Picking Our Battles & Pulling in our Claws!

There is a kid at school with my son who is having lots of challenges getting the right class/program placement. My son is in a traditional elementary and he is mainstreamed with support in to a general ed classroom all day. Her son, who is much higher functioning than mine, has been in a special day classes because he has behavior problems and has not been able to keep up with the general education work. She has been working to get him into a regular classroom for at least part of the day, because he is not doing well in special ed and his negative behaviors have been getting worse. Apparently she was calling the school and asking for an IEP, and it took a long time to get one scheduled. Then she finally got the IEP and she asked that he be put all day in general ed with an aid. They didn't want to do that and after weeks of back and forth the school agreed to put him in general ed for part of the day to see how he would do. She began asking every day "did you go to the other class today" and for weeks he said "No". So she called the school and they said it would happen and day after day it did not happen. So she went to the school, went to the room and asked "What the heck is going on, he is supposed to be in gen ed and he's still here", the teacher replied "I didn't have an aid to walk him over". She lost it, grabbed him and took him to the other classroom herself. Where she then sat and waited until class was dismissed. For the past week they have been taking him to class and things seem to be on track! Yippee.

Today she called to tell me that she was thinking about calling another IEP to clarify that they had to get him an aid so he could go with the other kids on field trips. There was a field trip today and she really wanted him to go, but was upset. Apparently the Assistant principal had told her he could not go on Field Trips, unless someone was with him and since he did not have an aid, he could not go unless she went along and would that be okay. She called me to get confirmation that she had made the right decision. I didn't think of it in terms of right and wrong, rather in terms of what might work best. So, I asked if she was available, she said "Yes". My thought was she had just made great progress by getting them to get him mainstreamed everyday and since the field trip was today and she wanted him to go, and she was free, just go. I suggested that it would show the school that she was working with them and that gesture could go a long way in the future by helping the Assistant Principal feel like they were working together. And in the real world they have not gotten to know her son yet, and they don't know that he will do just fine, so in their way maybe they were just looking out for his safety. So go and have fun!

She hesitated and then said, "Yeah, I think I'll go".

The truth is each of us has so many battles that we are almost ALWAYS ready to fight. It is so hard to put down the gloves because it seems we are fighting for one thing or another all the time. Big things, little things just fighting and it becomes our expectation. After years of battles (many only perceived battles) I'm learning that not EVERY SITUATION has to be a battle and everyone is not indifferent, just different. Yes, some folks really don't care about my kid, some folks just don't have the knowledge, some are afraid of the unknown, some are angry with the systems they work in, some are having a bad day and others have been given a mandate that they are trying to enforce because that's their job.

I've always known this in my brain but getting this message in my heart when I want so desperately to care for my son and the only thing I feel I have control over is getting him what he needs, is just not easy. After years of crying, getting angry, making myself sick and feeling betrayed by the system I am learning that I don't have to begin every interaction, where I need something for Nicky expecting a fight.

I'm learning to pick my battles and make fun of myself. Last week I went into a meeting that I knew had the potential to bring out the ferrous mother bear in me and I was determined not to let that take over. Because I have seen how defensive it makes people and how much my energy contributes to the negatively charged atmosphere. So, I was determined to stay calm and let other people talk, try and hear their side and wait to see if "they" took on solving the problem. Then it happened one of the people said something and my brain hear "them is fightin words" and I felt my stomach go into knots. I was able to stop myself (if not the look on my face) take a deep breath and then I said "Okay, I feel that mother bear thing happening, let me take a deep breath and put my claws back in" and I laughed at myself and the meeting when on and I got exactly what I wanted.

There is hope, we do have choices.

Notes to myself and other mother bears...

• Remember that everyone comes to the table with different perspectives and experiences, rarely is anyone really trying to hurt me or Nicky, even when it feels like it.
  
• Remember to keep good notes and records so they can speak for me, when I'm overwhelmed, JUST THE FACTS.
  
• Choose my battles - a lot of what happens will not be right from my point of view - but I have to remember they will not all have the same weight or importance and I need to manage my energy and choose my battles not just for Nicky but for my own health.
  
• Go into meeting knowing that people will defend their positions, that's there job, but I can choose to stay calm and focused on the issue.
  
• Being mad at all the people who don't do what I think they should do, only makes me mad,and the mad doesn't help Nicky, it just hurts me.
  

• Build alliances with who can help me when it seems I can't help myself.
  

Geography or Go Carts...EQ and IQ is for Autism Too!

Even if Nicky is the best computer whiz on the planet if he can't ask for directions, say hello to people, listen to what they say to him or understand danger he won't be able to live independently. This is now my biggest goal now, not how well he does in the Open Court Program. Our kids have to be out in the community and we have to get the help to teach them how to survive or none of us will have a life.

If I understood this 7 years ago I would have put my focus on finding ways to extend his school day with the support of a therapist where he could work on play and homework EVERYDAY. I would look to find programs in my community where he would be supported by a team and even though there was turn over it wouldn't be all at once, so there would always be the consistency of the place and some of the people - he would never drop to zero. Then, I would then have worked to find a person who could be with us every weekend – a therapist who could take Nicky everywhere with out without me and my daughter; to the park to play with kids, to the roller rink to skate, to the zoo, all the things that all families do – while teaching every moment. This would have made more time for me and my daughter and it would have been a consistent plan I could rely on. Then I would had added all other therapies and programs that were available to me. All the time knowing that the constants would be school and my weekend support.

I know that despite the best intentions of many, few will be able to deliver consistently on all counts as needed. If you are getting 80% consistently you are doing good and stay there. I have found that with all of it’s problems – if you can get a good team – the support from your local school will be the most consistent program we can get during school age years. So focus on getting a great school program. This is where it can really pay to build relationships with your home school and find out exactly what your child needs and ask the school for it. That will mean getting outside opinions of what your child needs, get reports, get recommendations, hire experts, and be sure to understand "best practices in autism". This is not the time to be afraid of asking for what you need and going all the way to due process if necessary. I have yet to see a parent go through the due process with a plan that was legitimate and supported by experts not get most if not all of what they needed that the school district has the ability to provide. But I have seen families be denied because they did not prepare and fight the battle. So, this is the battle that can pay off for you and your entire family.

Notes to myself and others...

• Review programs often to see if they are really moving our kids toward independence

• Consistency cannot replace quality. However consistency is critical for a successful outcome. I have learned that the best quality if not delivered consistently will not get the best result.

• When ever possible get outside evaluations that can be given to schools and service providers just in case there is a disagreement about diagnosis or needed services. Check with your local hospitals, clinics or physicians to find out who can do the evaluations.
  

• Get evaluations from people who have expertise working with children with autism and
  routinely do the type of evaluation you need.
  

Getting help for Nicky...if I knew then what I know now

The reality of Intervention

Nicky’s intervention program is not working. This means he has lost his a routine, he is not moving forward, his schedule is different so his frustration tolerance is almost zero. When his routine changes he gets frustrated because he does not know what to expect and he has more free time, so he does puzzles, spends more time on the computer, goes out with mom, reads more books (all the things he likes to do) and doing these things escalates his repetitive behaviors and he begins to want to ONLY do those things and he ONLY thinks about those things. He gets so over stimulated that he doesn’t sleep well, he’s more aggressive and his negative behaviors increase. So, he’s not learning, he’s frustrated, and he is losing the skills the intervention was trying to teach him because they didn’t stay with it long enough for him to master what he needed.

Which means I am not sleeping and I am caring for him (being his therapist which I have never wanted to be) and battling with what to do. I always have in my mind that Nicky’s window of opportunity for learning will slow as he ages, so time is not our friend. When we hit these lows I go to the place where I am trying to get control so my kiddo doesn’t suffer, I begin searching for other solutions. AHHHH this makes me angry and crazy!

For the past 7 years I have been working with the schools, doctors, state programs and therapy groups to get the best or most appropriate program for Nicky based upon his needs. I struggle and collaborate with experts and gate keepers on a plan, and eventually we agree on a plan and then I feel excited “Now it’s going to be better” – “Good job mom you did it, you can relax now”. Then the program begins and for one reason or another it slowly falls apart, like it just did not the umpteenth time.

Therapy for autism is the equivalent to a prescription for illness or radiation for a cancer patient, not a guarantee but the best hope modern medicine has to offer. Therapy is the only intervention PROVEN to help kids with autism improve and lead more independent lives (Speech, Social Skills training, OT, Floor time, PT, and Behavior Intervention – ABA, DTT) The intervention/therapy/support plans that make up Nicky’s program are his prescription to get him as healthy as possible. For years we have had the prescription, but we have not been able to fill it!

Nicky’s “prescription” includes 25 hours of ABA therapy (Applied Behavioral Analysis) This means the therapist comes to our house and uses an ABA program help him with comprehension, social skills, self help skills and aggressive behavior. The agency has a wonderful supervisor who knows what she is doing but I have learned over and over that she just doesn’t have enough staff to do the job. I’ve tried to work with her, because the problem is everywhere – so switching agencies (which I have done 2 times) doesn’t guarantee things will get better. Agencies promise they will be able to provide staff consistently and in my case none of them have. Since September 6^th we have lost 2 therapists and last week Nicky received only 4 hours of his prescribed 25 hour program. We have been with this agency for almost 2 years and we have never received Nicky’s 25 hours. After many battles we have for short periods of time gotten close, but it never lasts more than a few weeks or a month.

I know that Nicky is a kid who learns, I have kept records and I can see his progress. I know that Nicky has had some benefit from this intervention; I also know that he would be doing better if we were doing the program as prescribed. Which we have not. I don’t know exactly how much we have lost, but I am very confident saying that the program has been at best ½ has effective as it could have been, had it been actually implemented as prescribed. I also know that the older he gets the slower he is able to learn, and I don’t have any way to measure what we have lost in time. If we were treated like this at a hospital we would have an open and shut case of mal practice.

When Nicky was first suspected of having autism the one message I got over and over was “Get help now”, early intervention is the key. When I asked “where?” nobody had answers, so I began reading and becoming an expert in autism so I could understand what was happening. Then I went to get help and found few that could help and those who could had long waiting lists and most did not accept insurance. Today, even though we know more about autism, nothing has really changed, but the problem has moved. The biggest problem before was getting a diagnosis, we have made progress there. Now the BIGGEST PROBLEM IS GETTING HELP AND KEEPIN IT. The help is not available, and if it is available the waiting lists are long and at a rate of $90 to $125 an hour for therapy, which is not covered by insurance, we are forced to depend on the systems that have promised to help – but can’t deliver how they need to.

I have learned that getting qualified intervention is not a Nicky problem, it’s not me or us, it is a systemic problem, because: there are not enough trained therapist available to help all the kids that need help and the pay for being a therapist is so poor that nobody stays. Therapists take these jobs on the way to the next job that will pay better. It’s more like a paid internship than a job, so people come in and go out – so there are never enough trained folks in the system at one time to do the job. So we start the program and when we begin to get up and running, they leave, this cycle repeats over and over. Two steps forward, one step back, one step forward two steps back…over and over again. From agency to agency the same problem. Oh, and since all the agencies have waiting lists from 3 months to 1 year – there are not many options available - there is no simple solution like change agencies.

I have learned that for all of the in home intervention, if our therapist cannot work with me and Nicky in the community he will always be an invalid and never achieve any sustainable level of independence. So now I am searching for a team that can be in my home and go with us – all the regular places kids and families go – so we can teach Nicky about danger, communication and self regulation and I am looking for more programs in the community where Nicky can be with other children. Keeping him in the house and school is not enough – he doesn’t learn how to not unbuckle his seat belt and pull my hair when we pass his favorite places – when he is home. Our kids have to be out in the community and we have to get the help to teach them how to survive or none of us will have a life.

If I knew this 7 years ago (which I didn’t and nobody else did) I would have put my focus on finding ways to extend his school day with the support of a therapist where he could work on play and homework EVERYDAY. I would look to find programs in my community where he would be supported by a team and even though there was turn over it wouldn't be all at once, so there would always be the consistency of the place and some of the people - he would never drop to zero. Then, I would then have worked to find a person who could be with us every weekend – a therapist who could take Nicky everywhere with out without me and my daughter; to the park to play with kids, to the roller rink to skate, to the zoo, all the things that all families do – while teaching every moment. This would have made more time for me and my daughter and it would have been a consistent plan I could rely on. Then I would had added all other therapies and programs that were available to me. All the time knowing that the constants would be school and my weekend support.

I know that despite the best intentions of many, few will be able to deliver consistently on all counts as needed. If you are getting 80% consistently you are doing good and stay there. I have found that with all of it’s problems – if you can get a good team – the support from your local school will be the most consistent program we can get during school age years. So focus on getting a great school program. This is where it can really pay to build relationships with your home school and find out exactly what your child needs and ask the school for it. That will mean getting outside opinions of what your child needs, get reports, get recommendations, hire experts, and be sure to understand "best practices in autism". This is not the time to be afraid of asking for what you need and going all the way to due process if necessary. I have yet to see a parent go through the due process with a plan that was legitimate and supported by experts not get most if not all of what they needed that the school district has the ability to provide. But I have seen families be denied because they did not prepare and fight the battle. So, this is the battle that can pay off for you and your entire family.

Notes to myself and others...

• As of today: Therapy is the only intervention PROVEN to help kids with autism improve and lead more independent lives (Speech, Social Skills training, OT, Floor time, PT, and Behavior Intervention – ABA, DTT)

• Our kids have to be out in the community and we have to get the help to teach them how to survive or none of us will have a life. Check with local schools, parks and recreations and mental health groups to find community events/activities that welcome children with disabiliteis. I learned that ASO has a soccer team just for special needs kids.

• No matter how great our program appears we have to monitor it and think about what it is doing for our child. Based on many many conversations and experiences everythree months is good for major review of goals and outcomes.
  

In Search of Balance!

As a single mom there is little time for me and I am learning that there has to be time for me. I have to find this time without feeling guilty so I keep telling myself "If you don't take care of you, no one will be here to take care of them". There has to be time for my daughter and Nicky cannot always be the one getting all the attention. Right now he get's all the attention because I am always worried about him. I tell my daughter that I'm sorry Nicky needs so much, but this is the hand we were dealt and she knows we can't leave him alone. That's just how it is.

At the same time I don't want her to grow up thinking that she is not important, that men are to be taken care of. I can't teach her this unless I live it...ohhhhhh. This is easier said than done, but I know I have to do it.

Time is teaching me that I cannot trade one life for two (mine and my daughters). I have to find balance and the best route to that for me is consistency.

Note to myself and others....

• We can all find time somewhere. I started with a bath every night ( a major event). Then I began making it a priority to walk or run 5 mornings a week.

• I am not helping my children when I don't take care of myself!
  

• I've have to give up ALL of my martyr tendencies...or die of exhaustion and frustraton
  

• I'm in for this for life so I can't burn myself out with stress now
  

The Lookie Lou's

I was just thinking about how it is to be out in public with my guy. People look when he makes noises instead of saying words - or starting jumping up and down for no apparent reason. They look at me like I'm the most stupid incompetent parent even placed on the earth when he breaks down and tantrums - throws things or hits me in pubic. The looks, I have them memorized.

People really do look at me like "lady can't you control you kid". I thought about this because we were at the zoo today and things went find, it was Halloween and people were in the best of spirits. No so, a few years ago when I went on a regular day and Nicky decided he did not want to leave the animal nursery. So, in true Nicky fashion he threw himself to the ground and refused to get up for more than 30 minutes. When I would approach him or try to talk to him or pull him up, he screamed louder, pinched and hit me, tried to hit his head on the cement and kicked his feet. People walked by and just stared at me. They gave me the "Wow what a bad mom you are" look. Some just kept walking while others actually stopped and stared. I remember one lady who actually said "if I would spank my kids I wouldn't have this problem" - I remember saying "Thank you", just trying to be polite because I didn't know what else to do.

At one time I carried cards the size of business cards in my wallet that described the disability and what was happening. The idea was that you could just hand these to folks who stopped and stared - instead of enduring the looks and comments. I never handed any out I was always too busy trying to calm my kid, but I like the idea.

I have also had good experiences. Once I went into my bank - Nicky was frustrated and not able to stay calm - Nicky had a water bottle. As we stepped in the door he threw the bottle and then threw himself to the ground while yelling and screaming. I could tell that some of the people thought he had hurt himself, while others did not have a clue. I had thrown my purse and my papers to the floor and was just holding tightly trying to get him to calm down. After about 4 minutes he was calmer and a lady approached me. I thought to myself "Donna be calm, you can take it, what's one more slice of judgment pie". But I was so wrong she looked at me with this amazed look and said "You are fantastic" I know what he has, my son has it and you handled that perfectly I am so impressed, it gives me hope". It took me a few seconds to take in that I had gotten a compliment...and when I got it I looked up and tears came out of my eyes. I thanked her and told her she was the first person to ever say that.

Since then I have been blessed with many many more people who have known what was going on, knew what autism looked like, approaching me to acknowledge how I work with my son and it has made it so much easier to brush off the Lookie Lou's.

It's easy to forgive, because in my case I know I was a judgmental lookie lou too before Nicky.

Halloween

It's that time again. Nicky is going to be Scooby Doo. He looks adorable, absolutely perfect. I know I enjoy this holiday more than he does, because he's not really sure why he's dressed up like a big dog and why I don't want him to peal the outfit off in public!

We are going to start our day off by trick or treating at the zoo, then we will go to speech therapy and then we will decide what's next. I really enjoy this holiday because I make sure to get him a fabulous costume and everyone gives him happy greetings - and when he does not respond to "HEY SCOOBY" - unlike when he doesn't respond to "Hey Nicky" I can play it off like he's been talking all day and he's just "over it".

PS - seems to me people are one their best behavior on holidays - which makes them far less judgmental and kinder than the rest of the year. I think I enjoy that too.

Dangers and The Single Mom

My next door neighbor was followed into her house by a man armed with a knife who planned to rob them. The good news is that my neighbor surprised him because she had a friend in the house, who surprised him back and he ran. Turns out this man is part of a crew of thieves who where hitting our area. I am freaked out, not just because the thought of such an incident is horrifying, but I am a single mom with a daughter and a son who has no idea what a robber is.

I worry that someone would come in the house and not understand a boy running and jumping and Nicky would not understand if I yelled "stop" and he would scare a thief and get himself shot.

I never really thought about that kind of safety, I've focused on cars, pools, crossing streets and him not leaving home and going to the neighbors naked. Those are scary but the thought of him in a violent situation, is really scary because he would not understand.

I don't have any solutions to this one...I know I'm not the gal to own a gun because I would be nervous every day that Nicky might get it.  My solution right now lays in the lap of our big dog and her instinct to protect us. She looks like a killer and I'm counting on her and a good alarm system to keep the bad guys out.

The System Doesn't Have A Brain

 For years I have struggled with agencies who provide Nickys behavior intervention. It has been hard for me to get them to provide the hours in the "Gold Standard" way they need to be provided to get the results ABA/DTT programs are capable of. Seven years into Nicky's diagnosis I am still fighting as hard now if not harder to get his hours and therapist to work on his case. THIS WEEK I'M LOSING THE BATTLE. Nicky's 25 hours per week have dropped officially to 8 and he has gotten 4. Doesn't take a brain surgeon to know that you can't do in 4 hours what you can do in 24. Nicky is a beautiful, smart, funny, and kind kiddo who likes to work. Nicky issues include; severe language processing deficits, limited motivation, poor social skills, lack of danger awareness, aggressive behavior and sensory integration problems galore.

Nicky is this great kid, who has great capacity for learning who can't keep a program that will help him be the best he can be. I keep fighting but it seems I am fighting with myself. Our state has an epidemic of children who have been diagnosed with Autism and there simply are not enough people to fill the work market. The pay is not so good, so the only folks (for the most part) who want the job are young adults who are going to school to get BA's/ or MA in psych or a related field. They see their positions as temporary, because the pay is poor, so they work for a while and move on. So, the work force problem is massive. Which means no people to provide the therapy.

Which means time passes and my son doesn't get the help he needs to be the person he can be. I'm trying to find someone on my own, but I can't afford it (because an independent would cost me $50 plus an hour) and If I had it I would not be able to properly monitor the program and it's progress.

I know "something" is better than nothing. I know my son has more support than lot's of other children, I know people are doing their best. But none of that seems to matter when it comes right down to it, because all I want is for them to take care of my son, and provide him with the consistency he needs to have a successful program. He doesn't have forever - behavior programs are not meant to be long term and as children age the pace of learning slows. So my darling boy loses valuable time, and there is little or nothing I can do.

Right now he is in the other room working with the therapist and he is happy, happy to be in his routine, happy to be learning, happy to be asked the questions and get the praise. It's a big contrast from 2 hours ago when I could not get him to sit down, relax, read or listen. All he wanted to do was scream, swing, tantrum.

I am looking for a new agency to provide this service, but they all have 6 month to 1 year waiting lists and I can't afford to have nothing. Not your win/win.

Notes to myself and others:

1. Rely on what I can do to offer consistency...and not others
2. Accept the systems flaws, without becoming resigned to them
3. Ask the agencys how they manage their waiting list and what kind of turn over they have before signing off with them.
4. Talk to other families to learn their experiences
5. Try to remain calm and know that this too shall pass.

Why is Nicky always moving? Self what? Perseverative???

Today was fabulously uneventful! Nicky was able to keep it together and we just enjoyed each other.

This day is so appreciated because it followed a weekend of "overstimulated" Nicky time filled with self stimulatory and uncontrollable perseverative behaviors. When Nicky is badly "overstimulated" he can't do anything without a melt down. It's incredible stressful. To give you a little context, for me it's like having to sit in a room and listen to nails on a chalk board - while I'm at Chuckie Cheese on a Saturday, while waiting to hear if I am going to have a job on Monday. These things have actually never happened all at once, but if they did they would feel much like last weekend. For those of you who don't know what "self stimulatory" and "perseverative behaviors" are let me try and explain (at least in Nicky terms).

Self Stimulatory behaviors....hum, where to start. First, our kids often have some over and under sensitivities to their senses and many Self Stimulatory behaviors come out of this deficit in body regulation. If you imagine these senses like a volume knob, they could be adjusted from silent to loud, or a pain meter, no feeling to excruciating. Sight, sound, smell, vision and touch can range off the normal setting for our kids. Now, imagine that your nervous system didn't send the right messages to the brain that let you know, when your body is sitting - you can be still - your bottom in on something - your are sitting and you should be still. Another example is you are standing, which means your feet are on the ground, you know where your body is and what it is doing, so you stand still in the knowledge that you can. Nicky and many kids with ASD often do now know where there bodies are in space and time so they seek out different movements that are self stimulation- which keeps them tuned in.

These movements range from spinning, swinging, running, jumping, watching things spin, rewinding video's, doing puzzles, staring at their moving hands just 2 inches from their eyes, deep pressure and the classic head banging. So when their system is not clear on what the body is doing and what it should be doing they seek out these "self stimulatory" behaviors, which gives them input. The input can range from Auditory (rewinding a story or song in the tape recorder over and over) For example when Nicky jumps he knows where is body is because of all the deep pressure he is getting up through his feet into his ankles, into his hips and he's connected - again this is how he gets tuned in to his normal setting.


So, kids like Nicky seek pressure for organization. Nicky has a range of "self stimulatory" behaviors and it seems to me that when he grows out of one, he replaces it with another. Right now some of the things he does to keep him connected or stimulated are spinning, swinging, jumping, making verbal noises, staring at his hands, watching video's, sometimes it is doing puzzles over and over again. All strategies to keep him connected somewhere. He has learned to create strategies that work for him, for example he loves to watch video's, and he loves to rewind videos and when he does this his nervous system gets so overstimulated that he has a total system overload resulting in a meltdown. So when he watches video's he often takes puzzles because he uses doing the puzzle to distract him just enough from the video to keep his body calm to reduce the likelihood of becoming so overstimulated that he has a meltdown. So he sits and franticly does puzzles while watching a video to keep him from bursting so he can continue to watch without a meltdown. What's a meltdown? For Nicky he might begin to scream or cry, throw something, run from one to to another to find someone to hit or pinch, kick, bit and be for the most part inconsolable - this can last for up to 3 minutes to 20 minutes - and not capable to calming himself. These episodes usually end with a tearful child saying "What Happened". When he is in an extended state of "over stimulation" just asking him to come and get a drink can set off a meltdown.

The best description I have hear about our kids and the messages in their bodies was this "Imagine you are at a lecture/Concert/Movie any place where you need to pay attention to what's happening. Now imagine that you desperately have to go to to the bathroom, I mean you really really have to go. Now ask yourself, how well could you pay attention to what's happening when your body is screaming GO TO THE BATHROOM...NOW. Well no matter how much you want to pay attention, your internal message continues to bring your attention back to the need at hand, your body. Well out kids are like that all the time!

Perseverative behaviors - this one is just like it sounds. It's something that our kids do over and over and over and over and over and they don't want to stop and they get so over stimulated that they become, you guessed it overstimulated.

Nicky used to perseverate on the Alphabet, now it's video's, books and the flamingos and swans at the zoo. When from the time he was 2 until he was 6 he would become so excited to see the alphabet up on the walls in the classroom he could think about nothing else. Then he began to say A is for Apple, A is for Adult and on and on through the entire alphabet. So we had to take the alphabet down in some of his classrooms so he could get some work done! Now he perseverants on videos and he has memorized hundreds of them and he wants to write lists of them, and he wants to search the internet for them. Another good word for perseverative could be obsession...Nicky becomes obsessed with things and he can't stop thinking about them. Here's a twist, the things that are "Self Stimulatory" which used in moderation can be good, because they can help him get organized, with him can at some point cross a line and turn into things he perseverates on...so you really have to watch the behaviors and keep track of when this shift is beginning to occur.

Oh, the computer is our best friend and our biggest enemy for these behaviors. The internet helped Nicky learn to type and spell because he was very motivated to type the names of what he loves (like Nick Jr.) into the Google Search and find everything he could about Elmo, Cookie Monster, Nick Jr. or Animal Soundtracks...whatever the love of the moment. All that is great, however he is obsessed about getting to the computers, and he seems to memorize everything he reads. Then you look at him and you can actually see that his is not paying attention to any of use in this life plain, rather he is inside himself happily playing back the memorized images and words like his own private movie.

More later.

Controlling Frustration (mine not Nicky's)

Today Nicky’s supervisor for his behavior team is coming over to “help” me. Right now I am so angry (which really means frustrated and tired and disappointed) that I know I won’t be able to hide it. She is going to walk in the door and there is going to be this unmistakable tension. I’ve promised myself not to punish her –even through I want to punish someone – and to try and be open, not on the brink of tears and to work toward having a conversation and letting her know that I don’t’ hate her. It’s hard when I’m in mother bear mode. I feel so afraid that he won’t get what he needs and this is really my only way of fighting back…I wish they understood that.

We went on our outing so the therapist could see the challenges I was having, that I need help with. It was amazing…he did not exhibit one negative behavior! He is like the squeek in your car, that goes away the minute you get to the mechanic.

Coping: Realities of Providing Care 24/7

Today is one of those days - sometimes I just get tired of fighting and I don't know where the energy will come from to do it again. 

In these moments I feel weary because I feel that this is not just today, but it’s been the past 7 years and it will be forever.

At the same time I know I will do what has to be done and I know it will all get worked out. I'll sit in a room with 5 other adults with agenda's... all over the place and somehow after all the battles they will do what they were supposed to do in the first place.

I’m just tired and I wish people didn’t make it so hard. I want someone to hold me and tell me “It’s gonna be Okay” or take the next battle for me or even tell me "I get it".  And I remember this...because I need hope.

“For I know the plans I have for you," declares the LORD,

 "plans to prosper you and not to harm you, plans to give

 you hope and a future….”  Jeremiah 29:11-12

Note to myself and others...
remember to breath, this too shall pass. Find a way to hug yourself, if there's no one else who can.

Somedays I feel like nobody cares - which isn't true

Really rough Nicky day - not his health – he is in the other room working now.  

Its me dealing with one of the agencies’s that support him and it seems we are always locking horns over something. Imagine dealing with your health insurance company everyday and they talk @$#@#@#@#@#*! and you try to understand their perspective and thier limitations and be reasonable - because you really have no choice - because your child needs them. 

But in the meantime...your child is not getting what is best for him and the clock is ticking. That window when his brain is most able to learn is closing. It seems that instead of looking at the issue - how to best help the child - rules, policies, and indifference keep creating road blocks. People freeze, find excuses, minimize the problem, blame me, Nicky, other systems, blah blah blah. 

Just because no one wants to be responsible, no one wants to be the one who dropped the ball, or maybe sometimes nobody can fix the problem. 

I get that...but WHY DOESN'T IT JUST DONG ON PEOPLE --- IF YOU TREAT MY SON LIKE YOU WOULD TREAT YOUR OWN CHILD, AND IF YOU TREAT ME LIKE YOU WOULD WANT TO BE TREATED, I MAY NOT BE HAPPY BUT I WILL CALM DOWN. I MAY CONTINUE TO HATE THE SITUATION BUT I WON'T HAVE THE ADDITIONAL PROBLEM OF FEELING LIKE I HAVE AN ENEMY.

A Day In The Life of a Single Mom, a Teenage Daughter, a Son With Autism and One Income

I had a friend tell me that I should really write about my life, my days. Not the ancient history of my mom and dad and growing up but about today. The crazy day to day events that would be hard for many to comprehend. Raising a son with a severe disability that we know little about, autism. Raising a daughter with a condition we all know much about "being a teenager". Lastly, raising them alone while running a business to support us, being a sister, a friend and maybe even one day, a wife again.

So often people say to me "I don't know how you do it" and I say "I don't know how I would'nt do it all". Humans can do amazing things and each of us gets that opportunity. Maybe this is mine. So, my hope is that my stories will help other's learn from my journey.

 In these pages I hope to share something useful to you, albeit about autism, teenage daughters, gratitude, survival, friendships, the education system, singlemomness or yourself. I also hope you will be reminded of what we can do if we find ourselves, faced with the opportunity and going it alone.

None of us signed up to be Self Cleaning Ovens, but we can do it.

Siezures and Society: People prefer brain surgery & cancer to autism.

Nicholas, like many kids with ASD has a seizure disorder. He takes meds and we keep it under control. We monitor his seizures on a regular basis, which means he gets hooked up to a portable monitor and we live with it for 24 hours. We go to a hospital or a sleep clinic and have (16-24) electrodes slowly glued to his head (yes, he hates it). But after many many sessions we have learned how to strap him to a "papoose" board and hold up a mimi DVD player with his favorites to keep him still and occupied while the equipment gets attached. Moving on, when they are finished connecting the wires they begin to wrap his head in gauze. It's heavy gauze and it's wrapped all around his head and under his chin...now instead of looking autistic he looks like he has had brain surgery or perhaps cancer.

Imagine this, when we come in the building and he being Nicky, cute kid, funny noises, funny movements with a mom who seems to be repeating herself and working hard to keep his hands of the elevator buttons. The looks range from indifference to uncomfortable to curious - but not sympathetic or compassionate. When we leave and his head is bandaged the looks shift to empathy and compassion and I can see they are thinking "poor kiddo I wonder what happened".

I've grown to love these days out. People try to help us, instead of get away. We don't get any of the negative energy that comes with ignorance and fear. It's always a good day for us. I told my daughter that we should wrap him up when ever we go on outings. Imagine how great it would be if we got that reception at Disneyland instead of - "hey lady can you shut him up, we have to stand in this line too".

Conclusion, people prefer brain surgery and cancer to autism. They can be compassionate about these illness' because they understand.

So ladies .... get your gauze, wrap your kid, relax and go enjoy your day!