Dear Waitress Who Growled At My Special Needs Son

Yesterday we had an unfortunate situation at a local restaurant that left us extremely upset. Here is my response to the rude behavior we witnessed. I did leave out the name of the person. ETA- I am going to name the restaurant as I would hate for someone to think it was a different place. Fortune Asian is the name of the restaurant this happened at. 

Dear Waitress Who Growled At My Son,

As you know we have been in the restaurant where you work many times over the last year or more. We enjoy the food and it is near our home, but with each time we have gone you have made it more obvious how much you do not like for us to choose your restaurant to dine in.

At first I thought you were having a bad day, very quiet, or maybe just had a lot going on in your life that would make you look with dread each time you seated us at a table. Yes, I did notice the eyerolls you would give us when we ordered too. Looking back I wonder what kept us going back except that the food was very consistently good and reasonably priced. I was a waitress years ago and I wanted to give you the benefit of the doubt which is why we kept returning. Yet, I still always hoped that someone else would wait on our table and every once in awhile someone else would. They were always courteous, polite, and made us feel welcome.

It has been over a month since we have dined there and we decided to return because our son wanted to go there. The look on your face when you saw us come in the door should have been enough. Yes, I noticed. My husband went to the restroom and my son tried to strike up a conversation with you. I heard it. You growled at him, gave him and I the stink eye and walked off. Initially I thought I was hearing things as why would an adult “growl”. I asked my daughter and she said that yes, you growled at her brother.

Once my husband returned to the table and I briefly explained your rudeness he agreed we should leave. On the way out the door I told you, “We will never come back here.” Your response? You smiled, shook your head and said, “okay”.

After talking with a couple of friends I still want to give you the benefit of the doubt as maybe you did not realize my son has special needs. Despite the fact that my son has always been polite and well behaved in your restaurant he does talk a lot. A LOT. He also asks a lot of questions and at times they are pretty off the wall. The question he asked you was not offensive and it wasn’t even really rude...it was just off the wall. He asked you if the other man working there was your son.

I know for a fact from other times dining there that your children often work there with you. He was not trying to be rude he was trying to strike up a conversation and he knew the one time he asked if the two children that were there were yours...you actually spoke to him.

I will be the first to say that my son can be challenging to be around. Maybe you should know though that he has autism and that he also has a disability called Prader-Willi Syndrome. Without going into too many unnecessary details a few of the ways these two challenges affect my son is with excessive talking, being socially appropriate, Obsessive Compulsive Disorder, and impulse control. (those are just a few of the many challenges he has to deal with daily, just a drop in the bucket) He tries so hard...and he has come a long way in his 14+ years.

One way that we try and teach our son is by bringing him out in the community and helping him learn how to act appropriately, and what is socially acceptable around people. With all honesty I can say he has never been a bother at the restaurant you work at except with sometimes being a little too loud and obviously by annoying you somehow.

I’ve explained my son’s challenges with his sometimes out of the ordinary behavior so you know why he is the way he is. I should also say that in any other restaurant we have been to in Hendersonville (and we have many favorites) he and our family have been treated with nothing but respect. In fact, he becomes a favorite of waitresses and customers, despite his many challenges he is the most charming person you will ever meet. Unfortunately, due to your rudeness (I would love to hear the excuse you have for your rudeness by the way) you will never get to know this. You are truly the one missing out on his pure and sweet awesomeness.

Did my son notice your rudeness? No. He did notice how upset his mama was after leaving your restaurant while I explained to my husband how you behaved. We were not mad at him for what he said but after he overheard what we were talking about the experience and kept saying, “I’m sorry!, I’m sorry!” He had nothing to be sorry for yet he stated to us “sometimes I feel stupid”. This is not something I have heard him say but a couple of times.

I came home and looked at your website to see who the managers or owners of the restaurant you worked at were as I wanted to contact them. What I discovered was that YOU are the owner. Shame on you! Good food does not make a restaurant...it needs equal amounts of kindness and being hospitable and you are sorely missing both of those traits.

I will be reviewing your restaurant at many different places including our blogs and Facebook. My husband and I will be passing this information along to many friends and families with special needs children. To growl at any child in your restaurant much less a child with special needs is pitiful. Fortunately there are many other restaurants in town that welcome our business and welcome our son.

~J~

Pity Party for One

It's my party and I can cry if I want to. Why? It's not something new that I have realized, but even after you have thought that you have come to peace with something...the scab is torn off so to speak and quite frankly it hurts! A~man has come so far in his 14 years, much farther than we could have ever imagined. But sometimes I get reminded that things are not "normal". (what is normal anyway?) What am I babbling about?

Sometimes it is hard to hear of teen social events and realize that this is not something A~man would be welcomed to...by other peers. (and maybe not even their parents) Does he notice that he has never been invited to a birthday party of a peer since he was a toddler? (well...unless it was a party that Z~girl was invited to) No, he has not. In fact he has never been invited to play unless it was initially an invitation for his sister and he was included in the invite.(which I have to say was kind to do...not belittling it!) Oops, with the exception of going to the movies with his friend that is a girl last summer!! Do I notice when teen events are happening and he would not be on someone's mind to invite? YES, and it hurts a mamas heart enough for him and I. This isn't really homeschool related as I'm guessing the same would be true if he was in regular school learning math and the properties of matter, rather than at home learning.

This summer Z~girl will be a teen. (Lord help me, seriously!!! not about boys but the rollercoaster of moods is already taking its toll on me) I have no doubt she will not have a problem getting invites and finding opportunities to "socialize". The ironic thing being A~man is the one who craves being around other people and Z~girl is like her mama and values her solitary time even more so than being with friends. Don't get me wrong, both of us like hanging out with friends, but A~man craves being around people he can talk to. (he needs to work on the listening part of having friends)

I will say the peers we are around are for the most part typically  polite, patient, and kind to him (I suspect they have noticed my mama bear claws??) ...but also with a look of "when is this kid going to stop talking so I can get away from him?" thrown in. Still, he doesn't notice, I do. Maybe that is a blessing in disguise for him?

I guess it is just something that I need to get over as I am the one it bothers, and the one that is hurt by it. 

In brighter news A~man is on a special needs basketball team! He LOVES this even though he is REALLY unfamiliar with how it is played. My boy would be content to walk around talking to every single person in the gym. LOVE my boy! When he was younger he went to day-camp with a lot of the people participating and also plays baseball with many of them. In fact, I noticed that one of his team mates was a boy he went to kindergarten with. He is well received by this group of peers...of course on occasion I still see the "when is this kid going to stop talking so I can get away from him?" look too, but I do understand as my ears are tired at the end of the day.

Still, I will go put another band-aid on my heart and be thankful the issue is mine and that for the most part A~man's heart is not the one hurting. 

Do Over Days

I originally posted this last year on my work blog at Time4Learning.com but I decided that on occasion I would post some of my favorites from the past over here. 

Have you heard of them? These types of homeschool days are something that over the years our family has implemented, especially when having to deal with special need issues.

 Particularly in the past when my son was much younger as he had great difficulty controlling his words and actions. Basically, he often would not think things through before doing something. When this happened repetitively, which was often the case, something had to change in the day.

My daughter too, especially when she was younger, has had to have a restart to her day when attitudes and words have gotten sassy.

But wait! I cannot forget myself. Years ago I had severe PMS issues that would cause my normally calm demeanor to be short tempered. Children are not the only ones that may need a restart to their day.

What did we do? Sometimes I would suggest we start our day over or one of the kids would say they needed a do over. A little bit of grace goes a long way in turning a terrible, horrible, not good day around. If there were days when we did not do this and instead muddled through, the day usually ended up being completely unproductive and quite honestly draining.

Typically we would go to a quiet place alone (the key) and either read quietly, play quietly, or take a short nap. After a certain amount of time we would come back together and if needed apologize and ask forgiveness. Usually hugging would be involved too. If it was a homeschool day I would try to pick a fun activity like reading a book to them, doing some art together, or exploring our yard to give the day a fresh and positive restart.

Do any of your homeschool days ever need a do over?

I wish I could tell you...

....that our Christmas festivities have gone as smoothly as Thanksgiving's did. They have not. The excitement is doubled with having grandma and grandpa living nearby. (within 20 minutes!) I think we are fortunate as it is not exactly food related. It is schedule related, which I guess ties into meal times but it is beyond that.

With Prader-Willi Syndrome routine is very important. I try to keep to a concrete routine as much as I can but my brain doesn't work that way. I cannot plan out every minute of each day and definitely cannot plan it out for the week. That makes it sound like I do not have routine but for me it works like this- get dressed, breakfast, schoolwork, lunch, and quiet time. This all happens but not with an exact time. After we have a "quiet alone time" our schedule is looser to arrange for errands, interest led schoolwork, field trips, music lessons, and in the spring and fall, sports.

Without the holidays or special occasions like birthdays he seems to be okay with our schedule of events. When I have attempted to exactly plan out our week with him knowing every extra activity things tend to go badly. He will perseverate on the special events, which drives us all batty, and as we all know "things change". We have had vehicle issues the last 6 months so that has caused us to miss some events we would normally go to. We have had a lot of at home time which I do not mind, but A~man is more social than I am. ;) Plus, at times field trip dates change or have to be cancelled for various reasons.  I do see some progress in his thinking as I will say to him "things change" and he will repeat it to me and we are able to talk about the whys of how things change.

Consequently we have had a few REALLY big meltdowns in December. Like knocking my sliding laundry room door off it's track meltdowns. He hasn't been aggressive with us thankfully but we have had a few icky times. It does make me appreciate that this behavior isn't a norm for him anymore. It used to be for a few years. (and I was physically hurt a few times) Now? Once he calms down he feels remorse and apologizes. He has been doing this for a year when he gets out of control almost every time with absolutely no prompting. He asks for forgiveness which breaks my heart in two as I know he cannot help so much of it. What's a mom to do but freely give the grace needed plus a good supply of hugs for good measure?

Today my daughter asked if we had to do school work this week. *ahem* (in the past I say what days we have off during the holidays) I told her, when A~man was not within earshot that if she wanted to she could have the week off, but that A~man would be doing his work except for Christmas Eve and day. With his special needs and learning disabilities his day goes so much smoother if a part of his day is focused on homeschool help and as much routine as I am capable of. Now if it would only stop raining long enough for us to go see an awesome local light display!

Here are some photos I took today of A~man at his finest. Loving on our wonderful dog!

Totally rocking his pink PWS awareness shirt!!! (my boy LOVES pink :)

These gentle moments are ones I treasure!

Sometimes it takes...

your child to open up your eyes to what God wants to say to you. I've had a rough couple of weeks. Starting school up after a month break, getting sick, my own medicine changes, yada yada yada. I have just gotten behind with EVERYTHING. Add in the fact I need to start planning in our vacation that will be this fall. 

Today at the grocery store I saw him. Who is he? It's the minister of a church that my father in law went to a couple of years before he passed away of cancer. It is a simple (I mean that in a good way) and small church. The minister has a heart of gold and his mission is to help people in need. People that need food. I mean actual food. I will say he is very obese and in a wheelchair. I am not saying this to discriminate about people that are obese or in a wheel chair but something about seeing him strikes home in correlation with PWS. His desire is to make sure people have food. Can you see the connection?

 Anyway A~man, even though he was 5 when his pop-pop passed away remembers Pastor M...he is drawn to him as Pastor M seriously has a heart of gold. You can feel God's love surrounding this man. But sometimes when we go to the grocery store we want to get what we need and go home. Our days, even the good ones, are exhausting at times, dealing with special needs and normal life issues. So...I see Pastor M before A~man does and I try to avoid those aisles...as I want to hurry and get home. (Yes, I have my not so nice moments) But no. God has other plans.

We meet up in an aisle. A~man (who also has a heart of gold) sees him in his wheelchair and is instantly drawn to pastor M. At that moment I once again realize how truly holy and pure my son is, so much more than I could ever hope to be. You see, he takes the time to go over to him, ask how his wife and daughter are, and how HE is. Which in itself forces hubby and I to go over there and converse. How wondrous it is that a child that in societies eyes is disabled... is so much more compassionate and caring than I am. I am selfish, I want to go home and rest. A~man? He genuinely wants to know how pastor M is and his family. I strive to be more like that!!

I read things about trying to "cure" autism, cure whatever disability. I wonder if my son's many disabilities were "cured" would it take away this caring spirit also? I am probably in the minority...but as my blog implies...I learn so much from my son who has special needs. Sometimes it seems he is closer to God than I am. Does that make sense? 

Oh, and get this. Would you like to know what yada, yada, yada's various meanings are?  Sharing love, sharing mercy, acting justly and something to be known. Sometimes it takes a child to teach us all that.

Walk the walk...

Oh...and I am not referring to idiom games this time! This fall our family for the second time will be participating in a local Prader-Willi Syndrome walk which is the same month as our son's birthday. (he's going to be 14...eeek! :) With PWS we have to watch everything he eats, everything. Fortunately he has never been overweight but if he was not monitored it could happen easily and quickly. Individuals with PWS never feel hungry. They spend a lot of time thinking about food and when their next meal or snack will be. They also (I know it's a fact in my son's case) think about opportunities to forage food when it is available and no one is looking. Can you even imagine what it would be like to always be thinking about food? I know people are often humored by the fact that 75% of my son's conversations involve food or come around to the topic of food. People do not mean any harm in thinking it's funny, and I truthfully am not offended but seriously...can any of us really imagine what it is like to be THAT HUNGRY? 

I've mentioned our adult friend that has PWS (V) on here before. I remember quite awhile back on Facebook her posting on a Prader-Willi board saying that she wished her mom would lock food up. I think the reasoning it wasn't locked up was that she was so high functioning that the mom thought it would be wrong to lock up the food. At least that was my take on it. But, that is when we started making sure food was secured, and that we had an alarm for when he walked out of his room. Ever since then he has been sleeping through almost every night (he was getting up multiple times every night) and WE are sleeping better too. Yes, he has still manages to sneak food in the day time but it has gotten so much better. He actually reminds and thanks us when we set our hallway alarm.

The thing is I need to lose weight. No, I am not extremely overweight but I am overweight and it has been a gradual process since becoming a mom. I eat pretty healthy and we walk daily but I need to lose weight. How can I say anything about what my son eats if I am the one that needs to lose weight and he is the one that is a healthy weight? Before kids I was underweight...I do NOT want to go back to that at all! I like having curves. ;) But I have made it my goal to lose 20 pounds before the first of November. I know my body will feel better AND I feel I will be a better example to both kids if I walk the walk...literally. This is the first I have shared it in my blog but I started the first of August and have lost 3 pounds...so I am on my way and hope to share good results.

On a homeschool note our first week is done! It wasn't smooth and we tried our best to squeeze a couple night vacation into it...but got rained out. Thankfully we were able to get half our money back and we will try to go camping again if it ever stops raining. It was a really good week though and we celebrated Z~girl's 12th *gulp* birthday. I do admit we did some school on Saturday too with little complaint...OK A~man did a little but he is especially liking his online science curriculum and learning about magnets for kids. Tomorrow Z~girl is going to start her end of summer newspaper edition so I hope to share that soon!

worn out

It has not been a bad day. But I feel like that puppy up there. My daughter did her school today but my son with special needs did not. Not because he wouldn't but because we had so many things that HAD to be done today. He needs me right there beside him for most of his work, to keep him on track. One of those days that I am happy to say we got what we needed to, done. But school with son did not get done.

When everything was done we did decide to take the kids swimming. This has been something we have been doing over the last several months and sometimes we go almost every day. Sometimes I stay home and work, but today I made myself go. Swimming has been so good for both as it is something both of them are really good at! Also A~man has met up with a sweet girl close to his age that swims there on Mondays. She also has Prader-Willi Syndrome. It has also been nice being able to talk to the mom a few times. I have lots of online friends that are parents to children with PWS but rarely do I run into one in person.

Also, this past Sunday hubby took the kids to swim and one of A~man's teammates from special needs baseball was there. This young man is just a bit older than A~man and he has down syndrome. He is on a similar level to A~man (and likes to swim like him) and I guess they got along wonderfully! They swam laps together. OH, and he is a homeschooler too! I may need to go this next Sunday, I want to "recruit" them to our homeschool group. A~man needs some peer friends of his own.

I was glad I went today but I know the people at the desk probably think I'm the crankiest mom ever. By the time we leave swimming it's normally around 5 or 6...and I still have to make dinner. (although I will admit...hubby does sometimes too) When Z and I come out of the locker room, A~man is always standing chatting with the people that work there. Sometimes appropriate, oftentimes not. HAHA. Always though I am like "LET'S GO already!". 

They do not see the day that I have already had. Whether it has been a good day or a bad day, parenting a child with special needs is draining. No, I would not EVER change it but these people do not realize my son has talked non stop since he has woken up. Sometimes real stuff, sometimes questions over and over, or even just listening to him in the next room "talking" to himself. I hear talking all day long. I am a total introvert. I get my energy from what wee bit of alone time I get between 9pm- midnight. Yes, I really should just go to bed. But here I sit.

Worn out. 

thankful

Such a simple word huh? Yet sometimes I know as a special needs parent I can take the stress of the week and focus on it, instead of finding things to be thankful about. I REALLY try during these stressful times to find something to be thankful for. I think taking the time to do this is a necessity when you are dealing with special needs learning and special needs parenting. 

Last week was not good. It started out with me waking up in the middle of the night with what must have been food poisoning. That same day A~man had a med check appointment to get new prescriptions on his meds. Unfortunately due to circumstances I'm still scratching my head about, the pharmacy would not fill one of the medicines (they said they were waiting for approval), which resulted in him missing two days worth of a particular med.

What is A~man like without medicine? He is like a squirrel that has drank espresso. I do not know any other way to describe it. He bounces here, he bounces there, and he talks a mile a minute. (and people that know him already think he talks a lot!) It. Is. Exhausting. The energy that it takes for the rest of us to keep up with that amount of energy is incomprehensible unless you experience it. Yet, when he gets like this he is hilarious!! We went to the mall to walk off some of that energy, as it was too cold outside, and guess who we saw?

Yes, we saw the jolly man himself getting the mall ready for his visit after Thanksgiving. Now A~man loves Santa, well this Santa in particular (heehee I even found his picture with a google search ;) This Santa came to our house when the kids were toddlers, before bed, to visit on Christmas Eve. This Santa knows both kids by name every time we walk by him in the mall. Now Z~girl knows about Santa (although she still loves this guy) but I figured A~man would always believe in Santa. After A~man thoroughly chewed Santa out for setting up Christmas decor before Thanksgiving (he HATES that), he asked about the other Santa that is sometimes there when the real one needs a break. He asked him *snicker* if the other Santa was passed out. The hubby and I just looked at each other confused but I figured out he was asking if the other Santa had passed away. He explained, "that Santa last year looked awfully old!". The real Santa was trying to keep a straight face. As we walked off A~man said words I never thought I would hear him say- I wonder what that guy's real name is! It was one of those times you just really had to be there but it was hilarious...the whole Santa experience that day was a riot. 

There were plenty of not so funny moments last week too. With him being so keyed up he was on edge and close to a meltdown very easily. We also had to watch him more carefully as when he gets a certain look in his eye (that thankfully I haven't seen in months) he can do dangerous things. He will also go out of his way to do things to get in trouble. Yet, we trudged on and no one got hurt. LOL It broke my heart at the end of one day after an event (last week is a blur) he started crying. He was practically begging us to go to the pharmacy as he wanted his medicine! Fortunately we were able to get him it later that day.

He is back to his "normal" A~man self...well the version that has more self control, focus and is a little less bouncy. I miss the extreme humor he has with out med but he is much happier overall when he feels in control of himself.

Tonight we went to our second Thanksgiving Feast that was at our church. I do not think we would have been able to take him if we did not get his prescription refilled before the weekend. As always we told him we would get him a little bit of everything (I'm talking a tablespoon of many choices) plus a slice of pumpkin pie. It went so well. Following the meal was a talent show and I was surprised that it didn't bother him that there was food remaining on the tables while we watched the show. 

Z~girl played four songs on her violin.

This is A~man and his buddy T playing the Shofar . I am so thankful for this church. They are very accepting of differences. The variety of different kinds of people here is really neat. I have seen people (that I assume may have been homeless) come off the street to attend the service. It's the kind of church that you can just come as you are. 

Our Thanksgiving celebration at home is always very low key. We will take off Wed, Thurs, and Friday from "school work". (although we might fill up some of our down time with some learning activities. We have turkey and a few other special foods but we have learned keeping the meal part like any other meal at home helps the Prader-willi syndrome anxiety that can come with this holiday. We normally go for a hike after our meal and then go to the movies. 

I encourage anyone reading this to take the time during stressful circumstances and find something to smile about and find something to laugh about. I have found that humor makes it that much easier to find something to be thankful about.

Prader-willi syndrome awareness

The last 5 or so days have been a nightmare for my husband and I. Seriously. It's been a complete blur. I'm not even sure where to start. I have felt so weary...but today, as every other time of feeling powerless, God showed he was right there beside us.

A month ago A~man had to have a psychological evaluation done as it has been a couple of years and because he receives services through the state, and his yearly plan of care was coming up we were getting things in order. For reasons I still do not understand we did not get the results until last week. I was dumbstruck when I saw them. During the testing he was so cooperative for the 2-3 hours of testing, polite, and as appropriate as it is possible for him. We had thought that we were meeting the psychologist for the behavior part (this was more of an IQ/developmental test) at a later date. So to give the psychologist a heads up on some of the behaviors we experienced in the last couple of years he wrote them down as we do not like talking about them with A~man there. He is always listening and it cannot be good to hear a review of his past misbehavior. Especially since with PWS...some of them just cannot be helped! Also we filled out some types of questionnaire like tests based on his needs and behaviors.

As I said, for whatever reason we got the results last week when my husband went to fill out some paperwork at our service provider. They sat him down and told him. They told him that the psychologist recommended A~an be put in an institution. I am not in the least bit kidding. I have a few readers of my blog that know A~man and my family in person. Hopefully they will chime in and agree how utterly ridiculous this would be. This is something they did with children/adults with disabilities up until 30 years ago. Right before I was married I worked in an institution for a short time with the youngest they had and they ranged from 5-35. They were well cared for where I worked but to put my son and lock him away?

What was the Dr's reasoning? He said that he was a danger to my family. He has NEVER hurt his sister besides normal kid bickering and that is mutual and very mild. I have hurt myself a few times when I have had to restrain him. (disclaimer I am very trained! please never restrain your child without training.) In the past he has also slapped at me. That is spread out over the last few years and it's been over 6 months since that has happened. As a team my hubby and I have learned better ways to deescalate his behavior before it ever hits seismic proportions. We both work from home and we both share in the homeschooling and when one is weary the other steps in. It works for us. Evidently this Dr. hearing what we experienced came to the conclusion that we were merely treading water. Hogwash.

I won't say one of the particular behaviors that disturbed the Dr and our service provider. (unless you are a pws parent and want to know) The thing is the behavior can be common with PWS. PWSAUSA (Prader-Willi Syndrome Association USA) lists the problem on their resource page. The page I have linked is the basic facts wouldn't you think a psychologist and a service provider would KNOW this basic information?? Instead I feel like my husband was interrogated as if we had done something wrong. Fortunately we had been to his pediatrician at least twice for this issue and to another specialist to help with the underlying physical problem that caused the behavior. My husband ended up walking out in the middle of his meeting that day.

How did this affect us? We felt sick..and we were worried that the provider would call DSS thinking that we had caused his problem. I cannot remember the last time I heard my hubby sob like he did that night. Yes he sobbed! I do not remember the last time I have cried so much. We felt so helpless. What did we do? We gathered all of the information we could find about his issue at the PWSUSA website...and I found things in online medical journals. We became proactive and called his GAL (guardian ad litem) from when he was a foster child as she knows us well.(she became our advocate once again through this) We called his pediatricians and explained and got letters from them to give to the psychologist and service provider today. We got letters from a local merchant that knows our family well and from our pastor. Heck, we even called and talked to his old social worker from DSS! Just telling what they have observed from the A~man and what they observed from us as a family.

I didn't go today as I had to watch the kids but hubby went and he went fully armed. That includes a massive amount of prayer warriors and God was obviously right there beside him. What was there reaction? The service provider admitted he did not know hardly anything about PWS. I'm guessing all he knew about was the weight issues which isn't the main issue with the A~man. The psychologist also did a whole lot of back pedaling even though he said he KNEW PWS. We will not be using his report (we will find a different psychologist) but in the meeting he said that he didn't mean that A~man should leave our home. It was written down. Hubby left the 2+ hour meeting in peace...and brought that peace home to me.

I REALLY want to somehow make sure this doesn't happen to another PWS parent. Thankfully I knew that the particular behavior my son was having was pretty common because I was able to talk to a few wonderful fellow PWS parents on Facebook. I shudder to think what could have happened if my husband and I were not fully educated on the other issues that go along with Prader-Willi Syndrome. We would not have been able to advocate for him!

 Have I mentioned I LOVE my A~man???!!!

Stress for special needs parents

Recently I have wondered how parenting typical children compared to parenting children with special needs  stress wise. As parents we all have stress and obstacles. Several time a year we go through some really difficult special needs situations and we are currently smack dab in the middle of a HUGE one.

Today I had to go and talk to the case manager that keeps track of A~man's services and explain what has been happening this last month. I'm not a big talker, and to talk to this man about a VERY uncomfortable subject has drained every ounce of strength out of me. The anxiety I experienced talking about the issue hit a 9.0 on the Richter scale.  

 Meanwhile, he mentioned to me that he has recently discovered some major water damage to his home that he has only had a couple years that is going to amount to a lot of $$$. I feel bad for his family. What he has is a major financial hardship (btdt btw), and a disruption to his family, and mine involves yet a new challenging situation arising after thinking "what else could happen?" BUT I couldn't help thinking how I would trade my families current stress for his.

Mine doesn't involve any loss of money. Mine involves me getting very little sleep, when I do sleep I have nightmares, and my heart is hurting that what's going on can't be "fixed" (although we are arranging some new Dr appointments) and I'm clueless how to handle it. New things are popping up and I'm not sure if it is due to puberty, an imbalance (going to the endo to get some levels tested), him needing a medicine change or possibly some new stuff that was passed down genetically from his biological family. That leaves me looking for answers with a couple of doctors and possibly a counselor or child psychologist.The case manager suggested RAD. (A~man had very little physical contact until he came to us at 4.5 months old, it took him a LONG time to actually like being held as a baby) After talking to hubby and a good friend of mine though I do not think that is it. He has strong bonds with all of us.

I wonder. Do"normal" (what IS normal?) families have the same reactions to there everyday stressors as I do to my not so normal stressors? Does my body/mind get used to this periodic upheaval that can occur with special needs parenting? Also, due to the fact that we CHOSE this special needs parenting path, how does my journey compare with those parents that didn't choose this special needs path?

Oh and one last question. Has anyone seen my super mom cape? I seem to have lost it!