Autism Support Groups

As a parent of a child with autism, do you participate or belong to an autism support group? You can easily find groups on facebook, the Internet, or maybe from you local school district. 

I can remember the years I thought I could handle being an autism mom all by myself. But my days and nights were long. There was a lot of loneliness. Feelings of depression and anger. Thoughts of uselessness. There were also the days when I thought I was the strongest person at handling Puppy all by myself. 

But, what about me? What about me? No one ever asked how I dealt with Puppy and autism on a daily basis. I'd hear comments like, you are stronger than me, I could never raise a child with autism, he's just spoiled, stop with the time out and spank him, he's an angel and so are you, you're doing great, and keep up the good work. Those are the most common remarks and they are just too many more to remember right now. Mostly the comments were giving me a reason to be stay away, stay alone. Keeping my distance from family and friends must have made everyone think that everything was just fine and dandy. But it never was. There was never "me" time. It is all about Puppy, 24/7. No one really wants to hear how you are doing. No one really wants to know how you do it from day to day. No really wants to hear your needs and wants. 

I was wrong. One day a flier came home in Puppy's backpack. It was a support group for autism. Huh? What does that even mean, I thought. I wasn't sure but I was curious. This came years after learning that Puppy had autism. And suddenly from nowhere they were there, support. My confusion was that I expected it was an out of the school district learning center for Puppy. I wasn't going to let a chance get passed us without first checking it out. 

So we anxiously arrived to the meeting on a Wednesday at 6:30 in the evening. We were greeted with smiles and shown into a room with about 8 other parents and some kids. Some parents were there alone. Hmm? I thought it was probably a gathering to find out how many participants they could find to attend this support center for our kids. Nope, I was wrong. A person stood up in front of the room and started talking. She was also an autism mom, and welcomed the families. She asked us to introduce ourselves and our child. After that she said, "I see some new faces. We are going to continue going around the room one at a time and tell us, how are you doing?" I didn't understand the question. I thought she was asking for information on how our kids are doing in school. But the first parent started speaking and I heard story after story about the daily lives of the families present. There was some head nodding and uh-huh's from other parents...and from ME! It hit me. I can speak about ME! Someone wants to know how I am doing. I felt great relief, comfort. I felt a weight lifted off my shoulders. And every other parent in the room knew exactly what I meant and what I was going through. And I knew what they were going through as well. There was this strange unity in the room. I hadn't felt that before. 

Autism parents, brothers, sisters, uncles, aunts, cousins, grandparents, anyone...please find some time to attend an autism support group meeting in your area or join a group if even only on facebook or over the Internet. 

I also understood how to have a greater connection with Puppy's teachers and aides throughout the years. They were there all the time, I just never reached out to them for support. My distance kept me silent and alone. But not anymore. Help in the form of shared experiences was my new comfort. I slowly visited several local autism support groups and found the one that was right for me. I still go back to the other groups now and then, and keep friends with some of the parents from each of the groups. 

Support is defined to give assistance. Different types of assistance come from a support group. As I attended more meetings, I was better informed as a parent, because some of our meeting included visitors or speakers, and introductions to therapy providers. I found out about programs for the disabled. Programs that I needed to sign up Puppy for to be on a waiting list for aid into adulthood. I found out about centers for self-help skills after high school. Respite and in-home training were also introduced to me. All this information was exactly what I needed and I didn't have to look for it, it came to me at my support group meeting. I wonder now if I would have learned about some of these programs if I had not joined a support group.

So now, I was able to accept my challenges knowing I was not alone anymore. I wasn't the only one going through the headaches or Puppy's behaviors. Now I knew that much more about how to share; and with sharing came experiences from new friends and families and I, myself was sharing my life and my life with Puppy.

Implusive Behavior

Has your child ever done something...out of simple impulse? I bet the answer is, "yes, everyday". Why do you think they did it? They did because it's an autism related characteristic just like echolalia or stimming, as well as being an ADHD behavior.

And what is an implusive act?

Impulsivity (or impulsiveness) is a multifactorial construct that involves a tendency to act on a whim, displaying behavior characterized by little or no forethought, reflection, or consideration of the consequences.

I touch on this today because I was imagining myself as a young child doing impulsive acts and getting in trouble. Of course I was always reminded, "you know better."  But does a child with autism "know better"? 

I can tell my son, "don't do that, you know better." But Puppy will probably it again, and again. There is no thought going into the action or behavior. And I'm going to say that Puppy definitely is not thinking about the consequences.

I'm including a link to a webpage I found that gives excellent examples and definitions of impulsive behaviors in children, any child.

The Child with Attention Problems - Impulsive Behaviours

Lets' give our kids the benefit of the doubt that there may not have been any specific reason for their impulsive behavior and remember this when handing out consequences.

However, as parents we need to teach, teach and teach with patience, there may be consequences.

Damn Obsessions (Final)

Okay, I dragged it out and for some reason I'm not making time to finish this story off.  I'm going to cut to the chase and ignore the details. Here we go.

Puppy went next door in the evening of the 8th to play with the kids since they were in the backyard. The family was cooking out and let him in. There were a few family guests there and all seemed to be going well. I had told Puppy to come home early because he wasn't invited for the cookout and to my surprise he complied and was home around 7 P.M. Then he asked if he could go to his room and rest then shower. I wasn't going to disagree and so the evening ended on a good note.

The next morning he was up at his usual 7 A.M. and dressed. He wanted to go outdoors but isn't allowed to unless I'm watching him. When a few hours went by and we had gone through our morning routines, he comes inside and sits across from me.  He says he has to tell me something and is looking at my face for an expression. I see his eyes moving back and forth as if taking a hundred pictures. I try to make my expressions as exaggerated as possible so he can tell the difference, and he's caught on pretty well. So first of all I'm as calm as can be to make sure he confides in me. Then he hits me with the information that he has another box of cigarettes. He's been picking them off the ground for years. He asks if I want to see it and hands it to me with a grip on it so I need to pull it from him. He quickly says it's his and wants it back. Surprise! THIS box has eleven cigarettes in it!! I can only imagine he swiped it off a table at the neighbor's the night before.

I talked to him about right and wrong and very wrong and super duper wrong. I may as well been talking to the wall because he just kept shaking his head and asking for the box back because they were his, in his eyes. I hid the box during his pacing back and forth and managed to keep it away from him permanently.

My son, the cigarette snatcher, picker upper. This damn obsession is so strong and overwhelming to him. I wish there was an on and off switch. I am open for any advice.

First baseball practice

So one of the support groups I belong to has decided to create a summer activity for our kids but with the help of a councilman, she has received some funding to make it a citywide event for any and all special needs children between the ages of 3 to 21 years to join. Registration was two weeks ago and I saw about 20-30 children were signed up. Practices are scheduled for late June, but there was discussion about making two practice teams, one for those who live on the North side of the city and one for those on the South side. So to get feedback and a division of children and families, there was a quick meeting Wednesday evening at the park not too far from our subdivision.

Batter up! 

I picked up Puppy from after school care and hurried over to the park. There were already about 15 kids there and one coach.  They had set up and were practicing batting and running. Of course we get there and Puppy is all about not wanting to do anything, just sit on the bench and watch. He was complaining about the heat and too many people being there. Shortly thereafter the kids came off the field to take a water break. At this time I talk to him asking him to go give it a try so he can tell his teacher about it the next day. He finally gives in and goes to try batting, and he did great, ran to first and the rest went equally well and smoothly.

    

Puppy makes it to First base.

Second base

Third base...

       

and he makes it home.
Way to go Puppy!

When he was back at the bench he started to get fussy and asking if Ms. H would be coming to meet us at the park. I'm guessing he wanted someone else to see him play to make it valid. I said yes, and all of the sudden he says he can't stand her and doesn't want her there. Don't worry it's not the first time he does this, but it's one of the few times he does it in public. She gets there and he comes close and tells me to ask her to leave and that he's going to have a tantrum if she gets near him. I can't help but roll my eyes because I know this is already escalating into something bigger. Sure enough, he tries to bang his head on the fencing unknowingly that cyclone fencing basically bounces back, so he was disappointed. I looked at him and he started mumbling bad words...and I said, "Let's go."

When he was back at the bench he started to get fussy and asking if Ms. H would be going to meet us at the park. I'm guessing he wanted someone else to see him play to make it valid. I said yes, and all of the sudden he says he can't stand her and doesn't want her there. Don't worry it's not the first time he does this, but it's one of the few times he does it in public. She gets there and he comes close and tells me to ask her to leave and that he's going to have a tantrum if she gets near him. I can't help but roll my eyes because I know this is already escalating into something bigger. Sure enough, he tries to bang his head on the fencing unknowingly that cyclone fencing basically bounces back, so he was disappointed. I looked at him and he started mumbling bad words...and I said, "Let's go."

The entire walk to the truck was just so peachy with him screaming foul language in Spanish. Luckily, no one paid any attention because each parent had their own hands full watching over their own child. Ms. H followed us to the parking lot and we headed home. On route he was still screaming that he didn't want Ms. H to go to our house. The bad words were so colorful with him taking turns in English and Spanish. Then he mentioned he was repeating words another ex-classmate usually says. So I called him by that child's name and he was furious. So now he's banging his fist on the door window, on the dashboard, on the arm rest, and finally it ends with him biting his hand. However, it must have been a really strong bite because he started to cry and yelled it hurt. Keep in mind he has braces and it only makes it easier for him to break skin.

We had made it home. Once he was a little calmer, he looked at me and apologized. He wanted sympathy for his injury. He leaned his head on my shoulder and said he was nervous. What would his teacher say when she sees his hand? What will his consequences be tomorrow? So much goes through his mind in such a short period. I can't imagine the mental struggles he must go through all day.

Of course he then started up again once we got inside the house because Ms. H was now with us. But he just stormed up to his room, closed the door and stayed there talking to himself. This lasted about 30 minutes, but only because I decided to open the door to check on him.  He had been pacing back and forth, nothing more, but he was nervous and he was about to start escalating again. We sat down together and I tried my best to explain that we can't change the past (he doesn't understand past though), so move forward and don't repeat the biting and swearing. He was probably just satisfied with the fact that I did not express anger. Maybe I should have, but everyday teaches me and reminds me that he mimics and he would indeed mimic my anger if he saw it, maybe not today but someday. He politely gave me a kiss on the cheek and started making his way to the shower and began his evening routines, then a sweet "Good night, Ms. H., I love you." and "Good night, mom, I love you."  Another day is now behind us.

We make a deal at Walmart

And so we made it to Walmart yesterday afternoon. Puppy was in search of a wallet that cost $3.22 or less. I knew there was no such price, but telling him this was not registering. He had to see for himself because I’m pretty sure he thought I was lying.

We walk in and he asks if he can go to the wallet section. I told him he had to stay at my side today and we would go together because kids should not be walking around the store alone. He complied and we started filling our basket of items.

Then, he saw we were close enough and says, “Now can I go see?” I tell him its okay and to be careful not to make a mess and to put everything back like he found it. I find him looking and moving wallets this way and the other. He is specifically looking for the Velcro wallets because he already knows they aren’t too expensive; and he going to get a wallet, damn it—even if it’s a cheap one. But as he starts to sift through them, he sees that the price tags read $5.00, $9.00, and $12.00. He is disappointed because he knows we made a deal. The deal was if he had enough money he could buy one, if not enough money then he couldn’t get one. It must have taken him about 10 minutes (which felt like an hour to me) to look at practically each and every wallet at the two sections the store had. And it felt like another hour to get him away from them.

He did a bit of whining, as we continued shopping for groceries. But I asked him to calm down and if he couldn’t we would have to leave the store because tantrums are unacceptable. I grabbed my purse and put it over my shoulder saying, “Let’s go home.”  He took a deep breath and said he would behave and he didn’t want to leave. 

We were basically done when we walk passed the jewelry and sunglasses. He turns and says, “I want a bracelet.” “I have money.” Quickly, my mind brainstorms and I think that if there is an inexpensive bracelet, I should let him buy it so that he could spend his money.  We look and look…and finally come to an agreement.  It cost $5.00 but I would put the difference because this was not a wallet. It would be worn on his arm and not put in his pocket, or so I hope. Time will tell. He’s happy, I’m happy he no longer has money and we go home happy with Puppy sporting a new wristband.

Understanding long term goals

I don’t know if I’m imagining it, or if Puppy actually understands something about having his ultimate desired prize.  His obsession with having a wallet is taking him to a place that he hadn’t been before. Making decisions that will be permanent or long term has never been a part of his world. Yet, this morning he was talking with me and he was repeating phrases he’s heard a hundred times. But this time he spoke them in with an order and accepting manner.

“Mom, I’m not going to carry anything in my pockets. Those are the rules. I need to concentrate and focus in school. I need to behave and count the days. No more paper wallets. No paper. I will get my wallet on my birthday. It will be the perfect wallet that I want. We will go to Kohl’s and buy it if I have good behavior a lot of days until my birthday. I will keep it for a long time like my uncle and Grandpa. I cannot be changing. I can only have one wallet.”

I have waited for this day to come…and whether he meant it or not, it was music to my ears. He has been listening all this time. I was very proud of him for being able to put those thoughts together. I still caught on that it was part of his 24/7 obsession with wallets and therefore, by talking about wallets he is probably feeding his need in one way or another. He doesn’t have one on him, but it is forever on his mind. What a strong distraction it is. I am even more proud of him for living with the ups and downs that surround his obsession.

Special Olympics 2012, Day One

This year’s Special Olympics has come and gone.

The two day event went a little differently this year. For starters, it was the first year I didn’t get time off from work to watch the competitions. Puppy wasn’t too happy about that and even voiced that he didn’t want to participate, in his words, “I don’t want to go outside today.” I was hoping that after his morning call to my sister on Wednesday, he would get his pep talk and be convinced to get on the bus, go to school and change into his uniform for the events. Luckily, it pretty much happened that way. His teacher wasn’t going to let him sulk or stay in the classroom alone while they all went to the field.

On the first day of the Special Olympics, he did fine at the 50 meter run. In pictures that were taken by another classmate's mom, I see he was grouped with 4 other kids, him being the tallest and biggest. I think those little runners had an advantage over him…just saying. He didn’t place and came in 4^th or 5^th. 

It was it long day in the sun for Puppy though. His after school routine was changed, too. He was dropped off at my parents’ house after school. My sister was there and asked if I would like her to take him with her to my brother and his wife’s house until I got out from work so I wouldn’t have to deviate further from my route home. I got there and he greeted me like he usually does. He was excited to tell me about his day at the Olympics and how he ran as fast as he could to get his ribbon.

I sat down on the sofa to visit with my sister, my nephews and niece. Puppy on the other hand, was ready to go home. When I told him we’d leave in a while he didn’t like it, but waited. My brother got there, then my sister-in-law, and so I was catching up with them as well. By now Puppy was even more bored and asking to leave again. My sister-in-law asked us to stay for supper, but still…Puppy wanted to leave. When I said to him we’d leave after we ate, he took a deep breath and walked to another room and screamed he was going to bit himself if we didn’t leave. I told him soon, let’s eat first. And he took his hand to mouth and bit down as hard as he could. His braces left a terrible mark and open wounds on the backside of his right-hand. He started yelling, “I bit myself hard!” “It hurts!” I went and found him sitting on the bed crying with his hand in the air. Puppy’s first response was he’s sorry. He knew it wasn’t good behavior and figured I’d be angry. I was, but it was done. My instinct is to comfort him. It may not be the right thing because generally it was giving him attention. But as I saw it, my attention did not reward him and we were not leaving. Instead, I did comfort and his wound was cared for with ointment and a band-aid; and we walked to the kitchen to eat.

I read his face and saw embarrassment. But he tried to make small talk with others just the same. By this time Ms. H had arrived to meet with us for the evening. He sought her undivided attention for a while before asking to go outdoors. He was fine for the remainder of the evening. This was the end of day one.

What caused his tantrum? I will never know. I can take guesses. I can speculate. But Puppy has autism and can’t tell me himself why he turned to self-injury. Something triggered it, but looking for attention was not it, because attention does not take him to another location like he wanted. He wanted to go home and probably wanted some of this day to have routine to it and ultimately…none of this day was familiar or routine to him.

Puppy is doing well now and looks down at his hand. “Why did I do this, mom?” I don’t have an answer.

Doing pretty well

Puppy is doing much better since I started the changes in his medications last week. His teacher tells me he is a more pleasant person, talkative, responsive, and overall happy.  These words are music to my ears. He’s come such a long way from the deep darker side episodes of repeated tantrums and meltdowns. 

He has also become a persistent debater whenever it comes to him wanting or requesting a new wallet, or just wanting to modify his present wallet with tape to create new sleeves (which is everyday); or arguing that his dirty jeans with the rip on the back pocket that shows the wallet are not really that dirty and he HAS to wear them because they are his favorite pair. And now two pairs have rips, so he has two favorite jeans that he switches back and forth. Oh and did I mention the rips were made by scissors and not wear and tear? That’s just Puppy.

I am actually seeing progress in his weekly spelling words being put to use in his everyday conversations. I beam with pride whenever he is studying and he makes random sentences with the words; it reassures me he has understood the definition of the word. 

So I can say that as long as there are no more unannounced visits from the police, or torn jeans, we are doing pretty well.

Another Doctor's Visit

Puppy and I made our scheduled quarterly doctor's visit on April 24, 150 miles away just so we can see a doctor who will take the time to listen and understands my son.  We had company on our trip this time; my older sister also had her doctor's appointment just down the street from ours so we carpooled.

After driving around the Medical Center district of San Antonio and grabbing lunch, then taking my sister to her appointment, waiting until she was done, then heading out to my niece's apartment for a brief rest and leaving my sister there; Puppy and I headed out again to make our 4:30 p.m. appointment.

The place was packed with limited sitting space. But there are several psychiatrists at this center and each one has their own patients waiting in the same lobby. So in various increments the place was packed and then it was emptied again, and repeated. We didn't get in until 5 p.m., but this was not the norm as we are usually in within 10 minutes after arrival. I didn't mind though because we were almost 30 minutes early to begin with. Besides, it's always a pleasant visit when the psychiatrist takes her time to start with reviewing Puppy's file and notes taken, begins asking questions and listens to both of us while showing interest. Puppy has allowed himself to interact with her more often and it makes me feel better. Even though he might not understand what the doctor or I are saying, we are talking about him; and he tries to explain why he did things or tells her that he's keeping his hands together and being really quiet. I suppose I don't remind myself often enough that he hears everything and is understanding that our talks are mostly about his behaviors.

Our conversation took us to discussions about some of the behaviors Puppy has been expressing. I was trying to describe anxiety and nervousness, but she in return gave me examples of the both behaviors and we agreed that what I thought was anxiety, wasn't. Afterwards, we decided to make a minor change in his medications and I will monitor him. 

I started him on the new dose yesterday. I sent a text to his teacher to inform her of the change and she told me he was in a very happy mood, talkative and complying with all his work requests. I sighed and crossed my heart that this continues and this change is all he needed.

Puppy's weekend

Here we go, just like I said, I blog whenever something happens…and it did.

Our weekend was going rather smoothly with the usual small tantrums or rather, some small rebellious tactics from Puppy whenever he didn’t like the answer I gave him. But I'll go over our weekend in a little more detail.

Puppy did well at my parents’ after school on Friday.  I decided to withdraw him from daycare on Fridays, and he'll be left off by the bus at my parents' unless I see that there are problems arising from this new routine. But he generally loves being outdoors as much as possible; and this is the perfect place for him to do just that. We also hung around at my parents’ to attend a small birthday party for my nephew with family and friends that evening.  Everything was fine then, too. It was a long day for all of us. Once we got home he fussed about taking a shower so I allowed it for the following morning.  

Then Saturday came with an early rise since he had to shower before going to the orthodontist for an 8:30 a.m. appointment.  Thankfully, this also went off without a hitch and we were out the door by 8:00. We didn’t even wait 10 minutes before Puppy was called in and seated. Although it took a little while for the doctor to actually get to us, it was worth it. I was told that because a wire was not placed on his braces back in February when the dental appliance was first put on, there was no change to his upper teeth. However, since he had the upper appliance since February (See Dental Visits), I was able to plea with the doctor to remove it until further notice when we are ready to start another procedure. Puppy will now be able to speak more clearly and eat with ease instead of having his food always getting stuck between his upper palette and the dental appliance.  He was certainly a happy camper about this and gave a huge smile when it was off. We will be back in a month to see what’s next on the schedule.

Once we hit the streets, I texted my brother and asked if he had breakfast ready. My sister-in-law had put two “lenguas” (cow tongues) in the slow-cooker overnight and I was looking forward to having some that morning. I picked up a 12-pak of Dr. Pepper and headed over with Puppy. It was delicious! We had a nice visit and then headed home to begin chores with Ms. H. Even this went all right. Puppy helped by vacuuming his bedroom as promised a few days earlier. And he stayed out of the way until we called upon him for hangers and such.

When all the laundry and chores were done, he was just itching to leave because our neighbor from across the street had been working on a project in his backyard all afternoon and I wouldn’t allow Puppy to go over. I’ve stopped allowing Puppy go over to this neighbor’s house because this older man smokes. Cigarettes are Puppy’s second obsession. It consumes him just as badly as wallets do; and that’s too much for Puppy to handle. He will want to make pretend paper cigarettes or paper boxes, all from just watching someone else smoking. But we were able to escape without further mention of the neighbor and headed over to my parents’ house.

That afternoon and evening went very well with Puppy having a good time with family. When we got home at around 10:00 p.m., I saw the backyard gate to the neighbor across the street was open; and he was still working on some carpentry. Puppy also saw this and debated with me for what seemed like an eternity, but really it was about 15-20 minutes and still longer than I wanted a debate to take, but ignoring him was not working. I suppose he finally realized I was not changing my mind and lastly gave in to staying put and going to bed. It’s on nights like these when he is so determined to get his way, I’m so exhausted from the mind games that I can’t fall asleep for fear that he will get up after I’m in bed. It’s not amusing but I was thankful it was Saturday. 

Sunday started like most, early to rise. Puppy was ready before me and went downstairs to fix himself a bowl of cereal. He was done by the time I came down.  And then it began again. “Can I go across the street?” “He’s outside in the backyard.” I asked him if the gate was open and he told me it was. I know I shouldn’t have let him go, but the man would be busy and hopefully not smoking so early. I gave in and whispered only for a little while. 

I proceeded in preparing my breakfast and turned on the laptop for some morning reading. I remember having finished eating when Puppy came back inside and said, “Mom, the police wants to talk to you.” I was confused and wondered why would he say that? Duh, because there was a police car parked in front of our house. I was still in pjs but I met the officer outside as he approached the door. I asked if I could help him, and with Puppy standing next to me, he asked if this was my son. I said, “Yes, why, what is the problem?” He asked, “Is he okay?” I answered, “Yes, he has autism, but he’s fine.” He said, “Oh, well I found him trying to open the gate to the house across the street.” I turned to ask Puppy, “Why were you doing that if you told me it was open and the man was outside?” Puppy lifted his shoulders. I asked him, “Why did you lie to mom?” And he replied, “I’m sorry.” With that, the officer just told me to keep a close watch on him and left. Puppy was so nervous so we went inside and sat down to talk about this incident. I tried to explain that the neighbor probably called the police himself because he doesn’t like kids hanging around his house, especially when he’s working. He's just a grumpy old man and Puppy should not be there because he smokes. My innocent Puppy promised never to ask to go across the street. Sadly he was shaken up a bit with the police visit. I found out days later that the officer questioned him before asking him to get his mom. I'm guessing we won't have any more problems with "that" neighbor, we will be staying on our side of the street.

100 Days, Done!

Puppy had a terrific day yesterday (Friday).  Why? Because he was working harder than ever to complete his 100th day of good behavior.  With that behind him, his teacher will be coming over to our home this afternoon to return his wallet. The wallet is a large part of him; it completes him.

So because I am too anxious about today's event, I decided to share a piece I found from a facebook page I follow. Have a great weekend!

Single Mothers who have Children with Autism

‎6 THINGS YOU DON'T KNOW ABOUT SPECIAL NEEDS PARENTS.

1. I AM TIRED. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I AM JEALOUS. It's a hard one for me to come out and say, but it's true. When I see a 1 year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I FEEL ALONE. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2 year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I WISH YOU WOULD STOP SAYING, "RETARDED," "SHORT BUS," "AS LONG AS IT'S HEALTHY..." I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I AM HUMAN. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I WANT TO TALK ABOUT MY SON/IT'S HARD TO TALK ABOUT MY SON. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should be's" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

- Maria Lin (via huffingtonpost.com)