In the wake of this new year, I am brainstorming the idea of starting a new blog. I think, THINK, I would keep the family blog, but need to make it private. You'd probably need to sign-up as a follower or something similar so I can send you an invitation to stay connected.
The NEW BLOG. Here are my thoughts thus far: I would write as a mom of a child with special needs. It would be more raw and honest than my family blog and hopefully have some sense of anonymity (i.e. no family photos). Instead of chronicling what we've done or accomplished in a given month/year, covering ages and stages, it would be both a wide angle lense and a close-up snapshot into life with a child who has Asperger's and epilepsy and a mom who battles migraines, struggles with perfectionism and image, and longs to know Jesus. It wouldn't all be negative; in addition to the honesty of the struggle, I'd like to highlight some of the beauty of it as well. I welcome any and all thoughts and suggestions on both content and title. My hope is that this would be both a therapeutic exercise for me (I love to write and it helps me process!) and it would be encouragement to other moms out there who may be experiencing similar issues.
I look forward to hearing from you! Thanks so much!
Thursday, January 9, 2014
Monday, January 6, 2014
WOW! a year gone...2014 it is!
So my commitment to becoming more of a "regular" blogger obviously didn't go so well. And what do I have to say for myself? LIFE...like a vacuum, just sucked me right in! Consumed me actually! But I couldn't let this new year begin without looking back and reflecting on some of the precious moments we've shared as a family, while also reflecting on some really hard moments that remind us life is precious, relationships matter, and our only TRUE HOPE is in JESUS.
Both kids have kept us on our toes...but in completely different ways! I hit the big 35 in February and continue to laugh when I consider the reality that I guess I am now in my mid-thirties. But then I see those gray, and sometimes bright and shining WHITE hairs coming in and I think, "oh no! I may actually need to COLOR my hair!"
We shared some special moments and "firsts" this year! We went to the Big Apple Circus (which was vintage style--outside, "under the big tent"), picked strawberries, I took a girls trip to Charleston and toured the HGTV Dream House. We spent time with family, Brayden and his cousins harnessed up for a Tree-to-Tree adventure that included a zipline, we picked apples, visited more than one pumpkin patch, I made my first ever batch of apple jelly and apple butter, walked through a corn maze, and Chris' business flourished. The kids turned 4 and 2 in June and we celebrated with a joint birthday party at the farm. It was a perfect day with family and friends and plenty of organic, down-home fun! We took several trips to the beach, one of which was our first REAL family vacation. It was just us and even though our trip was colored by Chris' bronchitis and sinus infection, and ended with Neely having a double ear infection, we managed to soak up fun in the sun and eat great seafood at some of our favorite spots on 30A. Fall came and Brayden played his first team sport: soccer! Chris and I had to reign in our naturally competitive spirits, remembering it was 4 yr olds who were playing! It was fun to watch him develop new skills in this area and gain a sense of "team," while cheering for others to score a goal. It also brought some degree of wincing and concern as we witnessed his aggression and sometimes overly empathetic or affectionate nature manifest itself on the field. (I'll get back to that later). Neely Jane started her first year of preschool and proved herself to be a perfect fit to her name a million times over!! First in the womb, and now with her attitude, sass, and self-assurance. She is every bit "a fighter, a champion." Twice in one week I had the kids' teachers meet me in carpool line to tell me that 1) I needed to instruct Brayden on appropriate places to use the restroom; the mulch beds on the playground did not make the list, and 2) I needed to remind Neely to keep her hands to herself. Evidently she had become fond of picking on a certain little girl in her class by hitting her and/or pulling her hair, even after multiple reprimands. AWESOME!! That definitely gave me a vote of confidence for the parent-of-the-year award I was seeking.
We also shared some hard moments. My grandmother, 94, had a stroke and was in rehab for several months relearning and regaining strength in her arms and legs. She's amazing! She was recently moved into her own apartment at an ALF and is improving more each day. Brayden began 4 year old preschool in September and within the first 2 weeks of school, his teacher had already approached me about the concerns she was witnessing each day. Once again, the question of Asperger's smacked us in the face. I sort of wanted to crumble and cry, but knew I needed to fight! Neely adjusted to school without any problems...well, other than beating up on that poor little girl! She is so confident and full of herself, that I already cannot let me guard down for a second. Her energy rivals a small puppy and actually, she's kind of like a puppy in the sense that she destroys everything! Where there's a mess, Neely's not far behind. So far, catching pneumonia and spending the night in the hospital has been the most excitement with her! And then it came...the call I'd hoped to never have.
Sitting in the middle of my discipleship group on a Wednesday morning, my phone rang and it was the kids' preschool. I knew immediately something was wrong. Brayden was having a seizure and I was 45 minutes away! This made #12. It was peculiar for many reasons: it occurred during waking hours, was not connected to sleep, lasted 3-4 minutes, and while fever did accompany the seizure, his temperature was still 103.4 forty-five minutes post-dictal. Two weeks later we saw a new, highly-recommended pediatric neurologist who spent over an hour with us, discussing Brayden and his seizures!! Our assumptions were confirmed: Brayden had epilepsy. An updated sleep-deprived EEG showed abnormalities and epileptic flares occurring in the left side of the brain during sleep. He is now on a daily anti-convulsant, Keppra. It does seem to make him a little hyper, and unfortunately for his teachers, seems to have caused a decent amount of regression in terms of the progress they'd made with him from Sept to Nov, but our hope is that over time, as his body adjusts to the meds, he will be able to sit still and pay attention and follow-through on assigned tasks. In the meantime, we're also going through a complete re-eval with the school system to identify what has changed since he was first seen and identify other areas of need. Given the number and substance of the concerns within the classroom, there's no way right now, that he's ready for Kindergarten, and YET, ironically, academically, he's ahead of his peers. He is reading on a 3rd or 4th grade level, but he also can't remember to pull his pants up when he exits the bathroom. He can memorize entire books and songs after reading or hearing them one or two times, but instructions have to be repeated OVER and OVER and given in small chunks. I know he has Aspergers and I don't care. We may not have a professional diagnosis yet, but all the signs are there. He is amazing and he is my son. And I love ALL of him...even the parts that sometimes make me crazy. But right now I'm on a mission: HOW ARE WE GOING TO GET THROUGH KINDERGARTEN?!?
So pray for us, if you would, for wisdom, for discernment, for peace in our decision making, and for Brayden to be under EXCELLENT care wherever he goes to school. Already we are so blessed to work with a team of people within the school system who care for him and want him to succeed!!
Happy 2014!! May you sense the nearness and sweet presence of God in this new year!!
Both kids have kept us on our toes...but in completely different ways! I hit the big 35 in February and continue to laugh when I consider the reality that I guess I am now in my mid-thirties. But then I see those gray, and sometimes bright and shining WHITE hairs coming in and I think, "oh no! I may actually need to COLOR my hair!"
We shared some special moments and "firsts" this year! We went to the Big Apple Circus (which was vintage style--outside, "under the big tent"), picked strawberries, I took a girls trip to Charleston and toured the HGTV Dream House. We spent time with family, Brayden and his cousins harnessed up for a Tree-to-Tree adventure that included a zipline, we picked apples, visited more than one pumpkin patch, I made my first ever batch of apple jelly and apple butter, walked through a corn maze, and Chris' business flourished. The kids turned 4 and 2 in June and we celebrated with a joint birthday party at the farm. It was a perfect day with family and friends and plenty of organic, down-home fun! We took several trips to the beach, one of which was our first REAL family vacation. It was just us and even though our trip was colored by Chris' bronchitis and sinus infection, and ended with Neely having a double ear infection, we managed to soak up fun in the sun and eat great seafood at some of our favorite spots on 30A. Fall came and Brayden played his first team sport: soccer! Chris and I had to reign in our naturally competitive spirits, remembering it was 4 yr olds who were playing! It was fun to watch him develop new skills in this area and gain a sense of "team," while cheering for others to score a goal. It also brought some degree of wincing and concern as we witnessed his aggression and sometimes overly empathetic or affectionate nature manifest itself on the field. (I'll get back to that later). Neely Jane started her first year of preschool and proved herself to be a perfect fit to her name a million times over!! First in the womb, and now with her attitude, sass, and self-assurance. She is every bit "a fighter, a champion." Twice in one week I had the kids' teachers meet me in carpool line to tell me that 1) I needed to instruct Brayden on appropriate places to use the restroom; the mulch beds on the playground did not make the list, and 2) I needed to remind Neely to keep her hands to herself. Evidently she had become fond of picking on a certain little girl in her class by hitting her and/or pulling her hair, even after multiple reprimands. AWESOME!! That definitely gave me a vote of confidence for the parent-of-the-year award I was seeking.
We also shared some hard moments. My grandmother, 94, had a stroke and was in rehab for several months relearning and regaining strength in her arms and legs. She's amazing! She was recently moved into her own apartment at an ALF and is improving more each day. Brayden began 4 year old preschool in September and within the first 2 weeks of school, his teacher had already approached me about the concerns she was witnessing each day. Once again, the question of Asperger's smacked us in the face. I sort of wanted to crumble and cry, but knew I needed to fight! Neely adjusted to school without any problems...well, other than beating up on that poor little girl! She is so confident and full of herself, that I already cannot let me guard down for a second. Her energy rivals a small puppy and actually, she's kind of like a puppy in the sense that she destroys everything! Where there's a mess, Neely's not far behind. So far, catching pneumonia and spending the night in the hospital has been the most excitement with her! And then it came...the call I'd hoped to never have.
Sitting in the middle of my discipleship group on a Wednesday morning, my phone rang and it was the kids' preschool. I knew immediately something was wrong. Brayden was having a seizure and I was 45 minutes away! This made #12. It was peculiar for many reasons: it occurred during waking hours, was not connected to sleep, lasted 3-4 minutes, and while fever did accompany the seizure, his temperature was still 103.4 forty-five minutes post-dictal. Two weeks later we saw a new, highly-recommended pediatric neurologist who spent over an hour with us, discussing Brayden and his seizures!! Our assumptions were confirmed: Brayden had epilepsy. An updated sleep-deprived EEG showed abnormalities and epileptic flares occurring in the left side of the brain during sleep. He is now on a daily anti-convulsant, Keppra. It does seem to make him a little hyper, and unfortunately for his teachers, seems to have caused a decent amount of regression in terms of the progress they'd made with him from Sept to Nov, but our hope is that over time, as his body adjusts to the meds, he will be able to sit still and pay attention and follow-through on assigned tasks. In the meantime, we're also going through a complete re-eval with the school system to identify what has changed since he was first seen and identify other areas of need. Given the number and substance of the concerns within the classroom, there's no way right now, that he's ready for Kindergarten, and YET, ironically, academically, he's ahead of his peers. He is reading on a 3rd or 4th grade level, but he also can't remember to pull his pants up when he exits the bathroom. He can memorize entire books and songs after reading or hearing them one or two times, but instructions have to be repeated OVER and OVER and given in small chunks. I know he has Aspergers and I don't care. We may not have a professional diagnosis yet, but all the signs are there. He is amazing and he is my son. And I love ALL of him...even the parts that sometimes make me crazy. But right now I'm on a mission: HOW ARE WE GOING TO GET THROUGH KINDERGARTEN?!?
So pray for us, if you would, for wisdom, for discernment, for peace in our decision making, and for Brayden to be under EXCELLENT care wherever he goes to school. Already we are so blessed to work with a team of people within the school system who care for him and want him to succeed!!
Happy 2014!! May you sense the nearness and sweet presence of God in this new year!!
Saturday, November 3, 2012
november already??
wow! my intentions of being a more dedicated blogger are not going so well. actually, the intentions are going great; it's the follow-through i'm struggling with! it has been a busy, routine-interrupted, struggle-to-find-contentment-amidst-the-madness kind of fall. i have been desperate for sleep, peace, heaven really. my migraines have increased with stress and i've been more readily aware of my need for Jesus as i long to relax and have my anxieties calmed.
brayden's test results from early september finally came back! we sort of knew what to expect and sort of didn't!! in the immediate weeks that followed his testing, i'd gone to the library and checked out a stack of books on auditory processing disorder, autism, asperger's, asperger's undetected, "curing" autism, etc... i could see brayden all over some of the pages but then for the next 50 pages, the content didn't seem to relate at all. he'd do something at home to "wow" me and i'd think, "okay, i'm overreacting." in the meantime, we went back to the neurologist for a follow-up and saw a seizure specialist. i'd read that febrile seizures are 30% more likely in children with autism than not. well, HELLO!! he's had 7! i honestly was not too impressed with the seizure doc. chris didn't share my opinion, but i felt like he treated b's case very casually. idk...
we met with the team of specialists at the school last wed, oct. 31st to discuss his testing results and any plan of action. turns out, he scored low to below average in several areas. i wasn't ready to hear that. he did score borderline for asperger's, which means traits could manifest as he gets older, thus tipping the scale, or not. they said his case seemed "complex" in the broad sense bc there was so much going on with him, but right now what is definitive, what can be pinpointed are the deficits in speech and language. 1) there are some articulation issues that need correction; 2) he tends to his language to gather information and share that info with others, as opposed to conversational speech and social engagement; 3) he demonstrates very rigid thinking and low receptive language skills (ability to understand and correctly interpret what is being said). this is where i absolutely hit my head against the wall!! sometimes he understands and others i'm not so sure. the tantrums are louder and he is becoming more defiant and idk if that is because he doesn't understand me or he's just stuck in wanting things a certain way (rigid thinking!) it can make me crazy!! BUT---praise JESUS that somehow his grace is sufficient. i have struggled deeply with anger and in some ways, have been shocked at how awful i can be when i feel so pressed. truly being a mom is the hardest task! the plan is for bray to begin speech and language therapy 2x/wk, beginning this Mon. the goal right now is to have him ready for Kindergarten!! i could not be more thankful that we have had all of these services for FREE through the school system and am grateful that we are in a GREAT school disctrict!! that is such a gift!!
miss n is everywhere and into EVERYthing...she's had back to back ear infections, which is so fun for all parties involved. but she is such a delight...she is quite the terror to her brother though! she knows just how to push his buttons and instigates a full-on fight. i used to step in, but now sometimes i just let them handle it. she's a fighter!! a cute fighter :) she can talk like crazy! says: i don't know, uh-oh, mama, dada, oh wow!, welcome, bye-bye, ball, bayen (brayden), and a couple of other things i can't think of right now. we've said this for awhile, but i'm going to have my hands FULL with her. i have a feeling she'll be like her mama--her mouth will get her in trouble.
thanks for reading...i'd love to know you've "been here" so leave a comment and i'll write you back!
"but the fruit of the spirit is love, joy, peace, patience, kindness, goodness, gentleness, faithfulness, and self-control. against such there is no law." gal.5:22-23
Thursday, September 6, 2012
round 2, check!
normally i like to write when i feel chipper, have plenty of energy, can think straight, make decent word choice, etc... tonight i possess none of those. my throat is suddenly scratchy beyond belief, my ears are beginning to hurt as i struggle to swallow, my head hurts from the emotion and concentration of the day, and i'm just tired in general. good combo, huh? i also didn't want this to be my 1st post back since i obviously took a little hiatus from the blogging world since may, but forget that, here it is!
today went really well!! sweet bray is a little charmer with his winning smile and "please" and "thank-you's." he had never had his hearing screened, so they did that first and passed with flying colors; no problems hearing! darn! i was actually secretly hoping that maybe of his speech issues were connected to hearing. oh well. he then worked with a physical therapist and had a great time with her. what 3 year old boy doesn't like to move, jump, and throw balls! he scored above average to average in pt. then the ot came in and she worked with him primarily with his fine motor skills. he seemed to do well in some areas and not so well in others, but no big deal, just gave us a few tips to help him sharpen those skills at home. he liked her too bc he likes to draw and do things with his hands. then came speech...and this was the moment we were waiting for. it is (to me) the irony of ironies bc while bray is beginning to read, can spell from memory a list of sight words, including his own name, mom, dad, and neely, he struggles to process what someone else is saying. this is textbook hyperlexia (IF in fact he has that!) bc of the obsession with letters and abnormal ability to read at an early age, BUT the inability to understand the spoken word. while he scored average or above average on both pt and ot, his scores in speech were a mixed review (high in one category and low in another). he is highly verbal, has a huge vocabulary, and likes to show off all that he knows, but is clearly struggling with the auditory processing component... meaning, he is in his own world of information and has a hard time answering direct questions, following instructions and transferring information to a different context. when the speech path asked him out of 3 pictures shown, which boy was dry, he said "a towel." and when she asked him to point to the animals that matched, he was more interested in labeling the animals, saying what letter it started with, and counting them. it was hard to sit and hear him do good work, but just not answer the question!! for now, he's def been rec for speech therapy, but they would like to have a better overall picture of what's going on bc of the gap between the 2 speech scores. again we were told that he probably has a very high IQ, so that is next on the docket. we will return on monday for round 3 to complete an IQ test, a sensory profile, and an asperger's questionnaire.
i felt like today's exam was as thorough as an initial exam/screening could be and i am just grateful that the county offers these services for FREE and am hopeful that with the right tools, we will see some marked improvement!! but i also left feeling sad, a little discouraged, and confused. it's so strange to me that a child could be so bright, could be reading of all things, and yet there seems to be a block when i am speaking to him. at the same time though, i am so glad they saw today exactly what we see at home bc it can be maddening on a daily basis. there are moments when i honestly feel like i am beating my head against a wall. i want to scream, "LISTEN!!", but i can tell that somehow he's just not getting it. he gets a thought in his head and cannot process that he may have to "wait a minute" or "go downstairs" or whatever the case may be, and often throws a fit if your plan doesn't align with his. now i know some of that is toddler, but there is something different about it...you can see in his face that it's not translating. i'm honestly shocked that we got him potty trained. that is clearly the Lord...o thank you sweet Jesus for that gift!!!
as for school, i can see how this type of behavior or interaction would be a disruption and be upsetting for a teacher in a classroom environment; however, the solution was not to hold him back in the 2's again. he's beyond that! in the meantime, i am trusting that he's where he is supposed to be and will have a good experience. i need to make a follow-up appt with the neuro since he's now had 7, oh yes, 7 febrile seizures!!! they say there's no permanent or long-term damage to the brain, but we saw a marked regression in bray after his last seizure in june. won't it be nice when we go HOME?
today went really well!! sweet bray is a little charmer with his winning smile and "please" and "thank-you's." he had never had his hearing screened, so they did that first and passed with flying colors; no problems hearing! darn! i was actually secretly hoping that maybe of his speech issues were connected to hearing. oh well. he then worked with a physical therapist and had a great time with her. what 3 year old boy doesn't like to move, jump, and throw balls! he scored above average to average in pt. then the ot came in and she worked with him primarily with his fine motor skills. he seemed to do well in some areas and not so well in others, but no big deal, just gave us a few tips to help him sharpen those skills at home. he liked her too bc he likes to draw and do things with his hands. then came speech...and this was the moment we were waiting for. it is (to me) the irony of ironies bc while bray is beginning to read, can spell from memory a list of sight words, including his own name, mom, dad, and neely, he struggles to process what someone else is saying. this is textbook hyperlexia (IF in fact he has that!) bc of the obsession with letters and abnormal ability to read at an early age, BUT the inability to understand the spoken word. while he scored average or above average on both pt and ot, his scores in speech were a mixed review (high in one category and low in another). he is highly verbal, has a huge vocabulary, and likes to show off all that he knows, but is clearly struggling with the auditory processing component... meaning, he is in his own world of information and has a hard time answering direct questions, following instructions and transferring information to a different context. when the speech path asked him out of 3 pictures shown, which boy was dry, he said "a towel." and when she asked him to point to the animals that matched, he was more interested in labeling the animals, saying what letter it started with, and counting them. it was hard to sit and hear him do good work, but just not answer the question!! for now, he's def been rec for speech therapy, but they would like to have a better overall picture of what's going on bc of the gap between the 2 speech scores. again we were told that he probably has a very high IQ, so that is next on the docket. we will return on monday for round 3 to complete an IQ test, a sensory profile, and an asperger's questionnaire.
i felt like today's exam was as thorough as an initial exam/screening could be and i am just grateful that the county offers these services for FREE and am hopeful that with the right tools, we will see some marked improvement!! but i also left feeling sad, a little discouraged, and confused. it's so strange to me that a child could be so bright, could be reading of all things, and yet there seems to be a block when i am speaking to him. at the same time though, i am so glad they saw today exactly what we see at home bc it can be maddening on a daily basis. there are moments when i honestly feel like i am beating my head against a wall. i want to scream, "LISTEN!!", but i can tell that somehow he's just not getting it. he gets a thought in his head and cannot process that he may have to "wait a minute" or "go downstairs" or whatever the case may be, and often throws a fit if your plan doesn't align with his. now i know some of that is toddler, but there is something different about it...you can see in his face that it's not translating. i'm honestly shocked that we got him potty trained. that is clearly the Lord...o thank you sweet Jesus for that gift!!!
as for school, i can see how this type of behavior or interaction would be a disruption and be upsetting for a teacher in a classroom environment; however, the solution was not to hold him back in the 2's again. he's beyond that! in the meantime, i am trusting that he's where he is supposed to be and will have a good experience. i need to make a follow-up appt with the neuro since he's now had 7, oh yes, 7 febrile seizures!!! they say there's no permanent or long-term damage to the brain, but we saw a marked regression in bray after his last seizure in june. won't it be nice when we go HOME?
Monday, May 21, 2012
round 1
well, leave it to me to enroll my child in an over-achieving pre-school! i woke up this morning with a nervous stomach and was anxious about how this morning's evaluation would go, but really, i knew brayden would waltz right in, give a big smile and win the room with his sweet demeanor. AND HE DID! before i get into the evalutation i want to share this: ironically, in the past 1-2 weeks he has not been singing or reciting the abc's quite as frequently as before. rather, he's been SPELLING words out of the clear blue (mom, dad, neely, brayden, stop, cat, hat, etc...), rearranging letters to make words (sight words mostly), and sounding words out when reading...yes! reading! he is totally beginning to read! and each time we read to him, he stops us mid-sentence and says "what's that say? what's that say?" very into words... i'm beginning to think he has a photographic memory because he has practically memorized 3 books, 2 of which are dr. seuss, and is now into puzzles...interlocking kind. he has a few that are 12-24 pieces and has aced those, so i bought him a 48 piece wooden interlocking (jigsaw) puzzle at target the other day with no guide. he's already aced it, no problem and looks at me like "now what?" his speech has improved in that he is saying things he hasn't said before, such as "good idea, mom" when I suggested popcorn as a snack the other day, but is still communicating mostly in 3-4 word phrases, not quite full sentences.
on to the evaluation: could not have gone better! honestly! we are just so, so grateful they were willing to squeeze us in!! we were present in the room the whole time. brayden did some activities and interacted with a speech pathologist while chris and i talked with the head of pre-school services for the county. while they are professionals, they are not doctors and there was not a school psychologist there, so no official diagnosis has been made, but they did give us their thoughts and initial impressions and make a referral for a full evaluation to be done in august. by their interaction with him they did not think we were dealing with autism or asperger's, although some of our verbalized concerns would signal red flags in that direction. they did mention hyperlexia, which some believe falls on the autism spectrum. Hyperlexia is basically "an above normal ability to read, coupled with a below normal ability to understand spoken language" (autism key.com). it is also associated with a fascination with either letters or numbers and learning to speak by either rote memorization or heavy repitition. both kristi and julie commented though, that they do think he's "truly brilliant," but that there is a speech barrier (typically with asperger's there is no communication barrier.) he either knows what he wants to say and can't get it out or doesn't have the words at all. personally, i think this is why he has resorted to singing to abc's, because it's comforting and yields praise and confidence. the communication block creates both social and emotional frustration. they want to run both an IQ and a verbal/spacial capacity test on him, thinking both are very high. they did recommend speech therapy, but in order to have the official order for speech therapy services, he needs to go through the full evaluation in august. speech therapy would be 2x a week at our local elementary school on the days he's not in pre-school. when asked about pre-school for next year, i wanted to make sure we were not going to be a part of any of their programs and she assured me definitely not, that he was too high-functioning. she did, however, let me know that the school where he's been attending has a reputation for setting standards that are above and beyond the normal range of development for pre-school children. awesome! leave it to me to set high goals for my children! so she gave us some names of pre-schools that incorporate more play-time into their schedules while providing a stimulating, challenging atmosphere. above all, he needs to be in a place where he can THRIVE and where he feels comfortable and can grow and be himself!! and where mama can feel confident about the care he's getting!!
thank you, thank you for your prayers!!!! we are already filling out paperwork for the august evaluation so we are not put on a waiting list. then i will be researching which pre-school to enroll him in..fun, fun! we will keep you posted, but for now, we will rest and enjoy today's goodness, knowing that he is created in the very image of God and he is our precious, wonderful son. we are blessed to be his parents!
on to the evaluation: could not have gone better! honestly! we are just so, so grateful they were willing to squeeze us in!! we were present in the room the whole time. brayden did some activities and interacted with a speech pathologist while chris and i talked with the head of pre-school services for the county. while they are professionals, they are not doctors and there was not a school psychologist there, so no official diagnosis has been made, but they did give us their thoughts and initial impressions and make a referral for a full evaluation to be done in august. by their interaction with him they did not think we were dealing with autism or asperger's, although some of our verbalized concerns would signal red flags in that direction. they did mention hyperlexia, which some believe falls on the autism spectrum. Hyperlexia is basically "an above normal ability to read, coupled with a below normal ability to understand spoken language" (autism key.com). it is also associated with a fascination with either letters or numbers and learning to speak by either rote memorization or heavy repitition. both kristi and julie commented though, that they do think he's "truly brilliant," but that there is a speech barrier (typically with asperger's there is no communication barrier.) he either knows what he wants to say and can't get it out or doesn't have the words at all. personally, i think this is why he has resorted to singing to abc's, because it's comforting and yields praise and confidence. the communication block creates both social and emotional frustration. they want to run both an IQ and a verbal/spacial capacity test on him, thinking both are very high. they did recommend speech therapy, but in order to have the official order for speech therapy services, he needs to go through the full evaluation in august. speech therapy would be 2x a week at our local elementary school on the days he's not in pre-school. when asked about pre-school for next year, i wanted to make sure we were not going to be a part of any of their programs and she assured me definitely not, that he was too high-functioning. she did, however, let me know that the school where he's been attending has a reputation for setting standards that are above and beyond the normal range of development for pre-school children. awesome! leave it to me to set high goals for my children! so she gave us some names of pre-schools that incorporate more play-time into their schedules while providing a stimulating, challenging atmosphere. above all, he needs to be in a place where he can THRIVE and where he feels comfortable and can grow and be himself!! and where mama can feel confident about the care he's getting!!
thank you, thank you for your prayers!!!! we are already filling out paperwork for the august evaluation so we are not put on a waiting list. then i will be researching which pre-school to enroll him in..fun, fun! we will keep you posted, but for now, we will rest and enjoy today's goodness, knowing that he is created in the very image of God and he is our precious, wonderful son. we are blessed to be his parents!
Thursday, May 10, 2012
peace
yesterday at his school we had Muffins with Mom to celebrate mother's day. i was so thrilled to see him smile and greet me with a hug and kiss. in the past when i've walked into his classroom, though excited, he typically bursts into tears and it's always bothered me on some level because i couldn't understand why this would be his response when he ought to be glad to see me. if in fact he has asperger's or highly functioning autism, as it seems many of his symptoms would indicate, this would explain the odd reaction. he is easily overwhelmed emotionally and is unable to control his emotions, which is why we see the outbursts of tears, hitting, throwing, etc... recently these outbursts have become greater both in frequency and intensity and it is so tiring. sometimes the smallest tasks are a struggle. for now, we just don't know exactly HOW to deal with him because we don't know exactly WHAT we're dealing with. the evaluation on the 21st could not come soon enough! according to my friend, even though it will be good to get an educational perspective from the County about where he is in his development, it is up the medical professionals to provide an actual diagnosis if one is to be made. i can't get a referral for a developmental pediatrician though (which i've heard are hard to get into!) until after his 3 year well-check (early june). one step at a time.
i am EASILY overwhelmed by the newness of all of this, the tantrums, what feels/seems like the refusal to listen or obey commands (when really we don't know what's going on in that little brain!), the uncertainty of the future, the demand it may place on me/us, the desire for him to be.. not "normal" per se, because i want him to be all that God has created him to be, but i want him to be socially acceptable and to have friends and be able to carry a normal conversation, etc... i just find myself worrying A LOT! and that is why i am desperately in need of God's peace. and i find myself constantly asking "why does everything in life have to be hard?" but that is the wrong question. everything in THIS life IS hard because it's broken, but everything in the next life is PERFECT. i love reading Jesus Calling each morning. that and my coffee give me strength for the day. is that okay to say? it speaks directly to me every morning. this is today's message and i wanted to share it here:
"Do not resist or run from the difficulties in your life. These problems are not random mistakes; they are hand-tailored blessings desgined for your benefit and growth. Embrace all the circumstances that I allow in your life, trusting me to bring good out of them. View problems as opportunities to rely more fully on me.
When you start to feel stressed, let those feelings alert you to your need for me. Thus, your needs become doorways to deep dependence on me and increasing intimacy between us. Although self-sufficiency is acclaimed in the world, reliance on me produces abundant living in my kingdom. Thank me for the difficulties in your life since they provide protection from the idolatry of self-reliance."
LOVE this sweet boy!!
Saturday, May 5, 2012
surrender
my big boy bray is almost 3...hard to believe!! we are so proud of the little boy he is and has become...kind, curious, compassionate, gentle, has a smile that lights up a room, and a real love and interest in the company of others. at the same time, he is a toddler and is ALL BOY and can certainly be belligerent, rough, lack patience, throw, hit, and send us over the edge with his tantrums when he doesn't get his way.
lately chris and i have been concerned with his ever-increasing obsession with the alphabet. he literally does abc's ALL DAY LONG...so much so that it seriously drives me crazy. it is not cute anymore. i hate to sound so crude, but he has known the alphabet since he was about 18 months and could recite the whole thing, as well as his shapes, colors, and numbers when he entered 2 yr old pre-school this year. there is something about the alphabet that he is attracted to...he sings it, he recites it, he lays the letters out IN A STRAIGHT LINE, he inquires as to the whereabouts of a letter if it's missing, he goes to bed with letters, you get the picture. to curb this "appetite" we have been trying to redirect and show him how letters go together to make words (he knows hundreds of words) and help him sound words out. he loves this and is making definite progress in this direction, (which is awesome for reading!) but still ABC's are ALL i hear!
well this week i had an end-of-the-year conference with his teacher that actually i declined because they're optional, but she stopped me in the carpool line to request it, stating she had "some concerns about his moving up to the 3's class next year." honestly i was dumbfounded. other than not being fully potty-trained, i could not think of why he would not move up. i was made aware earlier in the year that he was the youngest in his class and on occasion it showed. i had noticed the few times i'd been there for class functions that he seemed a little emotionally immature compared to the other, but..."every child develops differently and boys tend to lag behind," right??!! after being nervous all weekend about what concerns there might be, i met with his teacher on wednesday. i felt like a bombshell had been dropped on me. i'm so glad neely was there for me to look at because she kept me smiling while on the inside i was about to lose it. we'd gone from "no concerns, everything's great" in november to a list of about 10-12 concerns in may! academically, he's ahead, but in almost every other area he's apparently behind. speech--puts 4-5 words together for sentences; other kids talking in paragragh form, telling stories; dexterity--refuses to hold a pencil, throws it across the room; also refuses to hold scissors, so still cannot cut or manipulate this motion, when others have mastered the skill; social/play time--little to no interest in playing with others; plays mostly by himself while others have not only moved on from side-by-side play, but are playing WITH each other and doing things in groups; does not interact with others at lunchtime, eats his lunch while talks to himself or sings ABC's! PE--similar to social/play time, only while others are learning to play in two's or as a team (relay races), bray has been spinning in a circle or crawling across the bball court "like a snake." it was her lunchtime story that broke my heart and i began to cry...she said the other kids are busy talking to each other and he just sits there! that makes me so sad bc i know he loves other children and he's not shy, so i don't know why this is happening or what is going on. anyway, she suggested for us to have him evaluated and recommended that we hold him back and have him repeat the 2's next year. well, i am a definite advocate for early intervention, so if there is something going on with him developmentally, we certainly want to identify it and attact it EARLY, but i am not a fan of repeating the 2's. academically he would go nuts!! right now he could list 10 words that begin with each letter of the alphabet.
SO....where do we go from here? thanks to another friend who unfortunately has experienced similar concerns, i sort of knew some of my options. after speaking with my pediatrician, we basically had 3 routes to take: go through our neurologist (because of Bray's history of seizures), contact an occupational therapist (private practice--$$), or go the county school board route. for now, we are going the public school route. they offer FREE developmental screenings for children ages 3-5 prior to Kindergarten in order to assess whether they qualify for services, identify which services, and then fully service these children to ready them for a general ed classroom when it's time for Kindergarten. (btw, sorry this post is sooo long!) chris and i both contacted the lady in charge of this program in hopes we could get bray screened on friday (yesterday) since it was the LAST screening of the year! she did call back (praise GOD!!) there were no time slots available, but she was so nice and compassionate and said even though it is a crazy time of year, she would make a special arrangement for us. you can be praying for us on monday, may 21st at 9am---he will be screened then with a speech-language pathologist, an occupational therapist, the head of the Special Education dept and this woman, Kristi Quinn, head of pre-school services. i am SOOO grateful!! please pray for this time and for the evaluation, that it would be an honest portrayal of what would typically be seen if Bray were in the classroom. pray also that we would get some answers and know where to go from here, how to best serve/love him and care for him as parents and educators. we surrender our fears and our child to Jesus, knowing bray is fearfully and wonderfully made and our wonderful Lord has an awesome plan for his precious little life! whew...
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