Ty:? Mommy on Easter I don?t want to do the three legged race.
Doni:? I know Ty.
Ty:? And I need help this year getting the Easter eggs.
Doni:? Okay buddy.
We had this conversation leading up to Easter several times.? We go to Brooke?s parents with all of our friends and family every Easter.? Because they live on several desert acres, the terrain is difficult for Ty so he typically fails to fill his basket.? In preparation for this, when it was egg hunt time, I went looking for my son.? I was ready to help him and determined he would not be short changed this year.
When I saw him in the distance, a lump formed in my throat.? On a small hill, about 20 yards away, I saw that someone else had beat me to it.?? It was a long time family friend who is mentally disabled.? She had him by the hand and the two of them were working together to get the job done.? It was a beautiful sight but I still couldn?t stop my tears.? So many thoughts going through my head about Ty?s future.
It seems I go through a time of grief at each developmental stage.? I find myself trying to figure things out and so often there are pieces missing that keep me from seeing the bigger picture.? I keep most of this inside because there are few who can honestly relate to what we are going through (few within our circle) and it becomes too difficult to put words to all my competing emotions.? I would imagine that I would not have to explain much of this to another parent of a child with special needs.? I think it is just part of the journey.
While standing in the distance trying to sort through my emotions, I realized I was in need of the one person who was wading these waters of uncertainty with me.? I went and found Jim and he quickly realized that I needed a minute of talk time.
Jim took me aside and I explained.? When I was finished he said ?Doni ? what you saw ? that was a beautiful thing.?? I agreed.? Some things still hurt though.? I smiled to myself because Jim?s comment was very Jim.? He comforts in a very left brain sort of way.
While we were standing there, my brother Daniel approached.? There were over 100 people at this Easter gathering but I would guess that I have known over 85% of them for more than 20 years so it was still a very intimate group.? No surprise that word spread throughout the camp that ?Doni was upset? in record time.
Daniel?s first words were ?What is wrong?? Did I do it??.?? I smiled again.? How very like my brother to word his question that way.
During the three legged race, my brother David came and put his arm around me.? ?Who did it?? I?ll kill em??.
(I should also take a moment to note that Ty did in fact participate in the 3 legged race because Brooke?s niece Arianna made it her goal to convince him.? She knew that he was going to have trouble but she was determined to give him a good go at it.? They won.? My heart swelled with affection for Arianna on Easter).
When I was about to leave, my brother Darin says ?Doni hold up!? Hey.? A whole lot of people have come up to me and said that you were really upset about something and that I should come find you and see what?s wrong.?? So??(long pause)?.what is the matter????? My smiles have turned into laughter by this time.
Oh how I love all the men in my life.? Each one of them came to say ?I love you? in their own way ? in their own language.? I understood what they were saying to me because I understand them.? I know who they are and how they process and when they approach me in their own unique ways, I see them.
I see my children too.? I put a lot of time into just knowing them.? When it comes to my darling boy Ty, I realize more and more how important it is to me that I serve as a bridge for him.? He needs someone to stand in the gap and help him understand how to relate and live in this world.? He also needs someone to teach his community what Ty?s world looks like from his perspective so that they can come alongside me and help me embrace Ty and support him as he ventures out into a world that makes a different kind of sense to him than to others.
And so I begin?
I don?t know what I think until I read what I wrote.? That is the best kind of therapy for me.? I have written several postings unique to Ty in the hope that I can improve my own understanding and therefore parenting methods and also educate all in our circle.? I will begin posting them daily.? If you are in anyway connected to Ty?s world, would you please invest time in following my ?Ty?s World? postings?
Thank you for loving our boy.? – Doni
11 responses to “Ty’s World – Living on the Spectrum”
Doni,
I just want you to know that this post has brought tears to my eyes.. My youngest Ruthy has Epilepsy..and we spent a very long day at St.Joes yesterday.. With Neuro Psych.. Ruthy sometimes is so miss understood.. and I fully know that everything is in God’s controll, but as her “school days approach” i want answers… not so much for me, because she is my Joy, my strength, and completes my life to the fullest.. but I DONT WANT ANYONE to miis judge her.. especially her teachers!!
Thank you for sharing everything that you do….:)
Malia
Doni…love you and your precious family. Ty is such a precious gift and touches each one of us with his genuineness and love for life. Thank you for sharing your heart and your rawness of where you are at and how we can come along side. I am thankful for your friendship and love. Love that your brothers remind me so much of my own…blessed we are. Love you.
Doni,
I have a nephew “on the spectrum” and so often my significant other has difficulty understanding this child I love. He tries, don’t get me wrong, but I watch that particular child with different eyes. I see his motivations differently. I try, in every way I can, to express these things to the man who holds my heart, but sometimes I just have to tell him “you can’t understand, and that is okay, but you have to trust me”. These children, they are such an amazing blessing and sometimes such a frustration. The little things are so big, both to them and to us. In completely different ways. I am not in your Ty’s world, but I sit on this side of the screen admiring your transparency and grateful to know you – even if it is mostly through this bloggy world 🙂
I have been following Ty’s journey through your blog since he was only a few days old and I clicked a link posted on Babycenter asking for prayers for this tiny, precious life. I was smitten with him instantly. I prayed for him and checked in to read about him every day. I didn’t know at the time all of the blessings that he would bring to my life – that I would years later get to meet him and his family in person and give him a big, real life hug. And that I would get to develop my treasured friendship with his Mom, the loving, big hearted person who wrote all those posts about her little boy. I look forward to following the newest “Ty’s World” postings, and I want to offer all my love and support that I can give, albiet from afar, for Ty and for you, Doni, and for your whole family
Doni, he is so sweet! Such a gentle soul full of love and happiness. The tears only help us see how tremendous Ty is and there couldn’t have been a kinder person to help him on his hunt. How precious that God had this person to help Ty, that she could be the adult that encouraged and showed him the right path, “towards the eggs”. And that Arianna would work make it her mission to help Ty see the fun in the 3 legged race regardless of a win. The win was just the Cherry on Top! 🙂 God was definitely working in our hearts that day.
The men in your life love you unconditionaly…what a BLESSING. 🙂
Thank you for letting us into your heart and your world Doni. I love your Easter story. We love your Ty boy and your family…and you bet I’ll be reading your Ty’s World posts!! love you!
Much love to you. Thank you for sharing your heart so that us mamas outside of the circle can try to understand. SO glad you are surrounding by such a community of love.
I know we dont know each other in real life (LOL) but I had tears just reading, I want to come and give you a BIG HUG <3 Ty is so lucky to have you for a Mama and yourfaamily is so lucky to have TY. Love you with all my heart.
We have talked before about how God chose our children for us… God definately chose you and your family for Ty! 🙂 That even through the tears you could end up in laughter through the support and love of your family. I look forward to meeting Ty face to face soon, but I already know what a precious little boy he is; and how precious his mom, dad, aunts, uncles, and grandparents are 🙂 Love ya!
I will absolutely invest in your Ty’s World postings!!! I, too, laughed at Daniel’s question to you. I tell you what…I can’t hide anything from him. If I’m upset/stressed/worried about something, he knows it! How blessed you are to have 4 brothers who love you and always want to come to your rescue! And how blessed you are to have Ty! 🙂 Love that little boy!!!
i’m with you sister. i’m with ty too. 🙂