All images ©2011 Leanna Keathley
Please tell me that I’m not the only parent that didn’t get a manual when their sweet bundle of joy was delivered!
When we took our first package home over 19 years ago I was a little worried at times, wondering if I was taking care of him like I was supposed to but I was young and he hit all his milestones as he should, so I disregarded the thought of getting a parenting manual. When the next one came along 8 years and 11 months later we had this routine down and he hit his milestones as expected. Both boys have turned out pretty well. We’ve had a few hiccups in the road but they are both well behaved (most of the time), well mannered (at least outside of the house…which is the most important) and have both been honor roll students at school.
When our last gift (a surprise package) was due to arrive we had learned not to expect a manual, and that was fine because this was our third (and final) one…and we were ‘older’ so surely we could just handle with the same care as we did with our previous gifts, right?
Wrong!
This child has a whole different different set of rules for us to follow! I’ve tried throughout the past 4 1/2 years to find a manual somewhere…and you would think with all the online manuals you can get that there would be some PDF file somewhere that would tell me “if he does this, then push this button” or whatever!
So far I’ve had no luck finding a manual that tells me what therapies to try and how often he should have them. Is it enough that he gets Physical, Occupational and Speech therapy at both his public school and his other school/daycare? Should I be doing more to help him be self sufficient…sit, walk, talk, feed himself? Or, does he need a break in the evenings and weekends to just BE as he is?
If I just had that manual that told me if I should try ABM, Hyperbaric Therapy, Stem Cell Replacement Therapy, or something else out there that I haven’t researched or even heard of. And, should I be trying to raise funds to pay for these treatments as I know insurance will never pay for these and they are WAY out of our price range. I want that manual that will tell me which ‘thing’ we should use to help Cole.
You notice I say “help”? I don’t expect a ‘cure’! I love him (more than anyone will ever know) just like he is! I will do everything possible and necessary to help him LIVE his life! I also am pretty sure that if there is a manual out there somewhere, in the description of my job as a mother, it would say I need to teach my children how to be independent, to be self-sufficient…and I want him to enjoy life!
Some days I just need that manual!! If you happen to find one for this model (child, male, w/cerebral palsy) could you please forward a copy to me? Thanks!
I love you. I love Coley Bug. I want that manual when you’re done with it…
Heather, you know we love y’all too!! I still have not been able to locate a copy anywhere!!
We were a family of five, last december we became a family of seven. Our family foster’s two men both in their late forties with special needs,how this came about is really,too long of tale to fit in this little box. One gentleman spent most of life in a hospital, and was labeled non verbal.”They” said he could not communicate his wants and needs and would become frustrated very quickly.Well,9 months later he is talking up a storm, and drum roll please..he can speak two languages!Now some words I wish he did not say ‘if you know what I mean’ especially in the grocery store when the line at the cash is too long, but I can’t have everything.We do have much respect,understanding,frustration, good days and bad days and most of all much love,and with that we can do anything. You have a beautiful son, his picture reflects love,light and happiness and with that he can do anything! Thank you for your blog, you and Cole inspired me today!
Wow! You inspire me! To already have a full family of five, then to add two adults!And with special needs! That is SO awesome that he has found a way to talk!! Was there something different that you did with him in that 9 months? Cole can not say words (except several times he has said ‘momma’
) but he sure finds a way to let me know when he wants something. He is such a smart little boy and I have no doubt that he will do great things! Thank you so much for reading my blog!
I would repeat every sound he made, but slower and because I speak both French and English, I would repeat the sound using both languages,thus putting the emphasis on different parts of the sound. He was admitted to the hospital when he was 5 years of age directly from his home where he spoke one language and unfortunately the hospital was unilingual in another language, so 45 years later it was a mishmash of babble..So we started slow ..by me repeating he knew I was trying to understand and maybe hearing the French tones soothed him..I do not know but now he asks for his “Bain” in the morning (French for bath)…he says “I go eating” or “mercy”(French for thank you)..he stands by the car and say “auto” another French word and when I don’t agree with some of his choices he calls me a bad girl..His vocabulary is improving everyday and his anxiety is decreasing but it was not easy, somedays I was forgetting how to speak! Keep bloging Lori
Hi
my name is Jenna and i came across your site. Cole is an amazing, special and precious earthly angel. He is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook.
Thank you for visiting and all your kind words! I think he is an angel too!
I pray that you will be relieved of your pain.
I stumbled across your little place on the web some time ago and enjoy stopping by. It’s very kind and brave of you to share part of your life with the world. Your boy is certainly a handsome little fella. I have given your search for a manual quite a bit of thought and have determined that it is likely better you haven’t found one. It might be easier to know which road to travel, but you’d be travelling someone else’s road and maybe it wouldn’t go in the right direction for your boy. After watching my sister grow and participating in raising her, I’ve determined that the most helpful therapies for her weren’t therapy at all, The times when we broke from whatever program we had embarked upon to aid in our crusade for her independence were the most valuable. These were the times when we said enough was enough and we acknowledged that there are things she may never do. It doesn’t mean we quit trying, we still do, we just opted to focus on her living her best life, not our best life for her. Keep encouraging him as you do, advocating for him as you do, and love him as you clearly do and all will be well. Best wishes for your child and your family!
Charity, thank you for continuing to visit (I tend to get busy and have not updated in a while) and for your kind words! I think you are correct…maybe Cole IS the manual? I just have to know how to ‘read’ him!
I agree, sometimes the ‘play’ time at home seems to be exactly what he needs to reboot to have the energy, or the ‘want to’, for his therapies the following day. I want to thank you for this sweet reminder as just recently I’ve started to dwell, or dread, his 5th birthday coming up because it makes me question if I am doing enough of the right things for him. Thanks and best wishes to you too!