Teenage Typical Sailings – What’s normal and what’s worst because of her brother?

Evyn (Nicky's older sister) is an old soul. She is smart, intuitive, and protective of me in ways that are all far beyond her years. This sometimes makes it hard to remember she is still just a kid, much less a kid who has had a quite a few rough years.

Evyn's world: Middle school is rough for most kids and she hated hers. She is in her first year of high school and likes it much better. Her dad was rarely available for her, and for as far back as she can remember he made choices that kept him away from us. For years he was there some of the time, but starting 3 years ago he was gone almost all the time. This was a major factor in my decision to file for divorce two years ago. He now lives in Thailand and communicates occasionally via E mail. She has not seen him since June 2006. She has only talked to him on the phone 2 times in just over 18 months. She feels inadequate and abandoned and the attention her brother gets just seems to make her loss’s seem bigger. She is frustrated and angry and her self confidence is low. She is furious with her dad and she is furious with her brother. Between the two of them she doesn’t have a good image of men and I worry about her. She takes her anger out a little on her brother - she can’t take any out on her dad because he’s not around - and she takes a lot out on me, because I am. Over and over I ask myself “What’s normal for a teenager and what’s worst because of her brother and her dad?”.

I talk to her and acknowledge how hard it must be to have a brother that always needs and gets attention. I know she understands that it’s not a choice it’s just one of the rotten realities of his disability. She understands he can’t be left alone, she knows he needs therapy, she knows he has problems sleeping because of his seizures and she knows it’s not his fault. She knows this is the hand we were dealt and we have to do out best to work together. With all that understanding, she is a kid and her the whole situation SCREAMS one big “NICKY IS FIRST” and she resents it. On a good note, she has begun to express her feelings and now says without any hesitation “I hate him” and “I don’t want to go anywhere he goes” and “I just don’t want anything to do with him”. I’m glad she’s not keeping it all inside. In many ways this seems like typical sibling stuff and I think it’s good.

She has always been a strong willed girl, an amazing brilliant strong willed individual. She has always had her own opinions and been very independent, which makes her a wonderful leader and not a follower. But now something new has been added to that will, and it seems to be a streak of stubbornness, that can only hurt her. She has come to a place where if things do not go precisely as she would like she shuts down. For example, on Friday when I picked her up from school, she handed me an invitation to a “Sweet Fifteen” party for one of her friends. The party was Saturday night, and she wanted to go and she wanted to go to the store and buy her friend a bird. I said, okay and we went to the bird store looked at birds, then I called two of Nicky’s therapist to see who might be able to watch Nicky at the last minute. Only one of the therapists were available and she could get to our house at 7:00. The dinner portion of the party started at 5 and the party reception began at 7. Evyn began to withdrawal and I knew she was disappointed. I recognized her frustration and shared with her that she had several options. I could get her there are 5 – so she could be there for the entire dinner – and it would be up to her if she wanted Nicky and I to come in. Remember she hates him and probably does not want her friends to see the creepy little brother. The therapist Chaundra, who Evyn really likes and is like a big sister to her could get there at 7. Then Nicky and I would go home or Chaundra could take Nicky home, her call. Me or Chaundra could hang out at the party. And a final option, she and I could just go out and see a movie or do whatever and Chaundra could baby sit Nicky. She hated them all and she refused to go anywhere. She went to her room. There was lot's of drama over me trying to get her to go, Chaundra talking to her, but no luck. This is a typical pattern in our house and I don’t really know what part is teen normal or what part is Evyn’s situation. I call it the zero flexibility factor...typical teen? Maybe.

For the past two years Evyn has been in therapy and I can’t tell you if it’s helping because Evyn really will not talk about her feelings in any depth. Most of her responses are either “Yes” or “No”. There's occasional tears when something is said that connects with her hurt. ...typical teen? Maybe. I sit in on most of the sessions and I feel fortunate that even if she does not know how to take advantage of the time to talk, she is listening and in time she will learn.

I have been sensitive to the realities of Evyn having a special needs brother for a long time. I try to keep balance, and I’m sad I can’t wave a magic wand and give her a typical brother with typical problems. I know Evyn has three major emotional challenges in her life right now, dad, brother and being a teenager. I don’t know what parts to attribute to what and when problems arise that’s frustrating for me. I do know that no matter what I do, she will, at least for now, feel like she is getting the short end of the stick. I really check myself to make sure that I'm not making it worse by letting my guilt for what's happened let her get away with things that will hurt her later. That's a rough one for me, because I truly feel bad for her sometimes, and I so want her to be happy. Typical Mom huh?

Lately, I have been talking more and more about how to get time for her and I without Nicky. We have talked about how we need to take advantage of opportunities to escape for a few hours, when they come up. We have talked about how even when we make a schedule things often don’t go as planned so we need to be creative and seize opportunities. She seemed to agree, but couldn’t put it into action.

So in response to my initial question “What’s normal and what’s worst because of her brother and dad?”. My answer is “who knows” and does it really matter. Most kids have some kind of challenges and all kids are different. The good and bad in life happens to all of us and all I can do is my best – whatever that means – to support my kids. I can embrace my circumstances and through action help them learn how to cope with whatever life dishes out.

If I can do that, Evyn will be fine. She will be strong and able to care for herself and if her special needs sibling was the vehicle that helped make her that way…so be it!

Notes to myself and others

• Remember how it looks for Evyn
• Remember to be loving and patient (when I feel helpless)
• Remember to be loving and patient even when she is behaving in ways that I don’t think help her – let her learn.
• Remember to notice the things that are going well (like her grades)
• Childhood depression is a real thing – keep my eyes open – it could happen
• Remember she is the kid and it’s up to me to guide her
• Remember no matter how smart she is she is still a kid
• Give her special attention whenever and however I can
• Don’t feel guilty, if I’m doing the best I can
• Know that she is doing the best she can
• Remember that this is not an easy time, so the responses are natural
• Try to not get frustrated, it doesn’t help
• She is a great kid and all the good is in there even when she doesn’t let it out
• She knows I love her – that’s why she feels safe enough to give me a hard time
• Watch her and give her options for caring for herself

Just the "Facts" Mam - The importance of records

Keep a record of everything! Before Nicky was 3 my records had already been used to get Nicky the proper medical care, diagnosis and successfully challenge the school district to obtain the best school placement for him.

Before I had any idea what was happening My notes gave me the ability to describe Nicky's medical history and development from birth to 2 (the details which would have escaped any parent over time, much less a sleep deprived mom). My notes were the tools I used to help him in ways I could have never imagined. My "mommy journal" exposed a history of his medical problems, dietary issues, allergies and quirky behaviors that helped the doctors as we journeyed toward diagnosis. I was confused, frustrated, scared and fatigued and didn't know what things were important and which were not. It was my notes painted a picture and understanding. They revealed almost all of Nicky's developmental and medical challenges that individually didn't mean much to me. But when put together for the doctors, they immediately saw patterns that lead to early diagnosis. We all know early diagnosis can lead to early intervention and early intervention is the key to helping all kids diagnosed with ASD. So we have my notes (and not my brain that was putty at the time) to thank for helping Nicky get an early diagnosis!

After diagnosis I continued to use my daily journal to keep track of most of what went on in his early intervention program from home services to his first school placement. Again, it was my records that came to the rescue and helped me to secure the educational placement that was best for Nicky, after he spent 9 months in a program where I saw him regressing.

Sadly, it was not my passion that he was being harmed or not growing to the best of his ability that made it possible for me to change my son’s placement or get him needed services. These feelings and opinions are important but they din't help the assistant principles, caseworkers, judges or mediators give us what Nicky needed. It was the facts - recorded and kept daily, which showed patterns - that gave us credibility and got our needs met.

As parents we are the only ones who can document what is happening with our children in the big picture. When Nicky began regressing in school educators and administrations took a position about what Nicky needed and it was different than my position. I know that others often believe they know what is best for our children, and sometimes they are right and sometimes they are wrong. It's up to us to fight the good fight for our kids. One of my fights began with a 9 hour IEP where I got physically ill battling back and forth over placement. In the end it was the school journal that I kept with his teacher that made the difference. It was the journal that showed a pattern of requests unmet and issues un addressed. It was the journal that took the conversation away from being my word vs someone else's word.

1. "The Parent vs the Expert" - when it came right down to it, because of my natural desire to protect my child, I am viewed as: emotional, attached and incapable of being objective (some truth to that). I am automatically placed in the “just another pushy mom" category. When professionals only see me in that light my words have no value. It’s up to me that change that. When I don’t, they remain the “experts” and I am a bug to squish because I am not considered credible.

3. "Parents are Experts" we are the best experts for our kids. We know our children better than anyone. That's the position we have to take and that's the role we have to prepare ourselves to play.

2. "Facts not Feelings" - no matter how right we might be, just saying so is not enough. Proof - not just our conviction - in the form of records of events, outside evaluations, logs of daily activities are our ammunition to fight for our kids. These are the tools of the expert parent.

So again, thanks for the lessons. Because of these experiences I still keep records and they have yet to fail us.

Note to myself and others:

• Notes, these are the things we can do. My ledgers gave me power in a world where I so often felt powerless. Keeping records is something I can do, it is something that does make a difference. It is so empowering.

• No worries: Don't worry if the notes do not seem important at the time just keep track of the days.
• Make it a habit: Keeping records is a good habit to get into because we need them not only for education and treatment, but to track allergies and drug interventions.
• Get Everyone Involved: I had Nicky's teachers or aids fill in his daily ledger for me too. They would tell me how his behavior, his aids and give me little details. All I had to do was to tell them "I really like to know about Nicky's days, and since I can't be here can you give me a little note every day". Most were happy to do it. When I had questions or I wanted them to know something about his care I would send them in writing in our little ledger. Before long I had a history, which was usually not needed for battles, that I could use to improve Nicky's care.
• Encouragement: I've gone back and read some of them and it was a great way to see how far he had come. Sometimes, because I see him everyday, I forget how much we have accomplished. Reading the ledgers reminds me how much I have to celebrate!
• Way too much: As Nicky has gotten older there have been many times when I just can’t remember things that I need to know to help with his current progress. I often can’t remember what was in a program, or when his language began to get more spontaneous, when we tried something and it didn’t work. Gosh, I can’t even remember all the things I have forgotten and then used my notes to go back and build a history, so we could work on his future. These notes seem to help forever.

Find Your Laugher Where You Can a/k/a Outings with Nicky

I remember when I was so scared, worried and embarrassed and everything was so serious I could not laugh. I'm glad it's better now. I know it's better because today I got a major laugh out of my trip with Nicky to the pharmacy. You already know I take Nicky everywhere, which includes boring errands.

Well thanks to his view of the world today’s errands were anything but boring. Our first trip was to the bank, where he did great. He sat quietly and watched the TV while I took care of our business. Then we were off to the pharmacy to get his prescriptions. It’s not uncommon that they don’t have his med’s in stock or that the line is long so waiting is a common event at the pharmacy. Nicky was restless so while I waited he occasionally jumped up and down and made noise to get himself regulated. People stare, but no problem, I am so used to it. It’s January and it’s cold outside – not freezing but not summer weather – so I am surprised to look up and see a tall lady in line wearing short shorts and a sheer mid drift top. I also notice that she had a band aid on her leg. Nicky is with me so my radar goes up.

Now for a little back story – 1. Nicky loves to touch tummies and bare skin on people. He likes to press his ear on people’s tummy’s arms and legs. We are all sensory tools for him to use for deep pressure and input. 2. Nicky does not like anything that has been added to a person from Band-Aids to nose rings, to hats to pacifiers. He spots them all. He has been known to take pacifiers from babies, stare at body piercings and pull band aids off of people. He wants things to be smooth. 3. He is fascinated by things that look different including: hairy legs, colored sunglasses and tattoos.

So I am always on the look out for these things which I know are Nicky magnets. I’m for the most part pretty good at cutting him off before he can get to a stranger and pull off their hat or push on their belly button. Oh, and I’m also pretty good at smoothing the reactions people get to having their personal boundaries invaded.

I know she looked like a sensory candy store for Nicky, so I go on the alert. My hands were full as I hear Nicky’s feet going in the direction of the lady in the shorts, exposed belly and hairy legs. I looked up to see her look of shock as Nicky ran his hand across her leg fascinated by her bare and hairy legs. YIKES….I calmly went over and said “Nicky you may not be warm enough for shorts but other people like them, sorry miss”. She gives me a sigh of relief and all is well.

I think to myself “I’m happy because I got there before he could pull off her band aid or push his ear on her tummy. Good save mom”. I return to the counter to finish paying for the medications. Next, I turn around to see a dwarf (who I personally know because we used to live in the same condo 5 years ago ) He is a great guy. Here’s the conversation.

Donna “Hi Danny”.

Danny “Hi” and he comments on how much Nicky had grown.

Nicky Looking at Danny “Short, grow”

Donna “How are you doing?”, “How is your wife?”

I try to body block Nicky a bit so I can continue the conversation. No luck.

Nicky Points and says “short, small, eat, grow”.

Donna “Danny it was great to see you. Happy New Year”.

I begin walking quickly with Nicky to the exit because although I’m not embarrassed I don’t want Nicky to yell anything out.

I woke up this morning and I just started laughing. I suddenly could see the entire series of events without the worry of "how people were feeling" and I just couldn’t stop laughing. Nicky with his “short, small, eat, grow” was one of the funniest things I have ever heard. His response was honest and perfectly reasonable from his perspective.

As for the lady in the shorts, heck there are risks to going out in winter is very little clothing!

Notes to myself and others:

• Out of the mouths of babes applies for our kids too

• Remember to say calm, it helps everyone. (imagine if I had been nervous how much it could have stressed the others)

• Our kids honesty can be fun and refreshing

• Take our joy where we can get it, it may not come in the expected places but it does come!

• If we forget to laugh we will go crazy…so laugh (even if you have to wait and do it alone)

Wrestle Mania - The Battle of the Medicines - It's going down!

Taking Medicine

Kid’s don’t like to take medicine and ASD kids often have to take a lot. Since we can't explain to most of our kids "why" it's important for them to take the medicine, they don't understand why it's so important, or that it will help them get better, which increases the resistance. Because our kids have different medical issues they can be on an array of med’s at one time. Nicky has severe allergies, seizure disorder and gastro internal problems. He takes meds for seizures, for sleeping, allergies, for brain function and supplements for everything else. If a child in on the DAN protocol or the GFCF (gluten/casein free diet) the number of supplements skyrockets! Since he was 2 Nicky has consistently been on no less than 4 supplements/prescriptions at any given time. The med’s typically come in three forms syrup, sprinkles, pills. Nicky cannot swallow a pill. He is very sensitive to textures so he spits out the sprinkles (which some kids like in apple sauce or ice cream). So my choices have been to find creative ways to work with pills and syrup.

Just knowing that we had to introduce a new medicine used to be an event for us. In the beginning I didn’t know what to do. Medicine time used to be like “Wrestle Mania” I’ll leave it to your imagination to decide the names of the wrestlers J. I remember saying to myself “He’s a little guy and I’m the mom so I’ll just hold him here, put it in his mouth and he will swallow it”. I could not have been more wrong! It seems impossible to me that I could not hold down those little arms and legs and quickly get him to swallow, but I couldn’t. I look back and laugh just thinking about how we must of looked as I would just try and force him to swallow the spoon full of syrup and we would struggle on the kitchen floor. We slid up and down the kitchen floor and in the end the medicine was not in Nicky, but all over me. I wish we had video’s of that, just so I could look back and see our progress and at the same time get a good laugh – not at Nicky but at me. It’s pretty funny to think that I was literally wrestling with my little guy over medicine.

We didn’t get there via one route, it took several. I cooked his favorite treats, including wheat free, gluten free chocolate cake and tried to hide the med’s that could be blended with food. Nicky could not tolerate dairy and he hated the texture of applesauce so I could not hide food there, however that works for lot’s of moms. Nicky only loves eating chicken and potatoes. These are not easy foods to hide medicine in (ever try spiking a French fry?) so I had to be creative and keep experimenting.

In the end a combination of crushed pills and a simple ABA strategy did the trick for us. You really do have to pick what is best from your child by finding a corner to build from. In my case I knew Nicky was not going to swallow a pill, I knew he loved apple juice – so the crushed pill in juice was a good plan for me and it still works. However you don’t always get that lucky. Some kids like apple sauce so med’s can be blended in the apple sauce, so kids like ice cream and you can blend there. Nicky has a very restricted diet so I didn’t have a lot of choices. This lead me to the ABA approach I call “First this and then that”.

Basically, there is always something Nicky wants at least three times a day (video, food, snack, juice whatever). It is the routine in our house - whenever I have had to give him medicine or food that he HATES - taking the medicine or new food is a prerequisite to getting whatever he may want. This did not happen overnight. I had to be patient and willing to wait him out, and it did work for us. It took time, however things are pretty smooth now. Nicky he has taken so much medicine that when he is presented with a new medicine, he looks at it, smells it, let’s out a very sad little cry of frustration and then soon agrees to swallow it. Which is followed by a direct statement of “Yuck” and followed by him looking at me with incredible expressive face which looks like he still had the most yucky thing in the world in his mouth. It’s all I can do to not break out in laugher it’s such a funny face. But I’m so proud of him I keep a straight face and praise him like he just won a gold medal at the Olympics!

Notes to myself and others –

• When adding meds/supplements to food or drinks does not work try to crush a pill, add it to a table spoon of juice, yogurt or ice cream (something Nicky likes)- and then suck it up into a medicine syringe. This keeps the amount small, it’s in a spill proof container and it can be given quickly. I tell him it's going to be quick and it's just medicine in ice cream and I help him hold his head back and I squeeze the medicine as far back in his mouth as I can (to insure swallowing).

• I have the desired item right in from of him (in our case it was a Barney Video) so I can reward him immediately. This has really worked for me and for the most part even when Nicky hates the medicine he will take it. Yes, it took some time and I had to be consistent with not letting him have what he wanted until after he took the medicine.

• I stick with the script and in a level even serious tone (not angry just matter of fact). I say “Nicky before you can have Barney you have to take your medicine. On the count of three we are going to take the medicine. One, Two, Three”. Then offer the spoon, juice, vegetable or whatever you have. Okay but we can’t have Barney until you take your medicine.

• It’s pretty much the same for blood tests and haircuts too.

• Remember to say calm, whenever I start to get frustrated he ramps right up behind me

• Be patient – I always knew Nicky watching and waiting me out, reading my every move, registering my every emotion. It’s a little like a chess game so I stayed patient and clam like it was no big deal, just want had to be done.

Can schools do that? What rights does my child have?

News Flash! Many of the school educators and administrations - who I assumed were qualified to make program decisions - who have said "NO" to services, or didn't offer program options were not being cruel, or difficult they just really didn't know what to offer and they didn't know the law. A large percentage of the school site staff - who work daily with our children - do not have all the information. As parents of children with ASD, we must be open to the notion; people just do not have enough information. So, once again it's  up to us to knowledgeable when it comes to what our kids require and are entitled to. That being the case learning our child's rights and some of the basic legal stuff is essential. 

Learning some basics has helped me to send the important message that "I've done my homework. I am prepared to sit at this table and make decisions with you, a/k/a Imean business". This has translated to getting most of my sons needs negotiated with his school site team and avoiding due process and mediation. This is a good thing because it means; there is no delay in getting my son's needs met, relationships with school personnel stay positive and I don't have to hire an attorney for mediation or due process. It has not always worked, and it's important to know that you can't get all issued resolved at the school level.  Important note: The school district will reimburse you for attorney's fees (100%) if you win your case. However, they do not reimburse for advocates. So talk to your lawyer or advocate to determine who you should hire based on what kind of dispute you have. Here are the legal tidbits that I use the most in the school setting:

1. An IEP only goes into effect once the parent/ guardian signs it
2. If I don't agree with his IEP - I don't have to sign it.
3. Any services he has in place (prior to the IEP in question) may or may not stay in place until an agreement is reached, ask.
4. I can proceed to "due process" or mediation to challenge any decision made on a school level.
5. If I have to hire an attorney to defend me, and I win the school district pays the legal fees.
6. I can call an IEP anytime I feel it is necessary, and I can call as many as I feel are necessary.
7. I can call an emergency IEP if necessary and the school must schedule within 30 days.
8. www.wrightslaw.com is a great website for advocacy and legal information

Note to self and others: read before every IEP!

Here is a section from the educational code that helps us understand what rights our children are entitled to.

Special Education Code 

56363.  (a) Designated instruction and services as specified in the individualized education program shall be available when the instruction and services are necessary for the pupil to benefit

educationally from his or her instructional program.  The instruction and services shall be provided by the regular class teacher, the special class teacher, or the resource specialist if the teacher or specialist is competent to provide the instruction and services and if the provision of the instruction and services by the teacher or specialist is feasible.  If not, the appropriate designated instruction and services specialist shall provide the instruction and

services.  Designated instruction and services shall meet standards adopted by the board. (b) These services may include, but are not limited to, the

following:

   (1) Language and speech development and remediation.  The language

and speech development and remediation services may be provided by a

speech-language pathology assistant as defined in subdivision (f) of

Section 2530.2 of the Business and Professions Code.

   (2) Audiological services.

   (3) Orientation and mobility instruction.

   (4) Instruction in the home or hospital.

   (5) Adapted physical education.

   (6) Physical and occupational therapy.

   (7) Vision services.

   (8) Specialized driver training instruction.

   (9) Counseling and guidance.

   (10) Psychological services other than assessment and development of the individualized education program.

   (11) Parent counseling and training.

   (12) Health and nursing services.

   (13) Social worker services.

   (14) Specially designed vocational education and career development.

   (15) Recreation services.

   (16) Specialized services for low-incidence disabilities, such as readers, transcribers, and vision and hearing services.

So here it is in black and white.

Planes, Trains and Automobiles.....The Travel Experience

Last week I took Nicky to see his neurologist, who is out of town in Sacramento CA, so we have to fly there. I know planes trains and automobiles can bring on all sorts of feelings in people from excitement to dread. Before Nicky I just had regular feelings about the getting on a plane. I felt some excitement when traveling for fun, exhaustion when traveling a lot for business, and fear when the air pockets were out of control. That was then…here's what airports mean for me now.

Change of routine, which means be prepared for the unexpected!!!
I take a deep breath and I thank God in advance that my child will have a good day and he won’t…

• Melt down and get tackled by a TSA agent
• Set off any alarms that get us both arrested
• Hit the person sitting on the airplane next to us
• Sit down and have a tantrum in the metal detector
• Reach for the gun on a guard
• Freak out if the metal detector “Beeps”
• Start screaming on the plane and we get kicked off
• Miss out on a window seat
• Have too many people stare
• Won’t be so unhappy and anxious that he can’t sit on the plane
• Run away while I have to put my shoes back on
• Be exposed to an emergency situation where someone yells an direction and he
• doesn’t Understand, so the TSA jump us.
• Scream on the airplane (a lot a little is okay)
• Try to use the person in the seat next to us as a sensory tool

I pray that the TSA agents have some knowledge of disabled kids, so they can be compassionate and patient if we need them to (it’s the trigger happy thing that freaks me out). Finally I give thanks I won't beep when going through the metal detector, which means I have to be strip searched - while I try and keep Nicky near me.

The good news is that I keep taking Nicky out and facing these challenges and it’s getting easier. The challenges change and it’s up to me to continue to push not only Nicky to do more but for me to learn that he can do more. I want him to be as independent as possible and doing things that require much from both of us, really is helping us get there. So up, up and away!!!!!

Note to myself and others:

• Remember, all the bad things I imagine never really happen
• If I talk to him about the trip for a few days before he always does better
• Take melatonin, treats, books and things he likes…and be prepared to give them to him (on a reward type basis, for doing so well) slowly over the course of the trip.
• Tell him as many details as possible to avoid his anxiety
• If it’s a new airport, go there first and walk him around, that helps prepare him
• Tell the reservation clerk that I am traveling with a disabled child – so I can board first and maybe get a seat not next to anybody.
• Remember that there is a short security line for people with disabilities…use it when the lines are long

See you in the skys!

Sibilings....do they really know?

Months after Nicholas was diagnosed I was warned that I needed to be sure to remember the impact on Nicky's sister. I was told over and over, it's not just mom, dad and the child who are changed forever, this is a major life event for siblings too. I was told to keep an eye on his sister. Make sure you don't forget to make special time with her, talk to her, get her in sibling work shops and most of all remember she is going to be affected.

I tried to keep special time with her as part of our routine. I made sure I did not ask her to help too much with her brother (I was so concerned that she would feel responsible for him). In hindsite I'm sure I asked her to help less with him than I would have if he were typical. I really went out of my way to not have Nicky become a burden to her, at least in the ways that I could see. I knew that having him in the house and his constant needs was burden enough, she should not have to help take care of him too.

The embrace the typical part of their relationship, the wonderful sibling remarks from his sister. "Yuck", "I can't stand my brother". "Keep him away from me" and the ever popular "I wish he was never born" can be heard on a routine basis.

Because I worked so hard to not have her take responsibility for him, I really did not know if she felt nervous about his care or fully understood the nature of long term care Nicky may need. However one afternoon when Evyn was 12, we were driving onto a freeway offramp, when I looked up and saw a man comming down the embankment. When I looked in his face, I knew he was autistic. I knew he was homeless and I knew he was alone. I suddenly broke out into uncontrollable tears. When Evyn asked what was wrong. I said "I'm so sorry honey, when I looked at that man, I knew he had autism and I suddenly saw your brother in 20 years.

She turned to me and with a maturity and understanding far beyond her years she said "Don't worry mom, I will never let that happen to Nicky".

It was in that minute that I knew for sure that Evyn understood the magnitude of her brothers illness and the reality that he would need life long care. It was also the moment that I learned that on some level, no matter what I had done to limit her burden, she knew she would be responsible for caring for him, when I can't.

Notes to myself and others
The siblings are impacted no matter what we do
The siblings often build wonderful careers as a result of having a special needs sibiling
Siblings are very special too

Playdates....now that's scarey!

Play dates for most parents conjure up adorable images of their children playing in the sand, chasing one other, laughing, talking and enjoying everyday childhood activities. For most parents play dates are so basic we can’t help but take them for granted. From parallel play to pretend games to slides, hide and seek, bike rides, hot wheels to dolls it’s just what happens in childhood. Not for my family! Nicky is 9 and I am still afraid of play dates. They are not been fun, they have not been relaxing, and they have not been the breeding ground of hallmark images, at least not in the traditional since.

Play dates, birthday parties, sports and days in the park are supercharged with emotion for me. Emotions like; fear, embarrassment, frustration, loss and sadness, because these are the places where I can’t hide from autism and we are among strangers. These are the places where, as he stands next to other children, it is so apparent that he is not the same. These are the places where I feel like a GIANT MAGNIFYING GLASS is hovering over his head, following him and making his challenges stand out larger than life. These are the places where his differences and not his wonders seem to stand out so much. These are the places where I can’t hide from what he is not, and these are the places where I most feel his loss. These are the places where I know he doesn’t really have any friends and I am reminded that he will probably never marry or enjoy intimate relationships with people. This is where I most feel the loss of a so called “Normal” life.

I know it’s hard to understand why a play date is so scary. To understand you have to look at the whole picture, both the parents and the children involved.

Parents want to protect their kids and my son doesn't seem safe. Parents are typically furiously protective of their children, especially their little children. I know I am. We all want our children to have friends who are well mannered and play well. We want to see our children in happy situations having fun with a peer they connect with. Well that’s not what was happening with Nicky. When he plays it’s not typical, he has great difficulty interacting, he often doesn't show interest in playing the age appropriate games other kids are playing, his speech is limited and he has behaviors that look strange to other kids. He makes noises and may not talk, he can’t carry on a interactive conversation, he stops to jump up and down, flap his hands or recite the names of videos over and over. He can also be aggressive, which scares the kids and parents.

The kids are not sure what to do, and the parents, even the ones who are trying really hard to be nice, are afraid. Some kids try to play with Nicky, some just stare and others even ask me what is wrong or why he does what he does. For the most part the kids are curious and cautious. So often I find that if I talk to the children and explain "Nicky" they say "Okay" and they try and play with him. Occasionally there are kids who don't want to play and they also don't want their friends to play, but I usually take the approach that those kids simply did not want to play with Nicky and that had little to do with autism.

We get all kinds of responses from parents. I’ve encountered parents that had no idea what is wrong with Nicky so they would just slowly steer their child away. Some are very judgmental and it’s clear they are thinking “can’t you control your child”. On occasion these parents have been known to give me advice on parenting. I’ll never forget the mom who said “Nothing a good spanking couldn’t fix”. 

More common are the parents who just want to keep their child safe - and feel that being around Nicky somehow would not be safe - they find creative ways to separate from him. They encourage their child to play else where anywhere just away from us. They encourage their children to not stare, as they stare themselves. I’ve received so many uncomfortable forced smiles that seem to yell “I’m so sorry but your son makes me really uncomfortable and I don’t know what to do, so I’m taking my child away ”. There is the occasional parent who is familiar with children with ASD who strikes up a conversation, acknowledging the situation and seeking to somehow connect with me. However, even this parents leaves without asking if we can have a play date.

At one point it was failed play dates that could have driven me into isolation with Nicky. I was so tired of feeling other peoples fear, frustration and my embarrassment that I just wanted to be around people who understood. It felt so good to be around people who were non judgmental and forgiving – but deep inside I knew that was not what was best for Nicky.

Playdates in the clinic – Oh how I longed for the safety of a therapy room. The security of only having my child play with other developmentally disabled children, because the parents were more forgiving…because we all had more to forgive. In this safe environment, all the moms and dad’s smile and say it’s okay when they hear that your child did “whatever” that injected havoc in the group. We all smile and console one anther because every parent knows that any day it could be their child that created “the issue”. We are very gracious to one another on the days that it’s someone else’s child who is at the center of the day’s challenges. For me, I am just so relieved and happy not to be the parent getting the update on how my child hit, kicked, bit, pinched, or freaked out, it’s easy to take the high ground. So, in this safe haven, it’s true that our children are still in a clinical environment, they don’t have much in the way of typical peers to model, but they are safe and it was a trade I was willing to make – for both of us – for a long time.

Play dates from school – Very rare, actually never until last year. There are several reasons for this. First, until recently (he’s 9 now) Nicky would never ask to have any over, because he wasn’t interested in play dates. He wasn’t really interested in any of the children. Although the children liked Nicky and were kind to him, they did not exchange phone numbers or develop typical social interactions. So, I never called parents from school and they never called us. Second, Nicky did not attend his home school, his school mates were not our neighbors, so developing relationships with school kids was almost impossible for us.

After 4 years at his school he has developed a friendship with a wonderful little guy named Aaron who just loves him and wants to play with him. We have play dates, we go on outing and Aaron is a wonderful child who loves Nicky and just wants to spend time with him. So there is hope!

Notes to myself and others

Don’t let people’s ignorance keep us isolated

Watch Autism Everyday when I feel alone and need encouragement to keep going

Remind myself

· I am not a bad mom if I get embarrassed

· If people knew better they would do better

· Be forgiving, remember how I was before I knew about autism.

· I have the right to go anywhere with my son

· Nicky is a great kid and he deserves to go anywhere and see everything

· Nicky benefits from being in the world

· That he is a child first, and he has autism second

· It takes practice for anyone to do anything better…

Socializing is no exception

· Pay attention to all of his progress – especially the little things

• Learn how to manage my own frustration around Nicky’s behavior

• Get help with outings from local agencies if necessary

• Take family members along for moral support when needed