Isolation

One of the more difficult aspects of having a child on the autism spectrum is how isolating your life is. This isolation is not instantaneous. It creeps up on you slowly.

When I first started having my suspicions that Xander might be autistic, everyone told me I was being paranoid. “He’s so sweet!” “There’s nothing wrong with him” “He’ll talk when he’s ready.” These were things that were said, consistently, whenever I would raise concern. It was the first moment I remember feeling world’s apart from my family and closest friends.

Once Xander was diagnosed, I threw myself into his therapies. I drowned myself in research on every technique, vitamin supplement, and alternative education plan to help my baby. It was a hardcore coping mechanism, that drew me even further away. I was cold, to everyone but my therapy team and my son. It was a dark time, and I wish I had been able to embrace and lean on others, rather than fight so hard to do it alone. A big contributing factor to this, was the overwhelming amount of guilt that I felt. As a mother, there is no explaining how devastating it is to hear that there is something “wrong” with your child. It doesn’t matter what it is, how major or minor, it is your fault. I, to this day, have never felt any emotion as strong as the guilt I feel for Xander having autism. It’s irrational, and unexplainable, unless you’ve been in this type of situation.

In addition to the personal isolation, there was also the joy of being publicly outcast. Taking Xander to the park was a nightmare. Putting him around TD kids was the number one way to showcase just how far behind he was. Kids, and their parents, were cruel. I cannot count the number of times that I saw parents look sideways at my child because he was stimming, or a child ask him “what’s wrong with you?!” because my son could not verbally respond to his question. It hurt in every fiber of my body, god, it hurt.

The turning point in this cruel game of isolation was countless phone calls with a fellow autism momma, and Xander’s social group. The woman whose son I was working with when Xander was diagnosed, has three boys that are all autistic. That woman was a lifesaver. Literally. She is the ultimate warrior mom, and I strive to emulate her strength. She related to everything I was going through, and it was such a comfort. Xander’s social group was the same way. Once a week, for an a hour and a half, I got to feel normal. These women all shared the same struggles. We all had been hurt by the actions of TD people. We all related to the inability to walk down the freezer aisle because no pint of ice cream was worth the mega meltdown the fans in the freezers would cause. There was comfort in our shared pain. It made me realize that I wanted that comfortability with the people who were involved in my everyday life. It’s one of the main reasons that I started this blog. To extend the olive branch of understanding.

It is, and always will be, a struggle to remain open and balanced. The self induced isolation is hard to push away, as many times it would be so much easier to shut everyone out. The tragedy there is what we would miss. So, be patient on those days where I am cold. Those are the days where I need you all the most.

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The TD Sibling

The choice to expand your brood is always tricky. There are so many potentials to weigh; is your first child ready? Is it a good time in yours and your partner’s lives to have another child? Do you have the financial ability? When your first born has autism (or any disability for that matter), this decision becomes even more “grey” When the topic of more children was presented to me my answer was a definite NO! Here’s the point that I get sideways looks when I’ve had this discussion in the past. I love Xander. The boy taught me what love really is. He has made me a stronger person, and I am a better human being because I’ve had the opportunity to be his mom. That being said, I would not wish his struggles or our experience on anyone. Autism is cruel, and confusing, and full of heartache. Our road to success has been littered with set backs so harsh that just the memory of them makes me want to break down and cry and we are no where close to the finish line. As a parent, I have no answers. No where to place blame. No sure fire way to fix the issues. I couldn’t stand the thought of another child having to go through the same things Xander had been through. I stuck to my guns for a long time.

 

Looking back, I realize I was scared and still healing. I wasn’t ready to consider the idea that I could produce a child that was TD (typically developing). As a mother, I had branded myself inadequate. Research and data and doctor’s didn’t matter. I felt as though I was responsible for Xander’s autism. What a revelation that was!

 

Through further conversation, and lots of reflection, I realized I was being a bit selfish. I had never wanted just one child. Xander was of an age that he could benefit from a sibling. I finally realized that it ultimately came down to the what ifs. What if this new child was diagnosed ASD? At least I knew every early warning sign, and he/she would be closely watched. I was more equipped to deal with another ASD kiddo than I was a TD one, as autism is all I’ve ever known. I also very much liked the idea of Xander having someone else, besides his parents, who was on his side. I’m no fool. I know I won’t be here forever, and when I’m gone I don’t want my child to be alone. So, we had decided. Baby number two!

 

I’d love to say it was unicorns and rainbows and everything went perfectly, but that just wouldn’t be in tune with the rest of my life. After trying for a few months, I was pregnant. We immediately told our friends, family, anyone and everyone who would listen. 7 short weeks later, I miscarried. There are no words to describe the pain. I felt as if my body had betrayed me. I required surgery to remove the pregnancy, only furthering my despair. I gave up. Big time. I focused on Xander and his therapy, and said to heck with babies. It’s usually when you give up completely that things start to mold into place. 4 months later, I was completely shocked to find a pink plus. You’d think I would be ecstatic, finally! I refused to be excited. I demanded (quite forcibly) that we not tell anyone. I couldn’t handle it if something went wrong. Weeks passed and so did ultrasounds. It took me a long time to get excited. I was certain my body was going to mess this up too. At 18 weeks along, I found out we were having another boy. It was only then that I allowed myself to start to get excited. Who was this little guy? Who would he look like? How was Xander going to connect with him? Would they do dirty muddy boy things together? I wanted to know it all.

 

December 15, 2010 after an excruciating labor and delivery, Gavin was finally here. He was the epitome of perfection. Like any mom, I scanned for 10 fingers and 10 toes. Everything was intact, and I felt proud.

 

The differences between my boys were apparent from the very beginning. Gavin was so alert to all of his surroundings. His eye contact was amazing, and he didn’t want to be anywhere other than your arms. I thought I was being overly aware. There was no way that just a few months in, I was seeing such differences. Oh, but I was. With the realization that Xander had been different from birth mixed with rampant pregnancy hormones, I ended up with a wicked case of postpartum depression.

 

Months passed, and the boys’ pediatrician kept a close eye (as did everyone else in our life) on Gavin. Not only was he hitting milestones, he was hitting them early. He was so eager to get up and go with Xander. It was incredible, joyous, and heartbreaking. As Gain’s first birthday approached, we all had started to relax. There was no doubt that he was not autistic. Surprisingly, I found his “normalcy” so difficult to cope with. I had it so set in my brain that the likelihood of him being autistic was so high, that I didn’t really realize he could be TD, and he is. I felt a massive internal battle as I watched my 18 month old do things my 5 year old still cannot do. I celebrated and cheered, and felt guilt and sadness that Xander wasn’t there yet.

 

Gavin is everything I could have ever hoped for in a son, and a sibling for Xander. He is so happy and affectionate, along with a hefty dose of stubborn. He doesn’t get nearly as much one on one attention as he should. I have had to force myself to be more “fair” with my attention. Xander’s behavior struggles and therapy schedule, and doctor’s appointments, and district meetings are consuming; emotionally, physically, mentally, and above all they consume a massive amount of time. I have had to remind myself, that being TD is not an excuse to cut that time that he needs. That he needs help, too. He needs my attention, and love, just as much as Xander.

 

As we near his second birthday, and I watch him continue to grow, I am hopeful. I hope he continues to grow, and blow milestones out of the water. I hope that he knows I am not sad that he is normal, I am sad that his brother will struggle. I hope that he knows what a light and strength he is in this family; not just for me, but for Xander. I hope that he will be an exceptionally accepting human being because of our family situation. Finally, I hope that he knows he is loved. That a lack of autism does not equate less love. That time management is still something I’m working on, and that simply because he has less that requires my immediate attention, that it does not mean I care for him less.


Childhood Innocence

All too often, we forget the innocence of our children. I had one of those moments tonight with Xander.

He had a rough day at school and an even harder time getting through afternoon therapy. He has had one of those days where nothing is right, and he’s just down right cranky. A true test of parental patience kind of day.

We were sitting in the living, with TLC’s show Abby and Brittany on in the background. For those unfamiliar with the show, it follows 22-year-old conjoined twins, Abby and Brittany Hensel. They each have a separate head, but their body is joined. Each twin controls her half of their body. It’s incredibly interesting and inspirational to watch these women conquer life, all while overcoming their struggles with optimism.

Xander was playing cars, and finally looked up and engaged with the TV. Without hesitation he said, “I wish I had two heads…” and trailed off back to his cars. Surprised, I asked him why. He was already in tune with his cars again, but I pressed forward asking him again. He responded with, “THEY look nice.” I sat back in awe. My child, who has had so many stares and whispers when times were rough, thought these girls looked nice. The thought of having two heads didn’t freak him out, or cause him to stare or make faces. He saw them as two people, who happened to share a body, and that they looked like friends.

This encounter with him really made me think about the innocence of our children. Even at 5, I see other children looking sideways at Xander when he has a hard time. I think it’s normal to be confused when something outside of your normal inserts itself. The real question that this opened up is when do children hit that stage where their normal is established. Where they are no longer able to so freely accept people who are different than them, wether it be physically or developmentally? As an adult, I looked at these 22-year-old conjoined twins with curiosity, and wonder. How do they drive a car? How do they prepare food? Do they have different tolerance levels to alcohol? If one is sick, is the other automatically sick too? All these questions, and my son simply thought they had a built-in friend to be with all the time. It was a definite reminder that where having questions and seeking answers is never a bad thing, sometimes we need to slow down and appreciate the simplicity of things.


The IEP: The Ultimate Game of Chicken

A little background on what an IEP is. An IEP (Individualized Education Plan) meeting is right up at the top of the list for most stressful things you have to do when you’ve got a child with autism. This meeting typically includes your school district case manager, the teacher(gen. ed and special ed), the speech therapist, the occupational therapist, your ALTA (or state case manager), and your ABA therapy team. Typically, they’re an annual meeting. During this meeting, you set up services for the school year. This can be classroom aide support, coordination and communication between school and home programs, frequency of speech and OT services etc. They’re a big deal. Big deal=super stress for parents. That being said, lets dive in to the IEP that happened last week.

Prepping for this meeting was like preparing for battle. I mapped out my plan of attack based on everything I thought these people might say. I was armed with data from my home program, prior assessments for his speech and OT issues, and a serious mama bear attitude.  Despite having been through many of these meetings due to the lawsuit against the former school district, I didn’t know what to expect. This was the first IEP meeting with a brand new district. With people I didn’t know, that did not know Xander. I thought the worst, and based off of my experience, the worst was typically the reality. I tried to stay neutral, but it was not working out so well.

The IEP was set for a Friday afternoon, and I don’t think I slept much that whole week. Those closest to me tried to be supportive. This is one of the times where the understanding and loving attitudes of my friends and family cannot be praised enough. I shut down when I’m stressed. I close myself off, and can be quite cold. My loved ones didn’t flinch. They left voice mails, text messages and Facebook posts filled with love and support whether I thought I needed them or not. I may have walked into that meeting by myself, but I knew I was not alone.

The women I met with were surprisingly kind. I had walked into that meeting prepared to fight for my son, as I had in every other meeting, and this was not the case this time. These women seemed to really care about Xander being as successful as possible during the school year, and cared very little for the budget aspect. Xander’s teacher was very realistic with her goals for him, as well as strengths and weaknesses. She shared her observations, and what she had implemented into his class time to help with his special needs. The case manager, who is usually the tricky one to deal with, was warm. Despite their kindness, an IEP is the ultimate game of chicken. What a parent wants, and what an educator wants rarely match up completely. You have to really pick and choose what items you battle for. I knew Xander’s speech had progressed to the point that he no longer needed speech therapy, yet I still asked for speech services, knowing that I could negotiate away speech in order to keep something else that was much more important like keeping his para educator. It may seem like an awful tactic, but if it gets my kiddo the services he needs to be successful, I’ll do it.

I’d love to say that the experience with the new district was perfect, and I walked out of that meeting with every service Xander truly needed. That wasn’t the case. He won’t be receiving speech, as he no longer qualifies (YESSSS!!). We asked for a re-assessment of OT needs based on his classroom setting, and they agreed. His need for para support will be assessed by a district behaviorist, rather than our ABA consultant, however, the district behaviorist will consult with our ABA consultant before completing her assessment. Despite the back and forth, the overall feeling in the room was comfortable. The district was receptive to my points, just as I was to theirs. There was a sense of unity; we all wanted Xander to have the best chance at being successful this year. It is amazing to feel that we are all working for and towards the same goal, and that’s all I can really ask for.


Adaptation

As we close in on the end of our third week of Kindergarten, Xander seems to be working into a routine. We are commuting 45 minutes each way in order for him to be in a school district that provides appropriate services. The last three weeks have been intense and were a strong reminder of how capable human beings are to adapt to their conditions.

The first day of school is always tough. Possibly more so for us parents, than for our children. We smile outwardly and cringe inwardly as the door closes behind them. It is an excruciating three and a half hours, wondering what horrors (because there’s no way they can be surviving without us!) our children are experiencing. What if… questions are non stop. Day one pick up you can feel the tension as we wait to scoop up our babies. The general sense of relief when they come out smiling is overwhelming. These were typically developing, normal children. Their parents were just as stressed as I was. It was nice to feel “normal” for a change.

Week one, at home, was difficult for Xander. I watched his SIBS (self injurious behavior) soar. He was hitting himself, and throwing himself into walls. He pushed his afternoon therapists away from him. He has never been so verbally mean. Telling me he hated me, that he wanted to die. It breaks your heart. This is the hard part, not just for me, but for him. He has to get these emotions that he doesn’t understand out of his body. Anger is the easiest emotion to understand, so this is how it comes out. I have, and always will be, his safe person. He knows that he’s supposed to use ‘nice words’, but he also knows I’m 100% safe. That I will take the hitting and kicking, and still fall to the floor and wrap him in a tight bear hug with my arms and legs to help calm him down.  There were late night tears, and hopes of the next day being better.

It didn’t feel like it, but week two was better. Xander’s SIBS decreased, as did the angry outbursts. The interesting shift here, was the increase of physical affection. Xander struggles, as most ASD kiddos do, with physical touch. The mommy side of me jumped up and down at this new development. The behaviorist in me knew this wasn’t normal physical affection. Xander was pushing his whole body against mine, and pulling both my arms across his body. Nuzzling his head into my biceps. He was hugging for affection. He was hugging for pressure. For sensory input that was helping him cope with the over stimulation of having 24 kids, and no quiet time for three and a half hours. The behaviorist lost this tug of war, and the mommy chose to relish these moments.

As we close out week three, I’ve seen another shift. The SIBS still hanging around, but at a much more infrequent rate. Xander is still seeking borderline excessive amounts of pressure sensory input. He’s calm (well, calmer). He’s adapting.

It’s important to point out that where all of these struggles, and heartache has been happening at home, the only behaviors the school and his para educator has witnessed is mild difficulty with transitions. As we gear up for his IEP on Friday, we are presented with an ever too common struggle. Splinter skills, and fighting for the services needed based on Xander as a whole child. That, my friends, is another whole post 🙂


A New Understanding (Hopefully)

     It seems that there has been an increase in the curiosity surrounding Xander’s special needs lately. Friends, family members, even strangers seem to be asking more questions. They range from questions about his health, his daily life, his tantrums, as well as how I deal with all of it, especially because of my age. Being a parent of a typically developing kid is hard, regardless of how old you are. Throwing autism into that mix is like scattering the path of parenthood with hidden land mines.  I had Xander when I was 20, and the week of my 23rd birthday, he was diagnosed with autism. Our life is not easy, but I am very well aware that it could be worse. At times, I feel closer to complete strangers who have autistic children then a lot of others in my life. There are things I can say to them without judgement, and with understanding. The sudden influx of questions had me thinking, if there were key points that I could relay to people about Xander’s and our life, what would they be? Would it help those closest to me to understand our life? That is what today is about.
      I’m surviving, and it’s a hourly struggle. When people find out I stay at home their response is usually, “Oh! You’re so lucky!” I don’t stay home because I want to, I stay home because I have to. It is a 24 hour a day job to manage the many different types of doctor appointments, the full time ABA therapy, the meetings with state agencies and school districts. I have days where I don’t sit down, and food is forgotten. When I say I’m tired, it’s not the kind of tired that will be fixed from a good nights rest. It’s deep down, in my bones. I’m grateful for the help that I get from family and friends. Even if it’s as simple as coming to the house for a play date, or sending a book on autism with a special note. I may not say it, but I am so thankful, and “the little things” do not go unnoticed.
     I mourn the loss of Xander’s childhood. Greiving is a normal part of the process to acceptance. The grief cycle is something usually only attributed to death, however, you go through the same cycle when your child is diagnosed with a developmental disability. While most 3 year olds were running around playing outside, Xander was cooped up in a room in intensive ABA therapy trying to learn how to speak and function on a developmental equivilent to his peers. We tried the buddy bunches, mommy and me gym and music classes. It caused physical pain to see my child struggle, to not be able to handle sitting so closely to other people, to cringe and scream at the echos in the gym. Having a second child was reiteration to how much he has missed.
     I celebrate every acheivement, no matter how “small.” The first time Xander waved independently, I jumped up and down, picked him up and spun him in circles. The first time he said “mom,” I cried. When he holds eye contact, I do an internal happy dance. There is an overabundance of high fives, good jobs, and rewards in my house. It may look like he’s spoiled or we’re over the top, however if you knew the amount of hours put in, the struggles for him to be able to get to that point, you’d celebrate too.
     It’s hard to hear about “normal” kids. My friends have started to have children and it is a joy to have other mothers around. However, it is hard to watch my friends gush over their chunky monkey cutie’s when my 5 year old doesn’t posess that same skill that makes them so happy. I’m jealous. I wish that there weren’t things a 2 1/2 year old could do that my 5 year old can’t. It doesn’t change my delight that these friends are excited, because I’m happy for them, too, but it stings. This is not limited to my friends’ children. Having a typically developing second child is difficult at times. It’s both a celebration and heartbreak when he does something that Xander did not, or still does not do. It’s a difficult balance, as it is not Gavin’s fault his brother is autistic. I still, and probably always will, struggle in this area.
     It doesn’t matter how tough my skin is, when you say something mean about my child, it hurts. Wether it’s about his public meltdown or my parenting or how he’s still in diapers, your words hurt. I may hold it in, and act tough but it’s likely to plague my brain forever. I still remember the first time someone inserted their opinion about a public meltdown in Target. I remeber what the woman looked like, what clothes she was wearing, and her exact words. Regardless of other people’s ignorance to the situation, I take it personally.
     I share a level of understanding and an unspoken bond with other autistic parents that only we understand. We celebrate loudly, and suffer quietly. We share little tidbits of our journey with each other. I look forward to Xander’s weekly social group, as it gives me time with these parents who understand our life. Some of their children are above Xander’s level, and some of them below. It doesn’t matter where our children land on the spectrum. There is a sense of comfort sitting in that room chatting about doctors, speech struggles and finding balance in our lives. I, at times, feel more connected and close with them than my dearest friends.
     I will never feel as though I am doing enough. This is something that every mother I have talked to with a child on the spectrum agrees upon. There is never enough time. There is research, and new treatment ideas, and new educational services, changes to insurance. I joke that I have my PhD from the University of Google. It’s because every time I hear of any new research release, medication, therapy practice, I have to research every aspect to see if it applies to my son, in any way.
     I understand how lucky I am. My journey through autism is different than most. I was lucky to work in the field before he was diagnosed. The irony of this is not lost on me. My company and co workers were and are entirely amazing and I consider them family. Xander started Early Intevention a month before his 3rd birthday. It is because of all of our hard work, our blood, sweat, and tears, that Xander is the child he is today. That he speaks. That he calls me mom. That he will tell you “no.” It’s a spectrum, and there are children above and below him in the severity of this disorder.
     I love my family, and friends. I hope this gives them insight and understanding that I have maybe not shared in the past. I hope it makes me stay open towards them, and more accepting of their support, however they choose to give it. Most importantly, dear friends, keep asking questions. Wether it is about Xander, or autism in general, keep asking.