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description= I m Patty, and my husband and I are living with our adult son who has autism and epilepsy. I love sharing lessons learned from life around me, especially life with Aaron.;
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Text of the page (random words):
that acknowledgement is coming with some resentment on his part it s showing up in some small ways that we pray don t grow into big issues yesterday he told me that he misses my cooking never mind that many times in the past he was not thrilled with my dinner menu he is conveniently disregarding that fact this morning he called and told me that he wants to come home to sleep in his own bed he wanted to know why he can t do that these are tricky conversations we are broadsided with them and unsure how to answer them except to assure him of our understanding and our love the first sunday afternoon that i picked him up to come home he wanted to bring his entire basket of music cds with him as well as several of his handy answer books he finally agreed reluctantly and with frustration on both our parts to bringing only a few cds and one book on that day he just wanted to stay a short time at our house he did the same thing this past sunday just a brief stay and he was ready to go back it s largely because all his things are at his group home now and so our home doesn t feel like his home to him now in fact the other day he was talking about coming home when i come to he started he didn t know how to finish when i come to our old house he finally said it s an adjustment that all of us have had to make when we have left home it s just extra hard for aaron and still very new we have encouraged aaron to call his group home his house instead of calling it victoria s house he s getting there but slowly another aspect of aaron s adjustment is that he is showing more of his typical bluntness and anger that s because the newness is wearing off and he is feeling the stress of his new life more he got very upset after we left him on sunday because victoria also left on a quick outing with her family he called and wanted gary and i to come back it was so hard we talked to him as long as we could but did not go back the on call staff who is also the residential coordinator went over to help she knows aaron well and was a lifesaver in fact both the house staff and the day group staff have been so amazing they love aaron understand him and know exactly how to work with him and help him process all the new challenges and his emotions that come as a result the medical office coordinator made aaron the cutest bedazzled goose to match her big one in her office that he loves so here we are navigating the day to day as aaron grapples with the long term reality of his new life this was a necessary decision we made for aaron but necessary decisions are seldom easy so many of you have helped tremendously with cards visits gifts words of encouragement and prayers especially your prayers sometimes i still cry like i did yesterday during lunch with a friend or sometimes at night when i pass aaron s dark room but i know that your prayers are upholding us and giving us a calm that can only be explained by god s peace that passes understanding we are not unaware of the impact each of you is having on us and on aaron through your love and prayers and for that we thank you so much author patty hesaidwhatks posted on august 26 2026 categories adult autism answered prayer caregiving caring epilepsy special needs adults transition 14 comments on aaron s move our old house working in the dark a couple months ago i looked out our kitchen window above our sink and there to my dismay was a tunnel web built by a hard working spider the web was between our window and the screen now spiders and i don t get along too well yet despite my instinct to get rid of that spider and his web i had a degree of respect for his hard work and so i let him stay he was very industrious he built his web larger and longer as time went by one recent day as gary worked outside he decided to use his blower to get rid of the web and hopefully the spider good bye spider time to go but the next morning i went to the window and there was a fresh new web that spider had worked during the dark night to rebuild his web and start over impressive i must say i thought of this as i remembered a devotional i had read not long ago from streams in the desert the author talked about how the children of israel came to the red sea after god led them out of egypt their situation seemed hopeless at that point but god sent a strong east wind all that night and caused the sea to part he gave a cloud that provided light and led the israelites through the sea on dry land all seemed lost but god worked in the night the dark didn t stop him our dark times don t stop god either we may not see what he is doing but he has not quit working his best in our lives during the dark times in fact it s during those times when i can t see him working that my trust in him has grown i don t have to see his work to trust that he is working if my trust depends on my sight then i m not trusting him i m trusting what i can see in the morning i saw how hard our spider worked during the night likewise someday i ll see how hard god has worked in my dark times for you light my lamp the lord my god illumines my darkness psalm 18 28 author patty hesaidwhatks posted on august 19 2026 categories faith god s work peace trials trust 10 comments on working in the dark aaron s move it s easier there aaron called me first thing this past friday morning he calls first thing every morning from his group home we re very glad we bought him a cell phone but still his voice was low and flat he immediately told me the reason he was having some intestinal problems this is nothing new for aaron but it s the first time he was having to deal with this issue at his group home mom he asked can i come home it s easier there i was still rubbing sleep from my eyes and wasn t mentally prepared to wisely deal with this much less handle the onslaught of my sudden emotions i did know though that this was our first test and as aaron and i talked i also knew that if i caved i wouldn t be allowing the staff both at this group home and at his day group the opportunity to handle this problem going against my mother s heart i encouraged him to let the staff help him even as i tried hard to swallow the lump in my throat i could not let aaron sense that i was upset he protested even as i portrayed over the phone my confidence that he would be fine fake confidence honestly not that i don t trust the staff at his home and day group they are wonderful but letting go of aaron like this is hardest on me my phone soon rang again one of the staff was asking in the background where aaron s clean sheets were i could hear her and others comforting aaron as they assured him that they were there to help they changed his sheets and took care of everything at paradigm his day group the nurse gave aaron some medicine and let him stay in her building for awhile he called later and sounded much better he even went on the outing that day and had a good time i understand that the pull of home hits aaron at times especially when he s physically struggling that pull affects me even harder because it hits my mama heart i must go against my instincts but i know it s best for aaron in the long term to learn that his staff will now care for him during these times he s not the only one who needs to see this i do as well it would have been easier at home yes but would not have been the best decision talking about this first test still makes me cry but i also know that we passed the test not only because of the caring staff supporting aaron but also because of our caring god who is walking beside us at each step and because of each of you who are praying and lifting us up thank you so very much author patty hesaidwhatks posted on august 17 2026 august 17 2026 categories adult autism blessings caregiving epilepsy faithfulness god s care special needs adults trust 23 comments on aaron s move it s easier there aaron s move i wish you were young aaron is nearing one week of living in his new group home he has done amazingly well yes he has asked if he could come home to stay on friday he called early to tell me that he didn t want to go to his day group he wanted someone to come and stay with him there i told him he couldn t do that and he was not very happy about that reality but the wonderful house staff as well as the staff at his day group helped work him through it and he had a good day our sweet neighbors went to visit him yesterday afternoon aaron was so surprised and happy today our daughter and her family went to see aaron he was super excited about that ryker and cora got to see unkie aaron and his new room aaron was able to do his favorite thing sharing snacks with ryker and cora thursday aaron and i went to deliver for meals on wheels he got to tell all our dear clients about his new house we went to walmart and out to lunch aaron was happy that dad joined us back at home he got one of dad s great haircuts and shaves i trimmed his nails and we watched hudson and rex when aaron had gotten in the car that morning the first thing he asked was if he could stay at home and not go back to his group home but by the time his show was over he was ready to go back to his new room and to see victoria we were so relieved and so very proud of aaron yet there are glimpses of sadness that he shows us as he adjusts to missing us and missing his home his old life his friends here in the neighborhood and in the stores we have frequented for years we got aaron a phone and on the first day he had it a friend showed him how to facetime before we could do that he s loving it he and i were on facetime last night mom he said you look old like an old lady good old honest aaron well i said as i laughed i am old aaron i wish you were young he flatly added then i wouldn t have to be here that was a gut punch for me you see for a couple years we have been trying to prepare aaron for the fact that someday he would need to move he didn t like talking about that and would ask us why we would make him leave one reason we gave him was that we were not getting any younger and wouldn t always be able to care for him he knows how to touch the deep places in our hearts without really planning to do that he s just very honest with what he s seeing and thinking and that one that really hit hard i stumbled around saying something that i hoped was encouraging as i blinked back tears i didn t want him to see i realize how fragile i am aaron too and gary s been hurting in a way that s new to him he told me that even though we ve known for all these years about aaron s handicap now we see it differently and more clearly than ever we see it in a way that shows how vulnerable aaron is and how this huge change has rocked his stability and his comfort we feel responsible for that but we also knew that this was a decision that would ultimately need to be made one day it s just that we ve made sure aaron was well cared for in every way for nearly 42 years now he sees us as being the reason he had to move and leave us and everything he loves that s a heart wrenching load to carry right now we know that all these feelings will ease with time for us and we pray they ease for aaron as well he really is happy where he is and we are very pleased with his progress this week but we can t turn off our love for him and our concern that he knows we have not abandoned him we have shown him perhaps in the greatest way ever how deep our love is for him as we have given him a future that won t depend on us being around forever he ll probably never fully understand that until the time we re all together in heaven and guess what aaron i won t ever be an old lady again author patty hesaidwhatks posted on august 9 2026 categories adult autism caregiving epilepsy love special needs adults 21 comments on aaron s move i wish you were young aaron s move don t disappoint me monday night was aaron s first night in his new home and our first night without him in our home i woke up tuesday morning unplugged my phone to take with me and automatically reached for aaron s baby monitor old habits die hard fresh tears came quickly i had been out of bed less than a minute when i was hit full force with the reality that aaron wasn t here that i didn t need the baby monitor with me to listen for seizures then i checked my phone and saw that i had missed a call from aaron his house has a phone and i hadn t heard his call i felt so terrible but then he called again and i quickly answered he sounded good though tired he immediately asked when he could come home for a visit i asked no he answered to stay i felt my heart being ripped out again as i told him that he couldn t stay but that we would see him on thursday for meals on wheels and lunch then he asked if gary and i could come over to his house that afternoon for a visit we were leery of visiting so soon worried that it would upset him and he wouldn t want us to leave without him aaron i said we re afraid you ll want to come home with us and you ll be upset no he insisted i won t ask to come home please don t disappoint me and there went my heart and my tears which i tried hard to hide from aaron in my voice gary and i talked about it and prayed about whether we should go see aaron so soon we needed to get him a phone and we would have to show him how to use it so we made the decision to go and trust the lord to let it be a good visit we pulled up in the driveway and soon aaron burst out the front door hey he yelled hey we yelled back then came hugs and huge smiles and lots of talking he was so happy to see us and we were the same victoria was thrilled to see us too she stayed right there with us in aaron s room it was honey this and honey that as she talked to aaron the visit was great aaron would rush in and out of his room as he talked to the staff my mom said to tell you he would tell them or my mom wanted to know no i didn t i would add they re getting to know aaron as we left aaron gave us more hugs but didn t ask even once if he could come home gary and i drove home feeling huge relief and joy god gave us a very sweet gift yesterday despite our concern it felt so good that we didn t disappoint aaron and even better that god didn t disappoint us this morning in my study of psalms i read chapter 6 i am weary with my sighing every night i make my bed swim i dissolve my couch with my tears my eye has wasted away with grief for the lord has heard the voice of my weeping the lord has heard my supplication the lord receives my prayer prayer doesn t change things but prayer lays hold of god who changes things and who in prayer changes you dale davis this is such an important truth for those who are believers sometimes the biggest change that comes when i pray isn t that god changes my situation it s that he changes me as i submit to his will and his plan even if i can t see it or i see it and don t like it he honors my trust in him by giving me incredible peace and strength sometimes our prayers are 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