I would say that that is a fairly accurate description of my emotions for the last few weeks. I have moments of depression and moments of great gratitude and joy. Sometimes, somehow, I feel both at the same time. I think when something life changing happens, like a birth, death marriage, or major diagnosis of a loved one a person's feelings can be so complicated it is impossible to pinpoint or even understand what you are feeling. I think I have been trying to sort out all those feelings. Every time I sat down to write a post on my blog I didn't even know where to begin so I would just close my laptop and walk away.
As expected, I have had moments where I feel depressed about Ethan's diagnosis. I have read a lot of accounts and experiences of parents of children with Aspergers or other disorders on the autistic spectrum and most of them describe being extremely depressed. They actually go through mourning for the child that could have been. In fact depression is much higher among mothers of a child with an ASD than mothers of typical children. My response to this has been Duh, of course they are, being a mother of such a child is extremely challenging. Much more so than a typical child.
I don't think it is the actual diagnosis that depresses me. When I first got word from his pediatrician I felt that a huge weight had been lifted off of my shoulders. After I got the diagnosis from the pediatrician I started to do a lot of research. I think I just became overwhelmed with information. Autism is so mysterious. I found it almost impossible to answer the questions I had. Either the information was written in complicated medical jargon, or information was completely contradictory. Many issues surrounding Autism and related disorders are so emotionally charged. I feel like we have been thrust into that world. The more I read the more depressed I got. I also felt immensely unqualified to be a mother to a child who needed so much and still try to mother two other precious children and deal with everything that comes along with living the college student lifestyle. Also, being confronted with all the struggles Ethan would face, like being bullied, not having many friends, having difficulty someday finding a spouse. Knowing some of the things Ethan might be up against seemed almost too difficult to bare. Learning about treatment has been completely mind-boggling. It is recommended that a child with an ASD have 25 to 40 hours a WEEK of treatment. That is a full time job!!! Luckily Ethan would get much of that at school but still that is a lot of time spent just on therapy. And, of course, the constant worry that has taken up permanent residence in every thought and seems to be a constant backdrop to everything I do. Also, this is something I was not prepared for, but, it is a very lonely feeling. Knowing what your child faces and trying to navigate your way through all this new information. Not knowing where to go or what to do. As strange as it may sound though, sometimes my biggest fear is that we will finally meet with a neurologist and he or he will say it is not an ASD and we would have to start from square one again. Not knowing is so much worse.
I don't think I have been nearly as depressed as other parents when their child is first diagnosed. First of all, I've known for a long time that Ethan was different and decided a long time ago that whatever the diagnosis I would accept it and deal with it and use it as a tool to help Ethan rather than let it drag me down. Either way, Ethan's got it whether I like it or not and an accurate diagnosis will only help. Second, I know he could be a lot worse. I know some autistic kids never talk and sit and stare all day long. I know that Ethan is high functioning and smart and there is a high chance that he will do everything that he desires. It may be a lot tougher but he can still do it. Third, Ethan is making progress. He is drawing stick figures for the first time. This is a great improvement because he has extremely poor fine motor skills. He made a friend at school. This is huge for him. He has never really had a friend aside form his sister's. He's had other kids come over and had play dates but it seems like it was usually parallel play. Ethan had a hard time communicating with other kids and other kids just didn't know what to make of him. Ethan and Eric actually talk to each other and play with each other. Eric always says that Ethan is his best friend. Fourth, I know, thanks to the gospel, that this is temporary. Temporary when you have an eternal perspective. Yes, Ethan will probably have to face a lot of challenges for the rest of his life, but really, our time here is so short. Heavenly father had a great purpose in this and there are valuable life lessons that Ethan is going to learn and teach others. I have a lot of hope and know that the Lord has great things in store for our family.
By the way, We finally got an appointment with a pediatric neurologist on April 22 in Lubbock. We also got him in to see an audiologist. They said that though his hearing is normal, he has problems with the way sound is registered in his brain. Therefore, loud noises, certain noises can be very irritable and a loud environment can make it extremely difficult for him to concentrate.
8 comments:
Your beautifully written words really touched me. You are so articulate in expressing what is in your heart. I mean it literally when I say that our thoughts and prayers are constantly with you and your family. I just wish that there was something more we could do to ease your burden.
The hand of the Lord has always been in your life. He is watching over you now, and will provide the support and the answers you need. Doors will open. We love you!
I just layed in bed and cried next to Jared last night because all of my worries and feelings about Harris' struggles have come to a head as of late. I layed there and listened to him tell me all the truths I already know, but needed so much to hear someone say. I can get so lonely in my worry, but I love knowing that there is this man who feels what I feel about the same little boy. He reminded me of the truths you already know about Ethan.
"He can do alot more than we realize. We need to focus on what he CAN do. I know he progresses a lot slower than the other kids his age but he IS progressing, and at his own pace he will get there. I know he really needs a friend, but he has Ethan and Faith and his cousins and one day that friend will come along."
Nat, I know you need no reminders. You know and live these truths like almost no one I've ever met. Just know that you are NEVER alone. You can call, email, blog and I am always here for you. I'll even just sit on the phone and cry with you, because sometimes tears are the only way to say it. Ethan is destined for great things. You were meant to be his mother. He will prove to be the glue that seals your family together so tightly you will wonder how he could have been so selfless to have agreed to come into this body to get you all where you are going. I love you.
Hey Nat,
I'm sure you've had those times when you've felt like things happen for a reason. Well I think us getting back in touch with each other, after all these years, is definitly something that happened for a reason. Aspergers is something I was not familiar with until I married into the Bergeson family. They have quite a few members of their family who have Aspergers. Some have been officially diagnosed, one of those being one of my nephews who wasn't diagnosed until he was 18. Some, like my father-in-law, spent their whole lives being absolutely brilliant, he is a retired pediatrician. But he would always say and do things in social situations that would send my mother-in-law hiding in shame. He, even when I met him 6 years ago, just seemed different and his kids would cringe whenever he came near. They didn't understand why their dad was so odd. Then Aspergers became a little better known and when his family heard about it, they thought "Oh... that's what is wrong." He fit the bill for Aspergers perfectly. He was never officially diagnosed because by that time he also suffered from dementia so that's what the focus is on. Aspergers is so prevalant in the Bergeson family that their is a running joke that it should be renamed Asbergesons. I've seen my family members struggle and I really feel for you. If there is anything I can do, please let me know. If you just want to talk, email me your number and I will gladly give you call. Ethan and your family are in my prayers.
Love,
Amy
Natalee, You are such a wonderful mother. Ethan is so lucky to have you, and you are so lucky to have him. These times are hard, but Amy is right, it will make your family even closer than ever. I just read a wonderful article by a woman who has Aspergers, she was recently diagnosed at 48 years old. She talks about how it was hard growing up, but now she is an adult, a CNN manager, and has a dear friend who understands her, and a great marriage of 26 years. She has learned how to deal with it. It is a nice article. I have the site below. The end of her article she writes about how her senses are very sensitive.
And then she says, "I could tell you so much more, but instead let me share one last insight. Don't pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for "normalcy."
It will be hard for him sometimes, but also he might be seeing, hearing, feeling, tasting, smelling things so much better than we do. He might be really enjoying the things that God has created so much more fully than those of us who aren't with Asperger's.
http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html
You know that Heavenly Father loves him, and sometimes life is hard, but he will help us and protect us. There is a reason that Ethan has the trials he has.
I remember when Rick H. died, all of his siblings gave a talk at his funeral. They all talked about how it was such a blessing to have him in the family. I really think that if Rick had not been born with the medical problems he had, his family would not have been so spiritual and close to each other.
Maybe this is your family's thing. The thing that your family needs to get you all to the Celestial Kingdom together.
Natalee, the Holy Ghost will guide you and Gary in all the things you should do to help him.
We love you and pray for you nightly.
Lisa
I'm so glad you wrote this, and you wrote it so lovingly and clearly that, although I haven't experienced anything like this, I feel like I have a little glimpse. I wish there were more I could do to help shoulder the weight. What a blessing that Gary is the wonderful husband and father that he is, and that you are so in tune to the Spirit (yes, even the times that you are sure you can't feel it!) I love Ethan. I love his rapture and joy when he likes something, and I love how he says, "I'm happy now!" when he recovers from a personal tragedy, however small. I miss you all, and I love you so much.
Natalee, I think about this a lot. Right now it is really really hard. There will be hard times and good times all along the way. But when Ethan accomplishes something that is hard for him, just think of what a triumph that will be.
I was thinking that once Gary finishes school you should think about moving to where ever the best help for Ethan can be found in the US. If there is a certain doctor or medical center that seems to be the top with what kids like Ethan need, it might be a good idea to move there. Even though we want you here. Maybe part of the plan of Heavenly Father is to get Gary into a really well paying job so you can pay for any extra help that Ethan needs. It is just a thought. Of course I don't know anything.
Also, I was going to tell you (you probably already know) the church has a new disabilities website. There is a page there about Autism and related problems. It has some really good advice. It told a story of a family at a group camp ground. They had a son with Autism or something like that. (I don't remember the details, I read it a month ago). People there thought he was just badly behaved and didn't give the family the support they needed. Then there was a meeting, and the mom told everyone what was wrong with her son, and what he needed. Everyone instantly changed. The women told their families what was wrong and how to act, and everyone was very supportive and helpful, and the family had a wonderful time. The point of the story is that sometimes people just don't know, once they do, they know better how to help and how to act, and what to expect. There is other great advice there. Again, you probably know about it.
Natalee, we love you and your family so much. You will all be blessed by these trials. But sometimes the trial is the blessing, it just doesn't seem like it at the time. When Ossil got Leukemia, it seemed like the a very hard trial. Things got better, but Leukemia always had to be delt with. It was the annoying 6th member of the family, and I hated it. It was like its own individual member of the family that we had to deal with and take care of but I hated doing it. It was separate from Ossil, Then as time went on, I realized I hated our newest member of the family less and less, and that instead of this horrible awful trial, it had turned into a wonderful blessing. We always had love for each other, but it made us really appreciate our blessings, and each other, and focus our priorities better. Now I am very glad for this blessing. Ossil is in total remission, but he will be on medication the rest of his life, and the side effects are there. He gets muscle cramps easily, so it is hard for him to do strenuous exercise. And sometimes he gets tired easily. So it seems like he is older now. But so what. It really is miniscule.
Natalee, I understand the depression and the rollercoaster ride you are on, however for a completely different problem. It is tough. There were days when Ossil got sick, that I felt so sad, scared and helpless, that I thought there was no way I could feel worse, or that I would never feel better again. But I did, and it does. Things may never be the ideal way you had envisioned it for Ethan, but they can still be good, they can be great. I think we have plans for our children, but Heavenly Father has better plans for them, even if we don't understand or like those plans. Sometimes will be hard, and then there will be triumphs. It is hard, but if anyone can handle it, it is you. You are an amazing person. When I finally grow up, I want to be just like you. I love you Natalee!!!!!
Natalee I don't really know what to say more that has already been said here. Just know we love you, and we love Ethan, and that it really all will be OK. You are amazing, you have a wonderful family, and the Lord has great things in store for Ethan and all of you.
Natalee, you are a wonderful mother. I am sure that Ethan was sent to your family for many, many reasons, but these are some of the obvious ones to me: You have a special gift for smiling through adversity. You have amazing cunning with limited resources. Frankly, anyone can buy style--you magically whip up your own on the sewing machine. Your creativity fosters joy and happiness. You are beautifully low maintenance, which means you have more time and attention to offer your children. You see past others' limitations and shortcomings. You are willing to make serious sacrifices for the dreams and well-being of your family.
You know, I have several friends who have children diagnosed somewhere on the autistic spectrum. And they are all amazing mothers. There is no coincidence in this. Ethan has so many things going for him--and you are on the top of that list.
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