You can. End of Story.

endofstoryWhile the focus of this blog entry is on Bryan, the title could apply to Bryan, me and basically anyone facing a goal. Bryan is 17 and is an extremely capable young man. I don’t say this flippantly or casually because there is absolutely nothing casual or inadvertent about where he is today.

About 13 or 14 years ago, when we first learned of speech and language delays, among other delays, before we got the big “A” diagnosis, we went to meet a speech therapist who was considered a guru in dealing with “these kids” and our pediatrician arranged an appointment. Bryan and I went and she was a very business like specialist who asked me a bunch of questions about him and his development. For the next hour, no joke, one hour, she sat on the floor with Bryan and played with him, using Sesame Street character figurines and a playset with slides and activities for the figurines. I sat in the room on the chair holding my breath and and trying not to cry or vomit-again, no joke. What would this woman say after this hour? What was she trying to get at? It was all so unfamiliar to me and terrifying. It was not the first, but it was the beginning for sure, of what would become a long road for Bryan, a long road for our family, and a personal journey for me. After the hour she let me know exactly what she thought. I can remember being in my skin at this appointment as if it was an hour ago. She said here’s what I think: “He’s in there. You will need a tremendous amount of therapy over many years. There is no magic pill; you cannot throw money at this to make it go away. You also need to use his strengths when getting him into schools and programs. You are lucky, he is a very handsome and engaging little boy. If you go to a program, take a photo with you, but don’t take him. You don’t want anyone judging him by his behavior at one meeting.” I listened intently as if the Dalai Lama was imparting the key to life to me. Since this was a long time ago and still very distinct, you know this had a huge impression on me. I feel emotional just typing this and remembering how I felt in the car trying to process all of this info. I won’t take you through the timeline because many of you know it, but it was solid, no bullshit type of advice, including the part about how he looks. It was a crash course in “put your big girl pants on lady, because this journey is not for the weak and you better realize in short order that if you don’t get cracking and face up to reality, you’re screwed”. That’s Janespeak for what went down and for the talk I had and continue to have with myself 14 years later. I am quite fortunate, as is Bryan, that his father was always and is always on board with whatever is best for Bryan, and literally has no ego when it comes to him. Men often shy away from these kids and their issues which can make things worse; but that was never the issue. We were and are still of the same mind when it comes to Bryan: You can. End of Story.

It would be so nice to say that Bryan is now a Phd student at Harvard and has outgrown autism and everything is perfect and rosy. That is certainly not the case, nor the goal. However, the goal has always been and will continue to be that if you work hard and set your mind to something, goals are not only achievable but are inevitable. Kudos are offered up to Bryan and his desire to do well, to learn and to please. What the general public cannot or does not understand is that special needs kids work so damn hard at everything and every moment and task is evaluated. “Gee Bryan was great at lunch last week.” Oh yeah, well how was Jason? I know it’s unfair but imagine your life was one big report card. It’s tough. The one thing I do know is that the most important thing we can give to Bryan is his sense of pride, his sense that he can do and be whatever he wants, without regard to a timeline. And for the record, autism still sucks. Yes, I am grateful for the life lessons, yes I am grateful for Bryan growing up in slow motion and still allowing me to kiss him and hold hands in public, and yes I am grateful for the love and support from some of the most unlikely people. The anxiety that Bryan experiences as “his autism” still thwarts some of his progress and still tests even the most patient of people. His impulse control issues and his language delays still impact him and us regularly. While he feels complex emotions which can be learned from his behavior and some language, his expressive self is still highly challenged. So while I suppose I can and do appreciate the progress, the lesson must always stay in the forefront for both of us. You can. End of Story.

 

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!

 

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.

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?