Thursday, August 27, 2015

Parenting Children After Autism

My oldest child, Julianna, was diagnosed with autism at almost age 5. During the 2 years that preceded this, there were other diagnoses of developmental delay, hypotonia, and sensory processing disorder that occured right around when our second child, Blake, was born with a rare blood disorder called mastocytosis. His mysterious and frightening symptoms consumed the first two years of his life, and simultaneously I was trying to figure out exactly why Julianna displayed odd behaviors and lacked social abilities. Needless to say, it was a very trying time for me as a mother. Once I knew for sure that Julianna was on the autism spectrum, it meant that I not only needed to seek help for her needs, but also to watch Blake closely for any symptoms he might show at his young age. Could autism happen again? Autism was so new to me at that stage of motherhood, but I feared it happening twice.

So I watched my second child grow and develop normally, but if he ever shook his head, or flapped his arms, or didn't make eye contact, I would wonder. If he ever lined things up, withdrew in social situations, or lost language, I would worry. Every mother of an autism child knows the red flags, the warning signs. The signs that came and you silently wished they would disappear, or you pushed them to the back of your mind, telling yourself that she'll grow out of it, she'll get better, she'll stop.

Turns out, Blake does not have autism or anything else on the spectrum. His mastocytosis symptoms calmed down after age two. He is what autism parents would call "neurotypical." I could move forward, focusing on Julianna's needs, now that Blake's health was improving. So I started fighting for services for our daughter, in school, and through doctors, regional centers, the list goes on. I was learning what autism was all about, and how much it can change the dynamic of a family, the perspective of motherhood. Autism somehow consumes a family; it becomes the center of everything and largely dominates the family's well-being and often, happiness. When she was okay, we were okay. When she had behaviors that were out of control and terrifying, we were the same. It's a constant up and down battle.

Having another child always seemed like the plan, but considering what we had been through, we decided to wait a little longer this time. Which was a good thing, because both my husband and I ended up having some health issues ourselves to work through. Once we got through that and had a chance to breathe, I became pregnant with our third child. And knowing our history, there was only one thing we hoped for: a healthy, normal baby. So we prayed, every single day, also acknowledging that God had a plan for us, and we would be okay either way. But we really tried to have faith that this baby would be fine, born without any challenges. I didn't want to have to look for those red flags or warning signs. I just wanted to enjoy being a mother to my child, watching him grow and develop.

On the day of Nathan's birth, we discovered he was born with a birth defect called bilateral cleft palate. Suddenly our new baby needed an entire team of doctors right away, and we spent an entire night with them trying to discover a way to feed him, which we did. We were told he would need surgery to repair it, and that he might have speech issues as a result. We really had no idea what his future held. But I got through those early months, learning to feed him with a special bottle, and pumping as long as I could. I remember being so worried that he didn't smile until he was 6 weeks old. I was literally counting the weeks, knowing that smiling late could be a sign of autism. I felt like I always had to be on the look out for things like this.

A few weeks before his palate repair surgery and ear tube placement, we got a call from the geneticist. Nathan had a duplication of chromosome 22, which meant that he could possibly have any number of developmental delays, growth issues, even things on the autism spectrum--the list was endless. So we were told to monitor his development carefully, and that he would be seen regularly by a developmental pediatrician.

Now suddenly, I found myself in the same position again: I now had to watch for those red flags because of this new information. I had to look for the arm flapping or head shaking, the lack of eye contact or smiling, the arching back, the dislike of human touch. Truth is, I would have regardless, because once you have a child with autism, you can't help it. You even subconciously look for it in other people's children.

When he was around 1 year old, he began saying words, and I was so relieved. He wasn't showing any signs of autism. I felt like I could let my guard down a little. But then a few months later, he began to lose some of his words, and even shake his head. I immediately called the early start program, and after an evaluation, he did show some slight delays and began receiving services.

Just as I was starting to cope with the idea that I was now heading down the same path with my youngest child, I took him into a follow-up appointment at the Ear Nose Throat doctor, and she discovered that both of his ear tubes had fallen out. She explained that his loss of language was because he was not hearing properly and that he needed new tubes right away to keep him from losing speech. Two weeks later, the new tubes were placed. I learned that autism is not the only thing that can cause a loss of language.

It's been over a year since that time of worry and confusion. Nathan is a thriving two-year-old, seeing a speech therapist for articulation, but ahead of the game in cognition. He is smart and funny, social and curious. I have absolutely no worries about him at all, other than possible future surgeries. The chromosome duplication, as far as we know, only caused the cleft palate, and nothing more. However, when he does things like lining up waterbottles, I have to wonder, is there just autism in the air at our house?

When your oldest child has autism, it changes the way you parent your younger children. You have to be hypervigilant, watching every move your children make, analyzing every odd behavior. It's always on your mind. Now that my youngest is almost 3, I feel like I can finally move on from that super-observant stage and breathe a huge sigh of relief. We made it! We've had some challenging health issues with our children, and my oldest will still bring us challenges, but we've learned so much from each of them, and have turned a corner as a family. Now time to put away those waterbottles...

Wednesday, August 19, 2015

A Time for Healing

With each of my children, I have had intense periods of stress and worry involving their medical challenges. My oldest will continue to have difficulties, though she is progressing in small ways all the time. My middle child was born with a rare blood disorder that literally kept me living in a panicked state for over two years, worrying about him possibly going into shock, taking him to a specialist on a regular basis. And then when my youngest came along, and we had prayed to have a child that would be "easy" or "normal," and he was born with a birth defect that needed surgery and possible speech therapy, it opened up a whole new box of worries and challenges to our family, mostly me. I honestly look back on the almost 12 years of being a mom and think, how did I hold it all together?

Well, I never did keep it together, and I still don't. I am plagued with not only worry, but also a lot of guilt over the way I simply cannot handle the pressure of raising my children. There are days it becomes almost unbearable, and I want to just run away, leaving all my worries behind. The stress and worry that has piled up all these years never had a chance to resolve itself completely. I sought out therapy here and there over the years, but it was never enough. About a year ago I saw a doctor because I thought I might have depression, and after briefly telling him my journey as a mother, he without hesistation wrote me a prescription and said it was mostly due to very high stress. I never took the medication, but it has weighed on my mind. And recently, I've read articles about how being a parent of a special needs child can cause PTSD symptoms. This motherhood thing is way harder than I ever imagined it would be, and with my youngest, more and more doctor visits piled up, and then therapy, in addition to everything else I was trying to do for my oldest. I started to feel like there was no end in sight.

But then something happened this summer, which was no doubt a blessing from heaven. I applied for a grant at Nathan's, my youngest's, early start school, which is also a daycare and preschool. I did it to make sure he would have a spot at the school just in case he was kicked out of early start (he had caught up and surpassed all his goals by this point.) And I got the letter back, saying if I wanted to, he could attend school there from 8-5, Monday through Friday, for FREE.

This was completely unexpected, and of course at first, I told the school, no, I don't need that much childcare. I can take care of him at home after his early start class. They told me I didn't have to use all the hours, but could personalize it to whatever I wanted. Well, this got me thinking, for the first time ever, about childcare/preschool that was longer than the typical 3 hours/2 days a week. The more I thought about it, the more I felt guilty about even considering it. I'm a stay at home mom! Why would I even use something like that! I'm here with him; I don't need more help.

And then it hit me, really strongly, that this grant was given to me to help me in a way I didn't even know I needed. I have spent over a decade worrying and stressing over the demanding needs of my children, to the point where I very nearly had a breakdown. Maybe I even had one, I don't know. So why should I feel guilty accepting this offer? Don't I deserve this, after everything I've been through? He will be in a safe, wonderful place where he will learn from his teachers and other children, the same place my oldest attended when she was young. I love this school, and the only reason I can think that they qualified him for this grant is because they know my history, they know what I've been through, and they wanted to help. How could I possibly turn this down?

So I decided to extend his three days of school to 3 pm instead of 11:30. And now that school is back for my older kids, I have three school days a week, to myself, to do whatever needs to be done, whatever I want to do. And I can already feel that this time for me is exactly what I needed. I need to heal right now. Healing. I've written recently about how I feel broken and worn down and exhausted, and I know that's how many moms feel. But unless you are a special needs parent, it's impossible to understand how I really feel. The emotional toll is so great that it begins to affect you physically, even. So right now, and for the next few years until Nathan starts kindergarten, I will be healing on those three days a week.

Part of my healing also includes taking a creative writing class at our local community college. It includes exercise. It includes cleaning my house without interruption, like really cleaning it well. It includes watching shows and reading books. It includes doing service for others. And most of all, it includes writing and blogging, to the point of being in tears, just like this post did for me.

I am going to try really hard not to feel guilty or selfish for taking this time for myself. That is hard to do because being a mother is all about being selfless, about sacrificing everything. I am going to keep remembering that, right now, I need to heal in order to be whole again.

Thursday, August 6, 2015

7 Reasons Patience is Essential to Raising Special Needs Children

Perhaps the first attribute I discovered that I lacked after become a mother was patience. Raising a special needs child means waiting, a long time, to see any progress. And at the same time, it means learning to control your anger or frustration, trusting that things will get better. Though I am still learning how to be patient, I wanted to share some ways that I have begun developing this crucial characteristic:

1) Realize that progress will not happen overnight.

Over the years, I have delved into many different therapies for my daughter on the autism spectrum. Vision therapy was one that intrigued me about 5 years ago, and though it was costly, and very time intensive, I went for it anyway. I would take her out there, the doctor would show us what we needed to do, and send us home with a packet full of stuff to work on before the next week. So we'd try, really hard, to incorporate this therapy into the others she was doing, and after a few months of not really seeing any progress, and feeling defeated by my inability to be dedicated to this home program, we quit. I never saw the progress that could have resulted because in addition to giving up, I also had the attitude of, "This isn't going to do anything for her. Why am I wasting my time?" I never gave it enough time to show results. I wanted the progress to be quicker, and I wasn't willing to put in the time to see it. So I threw in the towel.

Raising special needs children is a process, a commitment. You will not see amazing things happen right away. It's not like curing your child of a common illness where you know the end will come. For special children, the end is indefinite, undetermined. And because of this, you will feel weighed down by lots of behaviors and overwhelmed by lots of therapy appointments. Just do the ones you think will help your child (and you will know, I promise), and be dedicated to them, for the long haul. You will be able to look back on the many years of speech or occupational or physical therapy and see what a difference it has made. If you give up, you will never know how far they could have gone. Be patient, keep going, and don't throw in the towel.

2) It takes daily practice and dedication.

So building on the first step, realize that patience is key when it comes to the daily things. The skills that might come easy to typical children don't to special needs children. I still remember when my daughter was a toddler, and I wasn't sure what her disability was, and was even denying she had one. We had a little playgroup at the park once a week, and I would see kids her age climbing the ladder and going down the slide, with smiles on their faces. My daughter wanted nothing to do with those things, and was even fearful of going on the playground. So near our house there was a little park, and I would take her there every day and teach her how to climb the ladder. She physically could not make her legs and arms work to do this, though typical children learn on their own. I would put one hand on her leg, another on her arm, and guide her from step to step. This took months of practice, but it paid off, and she learned what many would consider a very basic skill. But to me, it was even more rewarding knowing our daily practice was successful.

Special needs children need repetitive, daily practice to learn skills. The way I see it, their brains are wired differently, and it's our job as parents to help them connect the little wires to the right places. And this will only happen through constant, monotonous, continuous practice. It can feel draining thinking about how far they still have to go at times, but again, keep going. Each practice session to learn a skill is like a new step on the ladder for their development, and eventually they will get to the top of that ladder, with you by their side.

3) Don't compare your child to others.

This is very easy to do, even now that my daughter is almost 12. One skill that we've been working on for years now is swimming. She is still deathly afraid of swimming in a deep pool, and because swimming isn't typically something you can practice all year, she loses the progress she makes each summer and it feels like we are starting over. We felt this again as we started swim lessons a few weeks ago. And I have to admit, looking out at all the kids swimming independently in their group classes, and then seeing my daughter with her private teacher, still struggling to just put her face in the water, was a little disheartening. But I tried to focus on the progress she made during those two weeks and not even care what others were doing. After all, she's only going to go as far as she is comfortable doing--I can't force progress--it's going to happen naturally. And for her, she did hard things. But if I were to compare her to the other, much younger children, I would always feel defeated.

As parents, we want to be proud of our children. We want to celebrate the milestones and achievements they make. But with a special needs child, most of those milestones either don't exist or come much later. This can rob parents of the joy and pride they feel in raising children. But if we watch patiently, and carefully, we will be able to see the progress of our child, just our child. And really, that's all that matters. You will never be a happy parent if you are comparing your special needs child to other children, or even other special needs children, for that matter. Each child is born with a unique potential, and as parents, all we have to worry about is helping them get there.

4) It means you will have to make lots of sacrifices.

If I were to add up the many hours I've spent on the phone advocating for my daughter, or writing emails or letters for IEP meetings, or driving her to different therapies, the number would be staggering. Just when I thought we'd gotten through one tough hurdle, whether it be for school or a medical issue, and we could finally take a breath, another one would pop up. And this pattern has continued and always will, because my daughter will always have needs, and I can't give up on being a parent. She is depending on me to help her achieve, and I am helping her become as independent as she can be. I have never regretted the many countless hours I've spent on her behalf, because she is worth it. Now this doesn't mean I don't make time for myself, because that is important. And if I don't get it, I will most definitely lose my patience more during the stressful times. But it means that if there's a problem, I am willing to sacrifice whatever time, hobbies, interests, or pursuits in order to solve it. Nothing is more important than that.

No one really likes the word sacrifice, but being a parent is all about it. And because special needs children need lots of extra help, parents will have to sacrifice their time and interests in raising them. Ezra Taft Benson said, "We love what we sacrifice for, and we sacrifice for what we love." We love our children, regardless of their challenges. We are willing to do anything to help reach their goals and succeed as much as possible. It all comes from love--we do it without second-guessing because we love our children.

5) Others will notice the progress in your child more than you. Believe them.

My youngest child was born with an isolated cleft palate. Even though he was born at a healthy 8lb 15oz, his inability to feed like a normal baby caused his weight and height percentiles to slowly taper down to just 1% right before his surgery. He was a tiny thing. But after the surgery, he quickly gained the weight back, and then began talking right after age 1, and then began losing speech because his ear tubes fell out. He then fell a little bit behind and started speech therapy and early intervention classes to help catch up. And during this time of ups and downs, I wasn't really noticing his progress because I was so worn out by chasing him around and basically keeping him alive. But others noticed his speech improving, and his weight climbing steadily, and would comment on this to me.

I find it interesting when we see family members that we haven't seen in a while and they remark that our children look so grown up. Of course I then look at my children and think, hmm, maybe they're right, but I don't see it! The same is true when measuring progress in special needs children. Family members will notice improvements after a long period of time, and your first reaction will be to disagree. But don't do that. Just believe them. You can't see it because in the thick of all the appointments, IEPs, tantrums, giving baths, brushing teeth, getting them dressed, it is easy to be blind to the progress your child is making. Many times, the stress of parenting overshadows the little milestones your child is reaching. But in those good moments, where you feel like you can do this parenting special children thing, you will notice, and you will feel rewarded.

6) It means you can't quit--this is your job.

If you give up on the daily practice, the skills will be lost, and you will be starting over again. One skill that my daughter just mastered is showering. On and off over the years, we have worked on it together. We would make some progress, but then I would grow tired of doing it, impatient, and stop for a while. Each time we went back to it, it was like we were starting over, trying to connect those little wires in her brain again. But earlier this year, I became determined to conquer this skill, so we went at it hard, and she was successful. But we had help--it wasn't just me.

I've never worked full-time outside the home. Mothering has been my job from day one. And each of my three children have been born with unique challenges that have tested me and will continue to test me, that have exposed to me my weaknesses, that have brought me to my knees. There have been days where I wished that I could just walk out that door, that I could change my circumstances. But I can't. This is the job I have been given as a mom, and these kids are depending on me. But it doesn't mean I have to do it alone. In addition to my husband, I have found so many resources. In-home services that provide therapy, respite workers that watch my children, friends that I can lean on for support, teachers that have done everything to help my children, aides that have been life-changing. Without them, I just might have walked out that door, long ago. If you feel like you are headed that way, ask around for help. And be patient, you can do this. Being a parent isn't just a full-time job, it's a lifetime job, and you have the right skills for the job.

7) It will either make you a better person, or a bitter person.

When you find out your child has a diagnosis or disability, there are two paths you can take: the better path, or the bitter path. You might travel down the better path for a while, feeling confident in your abilities, and suddenly find yourself feeling overwhelmed by it all, and start trudging down the bitter path. I have been down both, and found that the bitter path is much harder to get off of. Once you are trapped in bitterness, it's hard to go back to that "better" person. I know that raising special children is always challenging, but challenges really are to help us discover how strong we are. Staying on the better path seems easy in the beginning, but as the years go by, you start to feel bitter, because you feel like maybe all this work and effort isn't worth it. What it comes down to is your patience is gone, your ability to endure. And so you have to dig deep, to find that strength again, so you can keep going.

I have a picture of our family when my daughter was only 19 months old, and I keep it on my bathroom mirror so I can look at it every day. At this age, she looked so cute and innocent. Someone had told me she thought my daughter had autism, and I had just begun exploring the idea, though at the same time I was trying to push it out of my mind. Because I didn't really know yet, and because I had no idea what the future held for our family, I was much more positive. Now, 10 years later, I look at that picture and think, this is where it all started. This is where I started on my better path, and strayed to the bitter path over time. I think I am wavering between both, but really striving to stay on the better one. It is possible to stay there, as long as we are patient and positive. Raising special needs children has been an adventure, a blessing in disguise. And I will keep moving along, patiently, because of the love I feel for my children, and the love they have for me.