By way of example…

How do you really explain what it’s like to live with and parent a kid with autism? As you know, if you read my blogs and if you have a kid with autism in your life, it is not easy to explain. I often get questions like ,”does he understand ….?”, “is he high functioning(whatever that means)?” “how does he express himself?”  So I decided rather than try to describe what it’s like I thought giving every day examples might be more illustrative. Of course Bryan is one kid with autism and his presents itself in its own unique way. One thing that I have always found interesting are the growth spurts. Not height but functioning. It never seems that one thing happens, but rather a cluster of good behavior, a cluster of good language, or a cluster of independence.

Here goes with the examples, I divided them into categories to keep my train of thought more organized:

Language-When we were getting ready to go to Disney, I talked to Bryan about the rules for the trip. He does well when he knows the rules and I guess managing expectations really works well for everyone. I told him there are 3 rules: 1. No hurting Jason or me, 2. No screaming-side note-Bryan’s most favorite thing to scream is “I love you”. That poses a huge challenge-do you want to say please stop telling me I love you? No but at a lower decibel would certainly be appreciated. Ok and finally, and most importantly to manage anxiety, 3. You do not have to go on any rides you don’t want to. The last one, while conceptually easy for him, from a language standpoint was very tricky. You see, I ask him to tell me the rules, the first two are very easy for him to repeat back. The third one presents all sorts of pitfalls. He has to get the order of things correct and the pronouns, etc. It usually ended up as “If I don’t have to go if I don’t want to on a ride” or some sort of jumbled up version. Hmmm, what am I an amateur here? This needs simplification. The replacement I gave him was “I can choose my rides” or “I don’t have to go on any rides.” Much better, much easier and less stressful for him when I pose the question. It’s more important he understands the concepts, but I do like to know he can articulate them too.

Also with language there are triumphs, while on the outside looking in may appear so small, so insignificant, yet are so huge when language deficits are present. Last night Bryan said he wanted to take a bath. I said “ok, are you going in my bath?” He said, “no I like my bath better than yours”. OMG I had never heard such a thing before. He made a true comparison and used the right language to do so. I almost called his speech therapist but then more kept coming out. He was putting away his laundry and he found some underwear in the pile that belonged to Jason. He took the underwear and went into Jason’s room and said, “Hi Jason, these underwear are yours, not mine, put them away Jason” (ok he’s a little bossy, where does that come from?) Another great use of language. So small, yet so great. I was in our laundry room and folding more laundry and just peeked around the corner to catch Jason’s eye. He gave me that twinkly knowing glance; the one that let’s me know he loves Bryan too and gets it.

Today I was driving with Bryan home from seeing my mom. I was really tired today and a little irritable. Bryan had been sort of bugging me with lots or repeating language and he knew he was making things worse. It’s tough because the more upset I am or annoyed the more anxious he gets which leads to more frustration for both of us. So we left my mom’s place and we were driving home. Bryan said ” I feel overwhelmed”. NEVER have I heard anything like that. I asked why he was overwhelmed and he said because you’re upset with  me. So I thought to myself that I was never so happy to be annoying him if annoying him revealed such a great use of language. However, I did feel like crap that I was stressing him out. We drove a little further and then he said “what is autism?” At this point, I looked at him and said “why are you asking this Bryan? What do you think it is?” He said “I think it’s when I laugh too much.” Not really a wrong answer. Bryan is known for seriously inappropriate laughter. If Jason is mad or I’m angry he starts to giggle. And then starts to really laugh. Sometimes it’s good and makes us laugh too sometimes it’s maddening. I then explained a lot of stuff to him about what I thought autism is, but truly his definition was pretty damn close.

Independence-On any typical day, Bryan will unload the dishwasher. When they are home with me we have to run it practically every day. When they are at camp for 6 or 7 weeks I think I ran it twice! However, the level of effort Bryan puts in is amazing. Last night he loaded dishes from the sink into the dishwasher and went to put the soap in. He brought the almost empty container and said, ” we have no more dishwasher soap.” I told him we did and that it was in a green container and he proceeded to put the soap in and then take the old container out to recycling. He then emptied our kitchen garbage, replaced it with a new bag and took out the rest of the recycling. All of this was done properly, and without my asking. He then made his lunch and yelled at Jason to take his lunchbox out of his backpack and for Jason to clean the litter pan. I had already asked Jason to do this about 3x. It’s almost hilarious, but it is so truly joyful to watch him do these tasks so freely, effortlessly and with great pride. love.

Behavior-I think this may be the hardest category to show examples of that will resonate. If you can imagine that your kid truly cannot be quiet and that will drive you insane, even though you know language is so important. It used to be I could ask Bryan to be quiet for a few minutes and he would last about 3, then about 5, then about 7. We are up to about 10. I  bet you are thinking this is nuts, but it really is just the nature of the situation. To live with someone who is constantly talking and talking about stuff from 3 years ago or stuff that is so out there, you can get frustrated. He will tell you things like “I said something mean to grandpa 4 years ago” out of nowhere. Or so and so is old or so and so was mad at me on Sept 28. The good is the control we are now seeing to be quiet when needed and to reel it in.

Just a bunch of examples to let you peek through our window!

 

Plug it out!

bellsLanguage deficits are extremely frustrating, not only for the person trying to express themselves but for the listener. Over the years I have learned to speak Bryan and interpret many of his sayings for their real meaning. Some cute funny things are like this: Bryan always empties the dishwasher. In the middle of emptying it he will say, “there’s a lot of dishwasher.” This means the dishwasher was very full and had a lot of dishes. Or he comes up with silly stuff, like instead of unplug he says “plug it out”. Or he will get some things backwards. He will say to my dad “you’re my grandson” and then we correct him and he says, “I’m your grandson.” All in there, just not always the way you expect it to be. Mostly a good thing.

The hardest thing for many kids with autism, and Bryan in particular, is the exchange that takes place in conversation. One person asks a question and the other person answers. Very very basic, but this essential structure of conversation was what led me to the conclusion something was wrong in the first place. Go back to when Bryan was almost 3 and I took him to the zoo with a friend. He knew the sounds the animals made, but did not truly engage. My friend and her son, a few months younger than Bryan, were having conversation. He was asking questions and answering questions. Not Bryan. Driving home in the car I asked him if he liked the elephant or the tiger and he said nothing. No answer at all. Hmm. As time progressed and tons, I mean tons of speech and language therapy which he still gets today, he started to answer some questions. It was fairly easy to get a who question answered or a where answered. I think for Bryan those were just easier questions because he knew people’s names and heard us often talk about places we were going and these questions don’t require the same level of thinking to answer.  It also taught me that when you ask him something, or talk to him, you cannot assume he knows the meaning of the word. I had to remind myself that you need to give him the definition of the word  because the nuance or the gist of it is not picked up. Still need to do this today. It really makes you think about how much language is actually learned by inference and not definition. As a parent or sibling it’s something that always has to be in your mind if you want to effectively communicate with your ASD kid.

The key to learning for Bryan is allowing him the time to process. It all comes bubbling up if you give it time. However, a huge thing has now started to happen. Like most Bryan things, it is something that just started happening and I say to myself, wow, this is enormous. So here is the thing; getting an answer to the ‘why’ question has always eluded us. It is so frustrating and so challenging, particularly when trying to get to the root cause of some unexpected behavioral issue. For example, he will get upset at school and pinch someone or kick the desk. If you ask him, why did you get upset at school. He will say “because I pinched so and so.” I will say “No Bryan, that’s what you did after you got upset, but what caused you to get upset, why were you upset”. And he will say ” because I hurt so and so” or “because I had a bad moment”. UGH come on you’re killing me. You know the answer but you can’t tell me. He’s 16 and this has always been the one critical piece missing in having meaningful conversation.

Bryan answered a why question!!!!!!!!!!!!!!!!!!!

Now I know you may think I’m cookoo, but it really is beyond huge. It has only happened over the last 10 days and not consistently, but still!! Bryan loves videos, movies, and music. He particularly still loves Thomas the Tank Engine. It is juvenile, but the tank engines have very expressive faces and the videos often deal with the tank engine’s emotions and their interaction. Thomas videos have been regarding as instructional for face recognition and therefore a good tool for little kids with autism. I will not let him listen to Sesame Street or Barney (and thankfully this does not come up anymore) but Thomas is a different story. We do the voices together in the car and he tells me all about the engines and what’s going on. So a few times recently he has told me that one of the engines was upset. I asked him “why was the engine upset”. I was not testing him, I was really just driving and making conversation. He said “he was upset because he was sick and making black smoke”. I paused a second, realizing the enormity of this and decided to probe a bit more and said “why was the engine making black smoke?” and he said “because he ran over some dirty rocks and it got in his engine”. OMG he answered two why questions perfectly. I seriously choked back tears. I said “Bryan you answered why questions, yay” As I speak Bryan, Bryan speaks Mommy. He said, ” I love you so much” which is his standard answer for anything that he does not know the answer I’m looking for but knows I am very happy. Now I know we are not splitting the atom here, but by my standards, we might as well be. To give you a sense of the enormity I couldn’t wait to tell Bryan’s speech therapist. She teared up and said, “we’ve been working on this for years.” It truly takes a village, I’ll tell you that.

So, I am not going to say this is happening all of the time, but it has happened and the more he exercises this “muscle” the more it will happen. I’ve waited so long to get this type of answer but I knew someday it would come. 

 

 

 

 

Timing is Everything!

There is this thing down here in Florida, not sure if it’s everywhere so I hope I don’t sound ignorant. It’s called the medwaiver list and it’s something you need to get your child with a disability on so they can get some government funding. Literally speaking: Medicaid Waiver Programs allow recipients to ‘waive’ institutionalization and instead choose to direct services to assist them to live in the community. It is administered through the Agency for Persons with Disabilities (APD). I have avoided doing this for a long time because there is a waiting list of thousands and no real money has been devoted to it yet. I have felt guilty about not doing this and I was somewhat pleased to learn that many of my “autism mommies” have not done this either. There is coordination of paperwork and an intake meeting that involves bringing your child. I once went to a meeting about doing this years ago but somehow I felt it wasn’t worth my time. A close friend of ours and terrific advocate recently called me out on this. He let me know it was not ok to avoid the list or not get your kid signed up. So I faced it, went to the website downloaded the application and sent it in. Not long after I received a letter stating that I had to schedule my intake meeting, bring a long list of documentation and Bryan. Ok, I can do this, no big deal. I was feeling proud of myself and grateful to our friend for giving me the nudge I needed. I don’t typically even need a nudge for anything, but it was one of those risk/reward assessments I do in my head so it got pushed down in priority. Bryan and I went to the intake meeting last week. We had a 9am appointment and often Bryan is anxious if he doesn’t know what to expect. However, alone time with Mommy on a weekday morning, without a doctor’s appointment is warmly accepted by Bryan and so he was calm and delicious on the drive to Fort Lauderdale. We were taken right away and we sat with the Human Services Counselor, a very nice woman, in her tiny cluttered office. She went through all of our papers and let us know what was needed as far as follow up paperwork. Then…… she decided to ask Bryan a bunch of questions. Not one or two questions, but many, about 10. Here is the kicker, he answered them all calmly and correctly. Now, maybe for your kid this is easy, but not for Bryan. The questions were not complex, “what is your birthday”, “what is your address, phone number, etc.”. These questions were questions that all teenagers should be able to answer, and I was confident when sitting there that Bryan did in fact know the answers. The issue really is more about whether or not he would be forthcoming with the information, if the speaker would ask the questions slowly and clearly enough for him to understand and how many questions would he tolerate before he screamed or said “no more”. Bryan has a saturation point where he will no longer stay tuned in and when you reach it, trust me, you will know. But on this day, for this woman, who in essence was somewhat gauging his disability, he answered questions easily, correctly and confidently. He is often very soft spoken when answering questions, although quite loud most other times, and for this interview his tone, voice level, were appropriate. At the end she said to me, “he was so well behaved”. Now, the real true mother in me was beaming with pride. I have taken him to dozens of these types of things, interviews, psychologists, speech therapists, etc. where he has not answered or provided an answer that was completely inappropriate. But, the inner comedienne, the inner autism advocate mom in me, was saying NOW you answer everything right? Now, when it’s ok to be “disabled” or where some modicum of judgment by this woman might put your paper on one pile (needs lots of aid) vs. another (pretty good, don’t worry about him) and now you have to be sooooo awesome. It’s just irony and of course the real mom snapped back and felt proud. We walked out, and as always, Bryan put his arm around me and said “I did a great job with the lady”. We got into the car and I took him to school. During the ride Bryan was somewhat quiet. I wanted to ask him some things but he is rarely quiet so I try to leave it alone. I took him to the front door of school and signed him in. I watched him walk away and thought to myself how far we have come, how he senses from me when something is important or when we are doing something for his benefit. He knows that if Mommy takes off work to take him to an appointment it means it’s important. He also knows time together on a Tuesday morning is special, just like him.

Working the Fan Club

?????????????????????????????????????????????????????????????????????????????????????????Blah blah blah Thanksgiving. I know it’s the best holiday of the year, not religious, for all Americans, etc.  I love the traditional Thanksgiving meal and all it represents in terms of giving thanks and appreciating all you have. For many special needs kids the holidays can cause a lot of anxiety. What is expected of me? I feel like that question is on Bryan’s face very often. Crafting an appropriate response  is the essence of communication. Am I supposed to respond? What exactly are you looking for? Bryan always knows a response is required but the kind of response required can be difficult for him. At holiday gatherings  people are often uncomfortable; there are heightened expectations about behavior from everyone. For me, I try to work on myself regarding Bryan and not worry too much if he is anxious, he is a young man now and for the most part he can hack a few hours at a family event. He tells me every day where we are going for Thanksgiving. We are going to my cousin’s house and he is sooo excited. I asked him what do you like about Thanksgiving. His response, classic Bryan, was “turkey and soda”. Love it! Truthfully Bryan will always be focused on food, but more importantly he will be focused on family. He truly loves when we are all in one place, and he feels the love and knows genuine, heartfelt warmth when it’s impressed upon him. Often kids with autism, particularly Bryan, use associations to communicate rather than actual conversation. What’s the difference? Well if Bryan sees someone he knows he will tell them the last thing that they did together. For example, if he sees some of my cousins he will say, “you came to my Bar Mitzvah”. That is Bryan speak, for hi, how are you? I love you, I miss you,I acknowledge you. You see the conversation starters are not easy for him. However, what is more delightful than seeing someone who greets you with something relating to the last time you saw each other? The great thing about my family is that they dig it. They love his little quips and his trips down memory lane. They embrace his uniqueness and we are forever grateful and humbled by it. To know, as a parent of a special needs child, that your family holidays are a safe place for your kid, well that’s truly something to be thankful for.

Years ago we were at one of my cousin’s house for Break the Fast on Yom Kippur. Bryan was probably around 8 or 9. They always had a ton of people over and it was good for us because there were so many kids around it felt warm and secure for us and the boys. Bryan decided to go swimming in his clothes. Some of our family was very distressed by this and gave us some crazy looks. What I always remember about that was my cousin’s teenage kids. They laughed and joked about it. They did not do this in a teasing way, but more of an appreciation for his cleverness to get in the pool and sort of avoid holiday stuffiness. I was a bit stressed at the time but looking back on it all I can do is think, wow, he would never do that now, he’s grown a lot. And for the kids that were there, well, they just love him for being Bryan. At our celebration next week a lot of those same kids are coming in from college or getting ready for college. They have matured, moving on to the next natural stage of life. While I admit I absolutely love hearing about their new adventures, new friends, and life experiences, it always stings just a little bit. Somehow that, what will Bryan get to experience is always stuffed down there somewhere and I have to stifle the urge to let it surface. I remind myself, that his path is his path and we just have to take it slow. Perhaps a few holiday cocktails and a few good laughs will ease the way. Bryan, however, will not be worried about anything except dessert and what time we are going home. Happy Thanksgiving!

I’d rather live in his world than live without him in mine

gladys

So one of my favorite autism mommies and party planning soulmates asked me to write a blog about something. I have never actually had a request before. Earl and I have had many “there’s a blog in there somewhere” moments, but no actual requests on a topic.
So here goes…Her son is one of Bryan’s best friends. He is also 13 and has good communication skills. His voice changed recently and he sounds like a man, it’s freaky! I noticed Bryan with a little Peter Brady “it’s time to change” squeakiness but he’s not quite there yet. Frankly, I can wait. Ok, back to the topic. She tells him, “I love you” and he says “thank you”. People love to tell us that’s the wrong answer or he’s in his own world, not her son per se, but all of our kids when they give an atypical response. One of our other friend’s sons says the most original things. A few years ago his dad said he was thirsty and needed to get hydrated with a drink. He said, I need one too, I’m lowdrated! These kids have a way of capturing thoughts and language that is very unique but they communicate their feelings. In my house the boys say when they have a cord that they will plug it in or plug it out. That makes sense really!
The point of it is we spend almost all of our energy forcing our kids on the spectrum to live in our worlds, physically, of course, but emotionally; that’s the challenge. I have mentioned before how much I have learned from reading Donna Williams’ books. She’s the 40 something Australian woman who did not speak before age 9 and now has written a dozen books and lectures all over the world. When I read her first book I literally had to pause to sob at times. I kept thinking, OMG, he’s in there; he understands everything we are saying and oh shit, he understands everything we are saying. She really opened my eyes to the idea that Bryan sees the world very differently and how truly tough it is for him every single day just to cope in “our” world. Can you imagine lots of people talking to you all of the time and it just sounds like garbled noise, but these people want a response from you? Can you imagine being asked question after question but you are still trying to decipher what the first question is? Can you imagine living with your family where you hear them talking about you like you are not in the room, because you literally are unable to respond but you understand every word they say?The key for us was to remember that while Bryan does understand everything, we must give him the time to process. Bryan’s biggest challenge is auditory processing. We just needed to learn when he was younger to slow it down. He was still answering the first question when we were on the third. Reading Donna’s books, listening to therapists, watching him, we learned how to approach him in his world. Over time he has caught up a little bit to us and we have watched him mature and grow.
Over the years when we have reached points of frustration, where Bryan’s language was so limited I often felt like saying, screw it, let’s just move to some island where it does not matter. Earl and I have had many heartfelt discussions about, how is it fair to force him to try and work so damn hard to live in our society when perhaps he shouldn’t? It’s hard to explain this but what you witness as a parent is watching your child struggle with every nuance. When I sit with Jason and we watch a tv show, no matter what it is at this point, he can get the jokes, the sarcasm, the inferences. Autism and inferences are not friends. The surface or literal interpretation is obtained but the rest must be spelled out. It’s not because these kids are not intelligent, it’s just that some aspects of body language and communication are not natural for them and are not easily taught by us. A simple phone conversation can be a challenge. In today’s world there are all kinds of scripts and social stories to teach our kids how to handle these exchanges, but as parents we need to remind ourselves that what is a natural progression of learning for our typical child is not the same for our child with autism. Some kids can’t read facial expressions, some can. Bryan can read basic emotions like happiness, sadness, anger. It took a long time for me to explain to him the difference between sad tear and joyful tears. I told him some are sad tears and the others are love cry. I can look at him now if I tear up and he says, ” you love me”. And of course I do.
One of the great things about living in “their worlds” is the slow motion. You get to keep them little longer. Most 13 year old boys would not want to snuggle with their mommies to watch a movie or kiss them. Although I am sure I am embarrassing to Jason, Bryan will hold hands with me anywhere and he is a bit taller than me so I’m sure it looks kind of cute from behind.
As many of my autism moms and dad’s know, it takes experience and battle scars to learn how to embrace their world. This is not something that comes in the first few years. The first few years are for intervention, the next few years are for learning, we are now in the teen years where we are planning for the future. The sky is the limit.

Now you’re talking my cracka lacka language.

When they tell you your child has speech and language delays, you think, ok, we’ll get some speech therapy. Well almost 9 years later we probably could’ve bought a mercedes with all of the money we have spent on speech and language therapy. Not a complaint, just a fact, however I wouldn’t really want a mercedes anyhow. A porsche? I could work with that. The thing is there are always ups and downs with everything. Bryan has truly one of the greatest speech and language therapists now. Her name is Marcia and she is so dedicated to her kids. This woman has super duper credentials (I am a credentials snob admittedly) and she just knows how to get to the kids. She is also incredibly warm and loving and the kids are drawn to her. Bryan ADORES her and so do we. Her give a shit level is so high and I feel such a connection to her and her energy. However, no matter how much we love her and we go 3 times each week, the results are always slow in coming. We know he understands everything we say, but getting him to formulate sentences, ask questions and answer questions is truly the hugest challenge. Recently he has started to speak a lot more. Every full sentence, every question and every credible answer to a question is met with pure joy from us. Last night one of our friends, Chris, came over to watch the Giant game (damn Giants) but both Bryan and I were asleep before he came over. Bryan just a regular night, for me, a very necessary ambien induced coma night. Bryan loves Chris, he is so warm and nice to Bryan. This morning Bryan said “I was sleeping when Chris came over”. Ok, not going to make the grammar hall of fame, but I was so happy. Made my day, spurred me to blog, all good.

Jason is in on it too as well as my sister and Mara, our sitter. When he does or says something new we get sooo happy.  Sometimes you would think we are totally cookoo because we tear up or scream yay for the slightest compound sentence or complete answer. And when he asks a question, you would think they dropped the ball in Times Square! The other day Jason wanted to go on our trampoline after swimming and wanted Bryan to go with him. Jason asked him and Bryan said “First I need to get dressed”. Jason was so thrilled, he said “Mommy, did you hear that good sentence from Bry?” then he turned to Bryan and said “that was a great sentence Buddy”. Priceless. It’s a journey for all of us. On another planet that might be somewhat condescending from a little brother. On our planet, the unconditional love and support of Jason is a bonus better than the powerball.

If you are wondering, “cracka lacka language” comes from Madagascar 2. The Zebra, Marty, is played by Chris Rock ( I loooove Chris Rock). They are in Africa and he discovers other Zebras, which he has not seen before. They ask him to join them running on the plains and he says “now you’re talking my cracka lacka language”. If your children are younger than 10 and you don’t know that, what the heck is wrong with you?