where parents of kids with special needs connect
Greetings from Colorado, I am a mom to Apraxia/Sensory challenged wonderful little boy....
Greetings, I stumbled across the link on another website and have spent the last hour laughing and crying with all of you! Wow, people that really can relate. Okay a bit about me...I am a divorced 37 yr old mom, living in Colorado, I work from home and show horses in my "spare time". I am also the mom to the most wonderful 3 yr old in the world, my son Tanner. The fact that he is here is a miracle (long cancer related story) and he's the light in my life, the spring in the step and the beat in my heart. He is also special needs....He has apraxia (delay of speech), mildly autistic (depends on what therapist you ask) and has sensory issues (won't touch sand, eat textured foods, etc.). His speech has been our biggest challenge and I am thrilled to say that in the last year, with twice a week speech and OT therapy he's progressed from 15 words to 44! Sensory wise, it's hit and miss. Food has been a huge issue, just this last month we've gotten him to eat ice cream and french fries. I know, I know, who would encourage that, lol, but considering he's a self restricted Vegetarian with only a handful of foods he'll eat, we'll take anything. He's better about physical textures, ie: sand, snow, mud, but still iffy. Loud noise has been a constant challenge, and that's what triggers some of the autitic type reactions, stemming, and such. While I would not take a million dollars to change my child my goal is to make his life as warm and comforting and enriching as possible, so he can be his own success, maybe not societs idea of a success or heaven forbid "normal" (whatever that is anyway). He's just started pre-school, which is going okay, it's a small private pre-school with only 10 kids, the language delay is showing up alot, other kids his age are speaking sentences and he manages only one or two words. The other day was a mom tear jerker moment...in which I saw another kid ask him a few quick questions. I saw my son Tanner, trying to form a response, but in the 30 seconds it took for him to put the words together the other child, replied, oh never mind, I don't want to be your friend anyway if you won't talk....broke my heart and sent my little one to me to hide behind my leg. I wanted to say, please, just wait, he wants to be your friend, just give him time to respond, but how realistic was that to say to another 3 yr old, not ever and I realize that. But it was one of the first times, my heart broke for my son, as his challenges, cost him some good play fun. Heavy sigh, that said, I would not change anything about him or the life we lead together. I look forward to getting to know all of you.
Jen
Replies to This Discussion
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Permalink Reply by J. on -
glad your here. It is so hard to watch our kids struggle and find their way in a world that is not always understnading of their needs.
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Permalink Reply by Pia on
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Hi! Welcome to Hopeful Parents! I am also a mom of an Apraxic little man (Jonathan, 3) who sounds similar to your son in a lot of ways. He has less sensory issues, except for feeding, but he also has a fairly significant receptive language delay. He probably is autistic, but at this time we aren't embracing that diagnosis because it doesn't really capture who he is. We are in wait and see mode. Anyway, feel free to email me or check out my blog: http://jonathansvoice.blogspot.com . I would love to hear from you.
Pia
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Permalink Reply by Michelle Corkish on
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I also have a three year old (Eva) with apraxia of speech and sensory integration concerns. My daughter is also beyond sensitive to pretty much anything food related. We nearly threw a party when she ate a chicken nugget last week. We've also really held off on the 'possible spectrum diagnoses' as we have a (just turned) 14 year old (Emma) who presented very similarly as a toddler/preschooler and is now considered intellectually gifted/learning disabled/profoundly apraxic. Sometimes I wonder if the sensory stuff some of our kids experience isn't just part of their unique learning pattern. Emma was also very sensitive to most foods, particularly meat, which she just added back to her diet about a year ago. Guess that's my long winded way of sharing a positive experience. I have so many painful memories of watching Emma attempt to interact with others unsuccessfully. Now she has a reputation for being outgoing and sensitive and her educators are calling her 'socially successful'. She uses a communication device sometimes and technology for reading and writing also. Nice to meet you :-)
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Permalink Reply by Kimberly D. Lavoie on -
Sorry I am responding so late. I wanted to let you know that I wrote a social story for my daughter's typical peers at about that age. In it I tried to explain her differences on a level they could understand, but also explained that there are many things she can do and enjoys doing that they also enjoy. I shared it with all of the parents at her preschool and asked them to personalize it and read it with their children. It helped the whole community be more understanding. These kids still greet her eagerly when they see her even though she has now grown more reserved with them since she doesn't see them often anymore. I'd be happy to share the text of the story with you if you are interested.
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Permalink Reply by Jennifer Bulger on
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First of all my sincerest apologies for my lack of responding sooner. Unfortunately on the 16th of February my son Tanner fell and hit his head on a bar at the playground and suffered a linear skull fracture and slight stroke. It's been 6 weeks of a nightmare of hospitalization, catscans, meds and meeting with more doctors than I ever wanted to see. We are home now and adjusting, he has some possible long term side effects from the injury, but we are taking it one day at at time and I am so grateful that he's still here with me. I'd love to chat with any/all of you, I still don't know anyone that can even pronounce Apraxia much less has any experience with it, lol. I will try to do better at checking this site, but I can also be reached at tesnjen at aol dot com
Blessings silent and joyful to all of you, Jen
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Permalink Reply by Kimberly D. Lavoie on
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I'll be praying for you as you contend with this new struggle. I can't imagine. One of my kiddos was in the hospital for just a few days over New Years and even though it was a short term problem MY recovery time was quite lengthy. I can't even type something that doesn't sound trite in this situation...but I hope you will find the support, encouragement, and rest you need at this time.
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Permalink Reply by Heather Innis on
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Hi Jen,
My son Ethan is 4 years old and has apraxia and autism (and is deaf with cochlear implants) as well. Your story about his school experience is certainly a heartbreaker. We moved about 2 years ago to live in Cincinnati, Oh. where there happens to be a school for the deaf that has an amazing program for preschoolers (and beyond) with apraxia. They use total communication and have OT and Speech therapists trained in PROMPT. They also use the Montessori mode of teaching and it's incredibly successful with apraxic kids for some reason. My guy did really well there his first year, but his autism took the driver's seat this year and they are not really as set up for autistic kids, so we'll be going to a different school next year. I wish you and your little guy all the success in the world. You sound like you have a very strong and positive spirit and that will take him so far in life.
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Permalink Reply by Tammy on -
Wow, you could be describing my daughter about nine years ago with the exception of the social part (she never has wanted or seemed to need friends). Time flies and she is not that little girl anymore. She is still delayed as they say, but she is so much more. I am new here too.
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