Autism Speaks Walk tomorrow

I am so excited for tomorrow. We will be walking with Autism Speaks for our Porter. If you have ever been on a walk it is a really amazing experience. You spend that time thinking of those you love that are going through this and how their life has been effected. I have not been able to walk yet with Autism Speaks because I have been pregnant and due right when they were having the walk so I am so excited. I have been waiting for two years for my chance to walk. Every time I see the youtube video about that Dad who pushes his son in a wheel chair through races and triathlons I have wanted to have my chance to do something so small as walk for him. I have had the opportunity to go on walks for Diabetes and that was a wonderful experience for me. I learned a lot and was able to think of those I love suffering with diabetes. It was a great chance for me to educate myself on the reality of that disease as well as show my love to those who suffer this everyday. We love our little Brenner and everyday we pray they will find a cure. It was great to show our good friends that we love and support them. Now I will have to opportunity to walk for Porter and I know firsthand what life with Autism means to him and us as a family. I will also be thinking of my Grandmother. Who without Porter's diagnosis we would have never known that she was autistic. We always knew something was really wrong with her but never had an answer. This answer has brought a lot of healing to my Mom's family as well as siblings who know now that they have Asperger's or autistic traits. I know what life has meant for them without a diagnosis. It has meant lots of pain and confusion. I am amazed that my Grandmother has functioned so well in her life because she really struggles. I am amazed at my Mother who was raised by a Mother with autism. That has meant so many things. As you can imagine my Mother was not raised by someone who could nurture her or really show much love, and affection. My grandmother is a wonderful woman and she shows her love in different ways than most of us do, but I know things have been really hard and I look forward to the day on the other side of the veil when I will be able to put my arms around her and know that she is whole.

I want to take a quick minute and share just a little about what it is like to find out your child has autism. This is really personal and difficult to explain but I hope you will let me share this with you. It is a healing thing to share. I always tell people to not judge someone who is grieving because they are just trying to cope and get through. You can't always choose how you personally will react, it becomes about survival. I hope you will take from this some understanding of me as a person, but also I feel this is one way I can honor Porter, by educating others. I want to share why all these families and friends will be walking tomorrow.

We knew something was wrong with Porter but did not know what it really was for a while. The diagnosis was a long process to get and we really had a good idea that it was going to be Autism. I remember thinking that because we had been going through the process for awhile and that along the way doctors and therapists would tell us that it was probably autism, I thought I was prepared and could handle the diagnosis. I remember the day I went out to the mail and there was a letter from the doctor (that is another story for another day but it still ticks me off that he told us through a letter, pansy). I opened it up and there it was Autism, along with that was the word severe. Immediately it was like my world did a 360. I was in shock, and overcome with sadness. My mind started racing thinking of what life would be like for him. I knew it would mean therapy, special needs programs and unfortunately a stigmatism. I knew it would mean challenges for him everyday. But the word severe really was hard to swallow. I kept thinking will he ever? I called Dallin and told him it had come and it was autism. We spent a minute talking and grieving together. Dallin was able to move through the grieving process a lot quicker than I was. Acceptance was easy and he was ready to get to work. I know that without that I am not sure I would have had the strength to get to work. The grief was overwhelming. It took all I had to push through it and get him the services he needed. I have learned that I am a fighter and even when it hurt so much for him to need a service or to hear all the negative things I heard daily about him and what he can do, I was able to push and push for more. But the grief was different. I tried many things to cope, I would try and push it away so I could function. Or I would take a day off from therapy and let myself cry and mourn. But I have never in my life experienced something as painful as this has been. It may sound weird to explain it this way but as I have talked with many other parents and with counselors they all say this is normal and natural. But it felt like a death. It felt like there was two Porter's one before the autism that I had dreamed about and would do all these things like play soccer, go to kindergarten, make friends, go on a mission, get married and have a family. The second Porter was one of unknown realities and I knew somethings may never happen, and I began to worry about his future. How would he be treated, how will his siblings cope, what will happen to him if something happens to Dallin and I? What if he can never live away from home? What if he never talks or can use the toilet? What if he stays this aggressive and he gets bigger, how will I keep myself and my kids protected? It felt like a world of will he ever. Even though I could accept that he really did have autism, I found myself hoping that I would wake up and this would just be a nightmare I was hoping that things would go back to the way I had hoped. I found myself bargaining and telling myself if I just pushed him hard enough I could still fix this and make him better. I could still have all those dreams. I became angry. Why did this happen to us? Did we do something wrong? I became angry at other families around us whose children were developing normally. I became angry as the realities of the weight set in that I was having to bear this burden. I became angry that I could never leave the house or do the smallest things like brush his hair without a full blown melt down. Mostly I became angry with myself. I was convinced I had done something when I was pregnant with him that caused this. Or that I had not been a good enough Mother, that maybe I was just not good enough at disciplining him. Then when it set in about my Grandmother I felt guilty that I had this gene. The depression became unbearable and I had to meet with doctors and counselors. I had to learn how to cope and deal with grief. The hardest reality was that just as things were going good and I was doing great a new milestone would not be met and the grief would come back. That for me is the hardest reality, grief will be a lifelong process for Dallin and I. I worry that as those times come that I will deal with it like the first time, I am learning to be less scared and it helps me deal with the hard days. I am learning to trust myself and all the knowledge I have gained and it helps me so much more. But above all it was so hard to watch Porter have to work. It was so hard to see him pushed way past his limits. It was hard to have him working 30-40 hours a week with therapists. The driving and the need for me to be in every session was overwhelming. I had more than one child and I constantly felt like my other kids were not getting enough time with me and enough time out of the car or therapy sessions. My kids have all grown up with therapy as a big part of their life. Luckily they have never known any different. As Porter has gotten older it has been hard to see him begin to understand and feel that he is different. Just a few weeks ago he was playing with some kids and they didn't want to play with him, he couldn't understand it and he was angry at me. It was so hard to watch him hurting because other kids did not want to play with him. He sometimes gets teased and that is hard to watch. He gets treated different and he gets stared at a lot. If we are out somewhere and he is freaking out we get lots of "advice" on what I could be doing to solve this problem. I know what my personal weight of this diagnosis is but his I know his is even greater, and I admire his courage and how hard he works to push himself. He has done so many things I wondered if he would ever do and I feel like that has had so little to do with me, but more to do with him as a person and with much faith extended on his behalf. But without all of this pain I would never have been able to see miracles. I would never had the opportunity to see in myself how strong I am. I know my husband and I would not be this close, because this has brought us closer than anything. My testimony has come to me in such a strong and powerful way. I have learned to depend upon the Lord. I feel him sharing this weight with me and carrying this burden. I know his weight is much heaver than mine and I am so grateful for him. My love of God is firm and I know when I feel alone and that no one around me understands what this weight is like, I can get on my knees and share that with God and know they understand me and that I am not alone. My love of the scriptures and my dependance on them has grown so much. I cannot imagine a day without reading because I need the spirit to strenghten me. I understand so much deeper the healing power of the Savior. Without it I would still be overcome with grief. I have been blessed with that healing and know that the times in my life when I will need it again it is always there for me. I hold dearly the knowledge that one day Porter will be made whole, and that if I want to be with him and spend eternity with him and see him experience those dreams I have for him, I have to be worthy. It is my constant reminder that I can do more, and be more. That I need to repent and be better. I have an eternal perspective everyday in my home. I have been blessed in more ways than I ever could have dreamed, and I know without Porter's autism we would have never had this much joy in our lives. Autism for me is something now that I know is painful, but I also know the joys along the way.

I hope that will give you a glimpse into the reality of those around you who are going through this journey. I hope as you see families like mine who may not be able to tell you what is going on, you can remember what I have shared and can extend and arm of love and a listening ear. I hope that someday we may have answers to what has happened to him. I hope that someday we can prevent other families from going through this. I hope that the rise in autism will stop and that we can provide more help for families. I am grateful for organizations like Autism Speaks who provide education and are the leading source for autism research. I have used them many times for answers and help. I have been able to go there to find out about what services are available, who can provide them in my area, and what the research shows on that therapy. I am excited to walk tomorrow to say how much I love Porter. If you are in the area and want to join us you can join our team and come walk with us. You can do that by going here and signing up to be on our team. You need to sign up anyone coming with you over the age of two.

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=331507&lis=0&kntae331507=055BCB8714D14C7D97FBAF6912F36041&supId=0&team=3

663641&cj=Y

If you will not be in the area or cannot make it but want to do something you can donate to autism speaks. You can donate as little as a dollar and it all helps. Here is the link to do that.

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=331507&lis=0&kntae331507=56032A94041B401BBA07726F81CD6F97

If you cannot do either just keep Porter in your thoughts tomorrow. I cannot express enough how much it means to us to have the family and friends we do. You have all lightened our load and amazed us with your kindness and faith. We love you all so much and appreciate you cheering Porter on. We know that he is doing so well because of all of you.

With love,

Season