I belong to a yahoo group for families living with Autism. Instead of writing things out all over again, I will include my post that I put on there.
"I don't usually post many things but I need to talk to someone who understands where I am coming from. I have 4 children and my 9 year old son is Autistic. My youngest is a little girl, who is 8 months old. Now I am sure that any of you who have more than one child can relate with me when I tell you my story. I am sure that most of you received that email regarding the study done by the University of Washington about rapid head growth from ages 6-9 months. Well, at my daughters 6 month well baby check, her doctor spoke with me concerning her head. She made it very clear that she was not concerned about the size per-say but how fast it was growing. They had me bring her back 6 weeks later to measure again and sure enough it shot up even more. It was that day that I received the email about the study. My heart sank. If any of you are anything like me, then I am sure that from the day you bring that new baby home from the hospital, you are analyzing EVERYTHING they do or do not do. Well I read that study and thought okay, well there is nothing we can do about it right now. Then I started noticing that she isn't even babbling yet. She coo's and smiles and interacts but there is absolutely NO babbling going on at all. She will however, lay there for long periods of time (20 minutes or so) and just growl. She may be playing with a toy or whatever but she just growls repetitively and it is always for a longer period of time and it happens several times a day.
Now I am not so stupid as to not understand that these signs could be "coincidental" however, I am also not so stupid as to ignore them either. Her next appointment isn't until her 9 month check up which isn't until next month. Should I get her in sooner? There is nothing they can do, I know this, but sometimes there is that level of comfort that comes with talking it through with someone other than your equally stressed out spouse. We are also debating on whether or not we should halt all vaccinations. We have never been ones to blame the vaccinations for our sons autism. We have said that yes, they may cause it or they may not. We have always leaned towards the saying "Autism will never take my child's life but measles could." However, if I can in some way prevent my precious little girl from having to face the every day struggles that my son faces than as a mother isn't that my job? To protect her?
As I sit and type this email my heart is torn and tears are streaming down my face out of shear frustration of not knowing what to do or where to turn. I consider myself VERY educated on Autism and I will say that my son is so special to me and I wouldn't change one thing about him as he is the way that God wanted him to be and quite honestly; there is nothing wrong with him. But I do see the every day struggles that he faces. I see him wanting to play with the other kids so badly and yet he just cant. It is agonizing to have to sit back and watch and not be able to help him more. I don't want my daughter to have to face those same obstacles. I am just so torn and desperately need someone to tell me they know how I feel and tell me I am not crazy for feeling the way I do. Who knows. Maybe I am crazy. Any thoughts would be greatly appreciated."
So this is where I am in life right now. I have a tendency to let things brew in my mind for long periods of time and I usually do not let them out. I of course am taking things to the extreme by getting so upset over something that 1) I have no control over and 2) Something that we will not even know for sure for months to come. That is who I am though and regardless, I am having a rough time. It doesn't matter how much I may or may not be over reacting. The point is that this is a huge thing to me personally right now. If any of you would like to check out the link to the study that I refer to, you can view that at:
http://www.sciencedaily.com/releases/2008/01/080130140127.htm
Let me know your thoughts.
11 comments:
I stumbled upon your blog. Please know that I am praying for you and your family. I have not experienced the exact same thing as you, but I do know the fear of waiting for a diagnosis or at least an answer to what is going on. Know that despite what happens, God is sovereign and desires good for you, not bad. Know that he loves you and is watching your little girl. I'm sorry if you intended this blog to be seen by people you know.
HUGs!!!! I know that you have such a difficult road with the children you have been blessed with. Tell your doctor your struggles with the vaccinations. Maybe postpone until she is 2 or older. Maybe you both need a blessing. Peace of mind or maybe reassurance that you are doing everything you can do. They may be excercising caution based on Garrison's diagnosis. You know as well as I do that there is no cut and dry with the autism. nd if she is going to have challenges, your eyes are wide open and you are prepared to tackle anything. You are an outstanding mom and she is blessed to be in a loving home and the family will always be here to cheer her and you on. Tell the doctor everything -- if you want reassurance -- pay the co-payment and go in -- tell them just what you shared with us. You spoke very well and shared your concern clearly, see what answers or suggestions they have. Then have a priesthood blessing, have Natalie blessed -- that will bring you some peace. You will love her for being her. Maybe she isn't babbling because she has nothing to say! Enjoy today. Love her extra today.
I don't know what to say other than my heart is breaking for you! Just worrying about this could drive you insane..I am sorry you are going through this! I pray she is going to be alright and that the doctor is just taking precautions. Let us know what you need us to do to help you!
I am so sorry that you have to go thru this. knowing there is a chance of something like this must be scaring you to death. Just remember that you have people who love you, (a whole ward) a really cool husband, and children that anyone would love to have. The Lord always opens a window when he closes a door so look for something to brighten your day, even if it is just a smile from your little one! Let me know if there is anything we can do! We will have you in our prayers!
You have been on my mind so much after I read this. It is so hard to know what to say... I think the waiting to find out would be torture! But Heather, you are an amazing mom and person and you will rise to whatever challenges you are given, I just know it!
I have tried calling a couple of times but couldn't get you.
TONS LF LOVE!
Let me know if you want anything changed, or feel free to make any changes you want! Love ya!
Love the new look! Don't you love Lora and all her technical skills!
I know that I've already talked to you about this, but I just wanted to let you know that I care. You'll be in our prayers.
Heather, I am so so sorry you are going through this agonizing wait. I wish I'd known sooner and I just want you to know that I care about you and am here for you and I will pray for you little Natalie. It just breaks my heart to read this.
HEather, I know we talked about this on the phone, but I just wanted you to know I was thinking about you still.
We know that there is a plan for everyone who comes to earth. Disappointment is part of that trek. Right now I hear disappointment because moms always want only what will bring happiness to their children. Each of us is different and we make our way differently. We think that because we have found happiness in our way of living, others should want that or need that way too. Our desire when we have daughters is that they marry and have daughters and sons because they bring US such joy. But for Garrison and perhaps Natalie, that isn't their course in this life. They will give and find joy differently from what we expect or want for them. That is what makes them unique and their experiences unique. We don't know what they were like in the pre-existence, but I believe they were the noblest of spirits and they are here to teach those of us who are noble, but haven't reached their level, to gather our strength and find the nobility that each has been endowed with and to be better in serving others than we have been previously.
The Savior has had the same struggle you are and will continue to have. He bled from every pore. We aren't our children's saviors, but we are the Savior's hands and mouth, and feet, and arms, and legs and shoulders, and he tells us we will have the strength needed for all of our trials. He has surrounded us with people who can help lift that burden with their hands, feet,mouth,legs,arms,shoulders. We are never alone in those trials, disappointments, and struggles. So we love one another inspite of the "disasters" around us and look forward to resurrection morning when "All is well! All is well!" All we have is today, this hour, this minute, this second to be the best we can be and do all that we can do. Then we turn to the Savior and we say, "Thou knowest. Carry me a little way, walk with me a little way, talk to me, and let me feel the light at the end of the tunnel, for mortality is only a drop in the bucket of eternity, and I look forward to that greatest of joy--eternal life with thee and all of these I love."
We are here and always will be. Love having a great daughter-in-law and soul mate. Love, Mom
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