Some Problems We Face
I could in all honesty make this post pretty long. As with any challenge in life we face many obstacles dealing with it. Some small, others big. This is a "generalized" outline. Just as I have said before every child with autism is different and the same goes for every family unit involved.
Insurance ProblemsIf you are one of the lucky ones who live in Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Oregon, Pennsylvania, Rhode Island, South Carolina, Texas, Vermont, Virginia, West Virginia, and Wisconsin your insurance more than likely covers some if not most treatment options. If you live in Washington like me you are facing the fact that most insurance companies here do not and are not required to cover any percentage or treatment. And again if you are like me and have a two parent home with two small yet modest incomes you can forget getting any help from the state. To be fair we don't have it the worst. These states do not have specific insurance coverage mandates for autism spectrum disorder and either do not have a mental health parity law or that the mental health parity law does not include autism spectrum disorder as a covered mental illness:South Dakota and Wyoming.This more than likely could mean that there is actually not any option for these parents unless they can receive state benefits. It's downright scary. While I am not one who tends to accept this notion that there is an "epidemic" of autism,it should be recognized as a major enough condition to be allowed the same benefits as say bipolar disorder or major depression. We have a whole generation of children coming up who have been properly diagnosed or better yet they are getting diagnosed younger and younger so this should be enough to warrant a chance for these children(I am not ignoring the fact that there are many adults with autism who are experiencing this as well).
Know It All DoctorsIf you again are like me you may have brought your concerns to your child's pediatrician and been brushed off. Too many general practice doctors and the like are not trained enough to recognize these signs. Maybe I'm being tough on them but I figure if you have an M.D. and can deliver a baby shouldn't you be trained to see symptoms or signs or better yet trust a mothers instinct? I still can't help but feel that when my son was 18 months old and we were sure that something was going on we should have gotten a proper referral. That would have made Colton's wait time so much shorter. That leads me to my next topic.
Waiting ListsNothing is more frustrating than finally getting a referral or getting a diagnosis and seeking out treatment to be hit with huge wait list times. I've heard everything from 6 months to 2 years! When you read up on autism and the very positive and almost crucial effects that early intervention can have this is almost devastating. I'm really not sure how much I can give advice to these practices on shortening waiting periods but I do know that this is a huge obstacle to deal with!
Your Marriage Or Single Parent LifeThis one is pretty obvious. Statistically 80% of marriages between parents of an autistic child end in divorce. When you are dealing with a child who is like mine and requires almost constant attention this can cause your other relationships to go by the sideline. That being said I cannot even begin to imagine what the single parents out there are dealing with. I cannot imagine tackling this all on my own. These parents must be some really strong people and I have the upmost respect for them.
Your Social LifeI suppose this can also include extended family life. Imagine all your friends or family getting together to spend some quality time or even have playdates. This is an almost impossible thing for myself personally to enjoy. Now imagine that you have a child who refuses to let you "visit" with others or even let you sit still for two minutes. Also imagine that your child is afraid of just about everything in the surrounding and even the people present. Imagine that they are either whining,yelling,humming,or crying pretty frequently. Yeah doesn't usually make people want to invite you to things. Also doesn't make you want to try to go through the battle of even attempting to. Imagine feeling like you feel that you need to warn people about your child and how things may be. None of that sounds very fun does it?
The "Comparison" GameNow I do not like admitting it but I know I can't be alone in this thought but I am guilty of comparing my child to other children his age..often. It can be painful to watch other children tell their parents "I love you" or even simpler "I want that". I hate every time I hear a parent tell someone else "I wish they would be quiet for two minutes". Hey I just wish my son could ask for milk, I wish my son would ask me "Why" over and over again. They always tell us not to play this "comparison" game but I think every parent not just parents of autistic children are guilty of this. It's hard to watch my son be unable to "scoop" buckwheat with a small bowl at co-op preschool or join in on "imitation songs" during circle time while I watch every other child there do them. I try my hardest not to do this especially since I have recently begun to feel like my son has started to realize he is different and seems to feel more detached from the world.
Lack Of AffectionThis may be true for some and not for others. For me it is pretty true which of course hurts. I remember nursing my son when he was little and trying to catch his eyes or stroke his skin. He absolutely hated it. When he had colic I tried warm "skin to skin" baths or "baby massage",again he couldn't stand it. Many times when I ask for hugs or kisses I'm either rejected or I get his back turned when he does get close. When my son gets a "boo boo" he refuses to even let me "kiss and make it better". How does one fight their motherly intuitions? I'm pretty sure it's impossible. We all know our children love us,it's just in their own way.Not the way I was hoping but it won't stop me from trying. I can only hope that those rare moments it seems like he may be trying to show affection will become more frequent in time but either way I love him and I know he loves me.
Feeling A Lack Of "Support"Before I begin this paragraph I would like to mention that I have been blessed to have some great people in my life who are very supportive. That being said I think those of you out there like me know that it isn't really quite as much or even the way we would like it to be. When first telling some people about our son we were met with a lot of "rationalization" or "well all kids do this or that" or the dreaded "well we all must be because that's "typical". I try to see it from these persons' points of view,most people do not want to be negative or even "realistic". The fact of the matter is that we as parents know our children best. We spend the largest amounts of time with them. I think this particular issue only really bothers me because as a parent I feel like I'm being made to feel that I don't know my own child. That I'm not experienced enough. That I am over-reacting. Obviously none of those things make me feel that great,or supported. Yes everyone is certainly entitled to their own opinion but I'm under the belief that when it comes to parenting no one knows anything more than the next because all of our children are so different,autistic or not. I also believe that sometimes opinions shouldn't be spewed out if it's a touchy subject unless of course they have been asked for. It can totally leave one feeling a lack of support.
Another unfortunate way is to "distance" yourself away from the "problem". It kind of hurts when you tell close ones that you're going through a struggle and they don't seem to make much of an attempt to check in and see how you and your child are doing or to offer help.Or better yet to not even try and educate themselves about autism and the spectrum. Yes that may sound "self-righteous" or that I expect people to just drop their lives to help mine. I want to make it clear that yes while it would be nice for me it's really more for my son that I'm desiring it. I want my son to feel like he can take on the world because he's got this big blanket of love and support around him. People who are trying to "understand" him or just simply enough be involved with him. I mean isn't that what every parent wants? I enjoy hearing about these villages that really do come together to raise children. It's too bad we can't adopt that way of life here. I'm under the belief that we should be a world for children, to take the best care we can of the next generation aka the generation who will potentially take care of us. The generation who will raise our grandchildren,become our doctors etc. It's a lot of work to become a part of Coltons "world" but I have to tell you once you are invited in it is such a wonderful place. I enjoy learning from my son and trying to see things his way. I guess I just wish more people wanted to and perhaps in time they will.
Emotions And ExhaustionI figure I would save the most obvious for last. Raising children in general can be tiring and full of emotions. Being the parent of a special needs child is like taking that first notion and multiplying it by oh say one hundred times! Ah the exhaustion:there are so many great things about my son so please don't take this as "complaining" or that I take my son for granted. Again the reason behind this post is just to share some of the struggles. For me personally my day includes lots of fun with my son and joy but that being said I'm have to estimate that more than sixty percent of our day includes whining,tantruming,crying,biting/hitting/kicking and of course the moments where Colton completely "shuts down". Whew just thinking about all that makes me exhausted. Yes a lot of those are common among this age range,the frequency however, are not. It's almost like an evolved version of infant colic but now it's (for me anyway) a 30 pound boy who can now express himself "physically".
The other part:emotions. While I kind of previously outlined some such as: devastation by lack of insurance,extreme concern over waiting lists, and the pained feeling of the lack of affection there are also some other that should be noted.
The depression: from the first time you heard the diagnosis to the realization that your child may not be doing or even be able to ever do all of the things you were imagining. The feeling of loneliness or isolation. The hurt that you feel for your child. None of these things are easy.
The anxiety: Will he ever get married? Will he have kids? Will they be autistic? Will he go to a normal school? Will he go to school on time or be held back? Tie his own shoelaces? Talk? Yes these are just some of the questions you may worry over and while of course there is no sense in worrying so early on, it doesn't mean that we won't do it. Heck, I'm a natural "worrywart"!
The fear: How will we pay for this? How will other people accept our son? Will they accept him? Will they accept the autism (or even autism diagnosis)? How will they treat him or us? All parents worry about things like their children being accepted or respected. For me personally I worry about how much more this may make my son a target for bullying,abuse and feelings of major depression.