Today, our best pal Lindsey is back. You need only search the Guest Bloggers Tag to find many other posts she has shared with us. Today she speak directly to my path.
Today I was having a chat with one of my favorite homeschooling mamas, she was feeling, in some ways, a bit of defeat. Her son is special needs, but they haven’t figured out a definitive diagnosis. I think any of us who have special needs children? Have been there. I remember just wanting to be justified- I remember thinking, “Something is *wrong* with my son, why can’t anyone tell me what!” I remember doing everything I could for him, and getting him tested for Autism, and then? I felt better, “HA! I TOLD YOU!” But, the truth is? His diagnosis? REALLY didn’t matter so much.
You can slap a label on anything, children included. I am not AGAINST labels actually, because they help in school atmospheres, they help get help for our kids, but I certainly? Leave the labels to the professionals. For me? My middle son’s “symptoms” are what matters most.
So he has Autism. His technical diagnosis is: Autism Spectrum Disorder, Severe Sensory Processing Disorder, probable ADHD. You know what is kind of funny looking back though? I waited 6 months for an Autism test- on a waiting list, yet at the first MENTION of Autism by my pediatrician? It gave me a starting point- and I just flew with it.
I remember getting him in speech RIGHT away, he wasn’t speaking at the level he should be, I had known that but a previous pediatrician had essentially told me to stop comparing him to my other son because all children develop differently. Anyhow, once I had the tools, and the referrals I called the same day, within a week someone came to my house to assess my son. He didn’t “have Autism yet” on paper, but I told them based on the research I had done? I was fairly certain. The therapists were OH so careful to not say he did, or he didn’t fit the criteria, “I’m not saying he has Autism, but this behavior is common among those who have Autism, and here is how we would recommend you work with him.”
I did. I worked with him like crazy, and you know what? *TECHNICALLY* – He didn’t even have Autism- yet. Not on paper- not solidified in my mind- no proof- but yet? I was treating the ‘symptom’, in this case the symptom was that he lacked verbal skills. I was doing all this? And not even realizing it, because I was still focused on the diagnosis aspect.
If I could go back, and tell myself ONE thing, it would be, “Stop googling ‘symptoms of Autism’ and start googling the behavior you see!” Why? Because the diagnosis of Autism? Did NOT change my child. If I had googled the “symptom” or behavior rather, I would have seen how to simply address that ‘issue’.
Fast forward almost 6 years now and an official diagnosis. Sometimes? I just laugh at how much my mentality has changed, the constant hoops and loops of trying to get inside my son’s brain – figure out the why of his actions since he lacks the verbal ability to express them. He sure can talk now though- but putting his feeling into words is still a real struggle.
I am constantly having to translate, in many ways? It comes easily and naturally. Sometimes? I get stumped and reach out to my closest friends who ‘get it’ for advice. Those times, where I can’t translate myself? Are incredibly disheartening. What am I doing wrong? Why can’t I get this? What the heck is going on inside of him? It’s the most extreme level of frustration, and if I don’t figure it out for a long period of time it can lead to quite a depression in some cases. I usually step back at that point, get back to basics, cut out anything that isn’t needed and start at the base. As I build up? We usually find that there was a loose brick in the wall, and if we hadn’t fixed it? Everything would have topple down.
Notice I said, “We find.” WE, my child and I, this isn’t an “I am the parent and should figure this out” kind of ‘problem,’ this is a, “Okay kiddo, you have my undivided attention, let’s work this out.” Kind of thing. And when I listen? I have to translate. Almost ALWAYS the behaviors are not defiance, or even anger, MOST times, the behaviors? Are pure frustration. Imagine you are in Spain, but you only speak English. You are hurting, and you keep telling people why and they just look at you. Over and over you tell them yet they aren’t helping you like you think they should. How would you feel? Then you meet one Spaniard, he speaks very broken English but is able to deduce the gist of your pain, and then he helps you.
This is what it is like being the parent of a child with Autism, at least for me. He is always being perfectly clear- but I sometimes? Lack the ability to speak his language, and my broken dialect makes it harder for me to figure it out- but with enough faith, and enough effort? We get to the bottom of it, and afterwards? I understand his language a little bit better, until next time.
All this brings me to the story of my chat this morning. A friend of mine was feeling a bit frustrated with her undiagnosed special needs kiddo. I know she feels that a diagnosis would at least give her some understanding. I know she feels this way – because I was there. I have since learned that my son’s diagnosis of Autism, just enables me to explain him to other people, who still, won’t ‘get it’. To me? He is just like any other kid, but I have to work a little harder to raise him because, he doesn’t run on the same batteries as the others. Just a different “model” if you will. One that makes me think a little harder and keeps me on my toes.
One thing, he will not do? Is sit still. I home-school and I often get frustrated because I feel he is behind. I feel he is doing work beneath him. Both my older children were in public school, I know how it all works, I pulled them out because the school wasn’t helping either of them. I know, that if my son was in Public School right now he’d need a constant aid, and he would be put in a special room because there is no WAY he’d keep up with the 1st grade pace. I started really getting worried- he couldn’t add, and I didn’t understand why! I worked with him and it appeared he couldn’t sequence, he couldn’t add, and he didn’t know his numbers. I freaked. Maybe I’m not doing so well at this, maybe I shouldn’t have pulled him, and maybe I am totally screwing this up. I quickly purchased over $40 in computer software, because that is what he prefers to work on. I loaded it up, I told him he had to sit there and do it.
He mastered all 4 games, in a matter of 30 minutes, clicking answers before the question had even finished verbalizing itself. Adding, Subtracting, matching, sequencing, and more. All of the things I didn’t think he could do.
Then? I realized- those worksheet? I was reading to him? The fact I was expecting him to do the work at the table? Was too hard for him. It couldn’t keep his concentration! I also realized that this is why I decided to home-school, so that I didn’t have to expect conventional methods of teaching to work for him.
Now we do only 10-15 minutes of writing a day. 3 worksheets. Split up, one at a time. He needs the fine motor skills, but I am much more worried about him knowing how to add, than being able to write the answer, at least at this point. We’ll get there, but since writing takes SO much out of him? I’d rather focus on the skill itself. Spelling on the computer, reading, and doing math is good. We also play word bingo, phonics bingo, math bingo, and other toys that go along with our subjects.
I was trying to find a way to explain my reasoning of this. How “table time” can be a bit stressful for kids with special needs and here is what I came up with.
We have all had to fill out important paperwork, such as insurance paperwork. We know all the answers for the most part, so it’s not hard in that aspect, but we do have to think hard on it. We sit down, we begin to fill the forms out, our brain is going, then a child comes up with the, “Mom, Mom, Mom, Mom, Mom….” And we react by 1) Ignoring the child for a moment all while he/she is still highly distracting. 2) We react with frustration, “JUST A MINUTE!” Or 3) We get up, take care of the child and then sit back down, when we sit back down? It’s work to get our brain back to where it needs to be.
We are capable of filling out the forms.
We know all of the answers.
So WHY? When we are all done and stand up? Does it feel like we breathe a giant sigh of relief, why does our brain feel so tired? Why are we seemingly more irritable than we were prior to this ‘easy’ paper work? I mean after all- it should be easy right? We already know all the answers.
For children with ADHD or Autism, table time can be just that. They know what the number 5 is. They know how it looks, but even just sitting and working to write it? If they lack fine motor skills, or are slower at using their fine motor skills? Then it becomes just like that insurance paperwork. You know the answer, but it requires maximum concentration.
Every sound in the house from the fan whirring, to a distant TV, to the hum of the lights, the clang of the dishes as you clean the kitchen; all these things? Are the same as the, “Mom, Mom, Mom, Mom,” factor. Taking a break? That only works if one task is done, stopping in the middle of the task, sitting back down? Your child is doing the, “Okay now where was I?”
I am not saying that table time should be ignored, but short quick intervals with sensory breaks (when one task is done) can do wonders. Finding alternate things that will teach the same skills is by far the best. For writing, I like the sensory mats, where you trace a letter or number in the gel using your finger. Doing math in shaving cream is SUPER fun! Each child is uniquely different, but for those who have attention issues, or occupational issues I think we have to constantly adapt our *typical* mindset of methods, to what will work best for that child.
We may not speak their language fully, but we are more capable of translating than anyone else. We have to work hard at it, we have to constantly put ourselves in their shoes, and in the end? Never be afraid to say to your child, “I want to help you, but I don’t know how. Can you tell me how I can help you?”
You just may be surprised by the answer.