I have eyes rolled at me. "Well, all kids are gifted." or "yeah sure." or "Ryan can't be gifted, since you help him at home." I instantly get labeled as one of 'those moms'. 

I have learned to not be very vocal about Ryan's abilities, since people hate hearing about it. They usually think I am lying or exaggerating.

Being gifted means that Ryan struggles with some things, like controlling his emotions. He has MASSIVE meltdowns. Being highly developed in one area, but not in others, is "asynchronous development". It comes with having his own kinds of needs. Many of those labeled "gifted" or even "genius" are completely oblivious to the simplest of things.  

People don't mind me talking about Ryan's meltdowns. But they don't like hearing about how advanced he is academically, even though it is perfectly acceptable for other parents to talk about how their child is advanced in art, or sports, or music. 

With schools, I advocate fiercely for Chelsea to get an education that is appropriate for her. But when I inquired about the gifted programs offered, I was told that most gifted children are "teacher helpers" and assist other children in the classroom. That is great, but what is RYAN going to learn? 

So, I ask:

Why is it acceptable to praise the parents of a special needs child who dedicate hours each day teaching their child to do new, basic things that the special needs child is not able to do quite yet, but then we roll our eyes and say it is being a tiger mom when a mother teaches her child to do new, advanced things when that child is able to?

Why can a mom whose child excels at baseball talk freely about her child's abilities, but the mom whose child is exceptional mathematically cannot without fear of being ostracized? 

Why is it acceptable (albeit difficult) to fight for services for my special needs child, but I get labeled as an impossible parent when I want an appropriate education to challenge my gifted child, instead of him reviewing concepts until peers catch up?