Slighted Siblings

So many of my friends are just now having their children or adding to their family. Thinking back to the bundle of joy that I brought home as an addition to my family. An 8 year old boy was eagerly anticipating the arrive of his baby brother. Which got me thinking of today's topic of my blog. Siblings of a special needs child. Now straight away there was no cause for any inkling that he was going to be a special needs child and you are dealing with normal sibling rivalry. I will not tell you that there is a special exception because there's 8 years in between the two; there have been plenty of fights as if there were two two-year olds in the house. I often wonder if all the things that I have done over the years to ensure that he feels no different from anyone else did I some how slight my other child. There were many things put into place and many allowances made. I have friends who have special needs children too and sometimes you hear "oh, well that's just what we do." or "that's "Joe" for you." Not that anyone ever really complained or said something but sometimes you can almost see the look on their faces that they feel like they are not getting enough. Sure they don't blame you (or they do and never really say anything) and they definitely do not blame their sibling (secretly they do but then feel regret because after all it really isn't something that can be help or prevented) but you can still "sense" that something is off. Or maybe it is not "off" because of their actions but it is something that you feel. I have seen some kids say that they wished they didn't have "Joe" or "Jane" as a sibling because they got all the attention. Too many problems that always needed to be fixed. I know my oldest felt that his brother could do anything and get away with it~ especially when he was angry. "You always blame his moods and you never do anything!" That would be the statement echoed for many months if not a year or two. It's not that you didn't want to discipline bad behavior you just had to discipline it differently. Which was not understood by a 10 year old. And if I could be honest with my oldest who was a child with ADHD (hyper is putting it mildly)had many allowance made for him as well.Could you have found a way to do things differently? Found more time to spend with them? Being a single parent (limited income should be implied) with a special needs child; I am not really sure how I could have made more time in my day? Or find a way to have spent a special one on one day with my eldest. We were already cramming doctor appointments, dental appointments, medication therapy appointments, physical therapy appointments, occupational therapy appointments, school meetings, IEP/504 Plan meetings,social activities as a family and little leagues. I guess when I pondered on this topic my own feeling of inadequacy came into play. Did I do enough? Not sure. Not even remotely sure. But my eldest is a fine young man, who is serving in our military and well the child that spawned this blog is slowly shaping up to becoming a decent young man who is completely different from the child that you have read about. All the hard work that we have done over the years. Sure it is worth it but could I have done more for my oldest? That will forever be the burning question (and not sure I will ever ask). Trying to live a life that is not full of regrets especially when it comes to you children is extremely hard to achieve.

Birthday Parties

The first year we decide to have a birthday party for him it went off without a hitch as it was just a small gathering of a few of his favorite classmates and a girl he adored. The party lasted about 2 hours. He was a little bit annoyed when his friends were blowing the birthday horns but he kinda just laughed it off. In the video of the party you can see him covering his ears and looking his friends like they are just crazy for being so noisy. We are able to distract his by asking him to make a wish and blow out the candles. Next year he asked to have another birthday party and invite his friends from school. The tides had changed a bit so we weren't sure who to invite and sent out invitation for him to hand out in class. Kids showed up who weren't invited (neighborhood kids looking to score birthday cake and a hotdog). No worries he though it was cool to have so many "friends" at his party. But then the "rain clouds" move in for no reason what so ever. His mood changed and he doesn't want to interact with anyone. He sits off by himself. You ask what's the matter. "I don't know". His favorite answer; if he answers at all. We would have one more birthday party before we finally call it quits on parties. The same thing happened just like last year. I actually have a picture of him standing in front of his birthday cake with his arms folded across his chest in protest but blowing out the candles anyway. It is funny to look back on photos like that and just laugh. But at the time you wonder what in the world is blowing through his mind. What, if anything, is the matter. You are having a birthday party. Friends are here and you have the birthday cake of your dreams. No amount of cheer can make the "rain clouds" go away. Over the years there would be no more birthday parties. He would want a cake for himself and maybe to share with a friend or two who just happen to wander over to the house. No fanfare, no fuss. It was kind of sad not to plan birthday parties for him the way I planned birthday parties for my oldest. I have a couple birthday pictures of him and his cake. Last year for his birthday he didn't want any cake at all. No nothing. That was odd. Even when I bought a cake anyway he didn't even want to blow out the candles. He ate the cake and that was about it. This birthday will be his 16th. Have no clue as to what if anything he wants to do. Now on the flipside........ he never got invited to any of his classmates birthday parties. I cannot recall one invite. Sure he had friends in class but there were problems during the school day and I couldn't help but to think that because of his behaviors he never got an invite. It didn't seem to bother him or at least he never said anything about it. I could wonder though, if he got a few invites but didn't say anything about wanting to go because it would be uncomfortable for him. We hear stories all the time from other parents of special needs children that birthday parties are a horror show. We even see Facebook post from parents who post about no one showing up to their child's birthday party (which is completely heartbreaking). He has been lucky in that respect; he has had friends over the years who accept him for who he is. They don't poke fun or distance themselves when there's a problem or goes "radio silent" (which can happen quiet often). I can reflect on the fact that it has been odd not to be able to plan birthday parties, no birthday balloons, party games and gathering of friends~you know the thing some parents thrive for. But on the flip side there were no problems with noise or other kids running around and no problems with everyone getting the exact size piece of cake {especially not eating the piece with your name on it}. No problems, just peace and quiet.

Quirks & Ticks

Large crowds....he hates large crowds. Decided to take him to see Clifford the Big Red Dog who is having a show at our local mall. He loves Clifford. He will put on a show and he will be able to meet Clifford. There will be activities for children his age and their will be face painting and happiness abound. Or so you think. You know how some kids love Santa but don't want to meet him in person and they cry or scream when you scoot them onto Santa's lap? That wasn't the issue with Clifford. He really wanted to meet Clifford. What ruined the experience? People ruined the experience. Other children who were loud ruined the experience. Children running around ruined the experience. Yes, it is all normal. Nothing wrong with kids running around having a great time with the activities that were planned for this event. Getting your face painted and squealing with delight when look into the mirror. You know happy 2-4 year olds waiting for Clifford. However when you are sensitive to sounds, large crowds and chaos an event of this magnitude can be a total nightmare. It was our first outing of this nature and it would be our last. I tried to engage him in some of the activities that were going on without actually engaging with the other children. His older brother was there. The were those Little Tykes cars for the kids to be pushed in and little bowling games for kids to play by themselves if they wanted to. All he focused on and was quite unhappy about was the noise the other kids were making. He was not happy at all. In fact the pictures that I have of the event show a very unhappy child. I recall one picture so vividly and that is a picture of his brother pushing him in the Little Tykes car and you can clearly see that he has been crying and is distraught. Another picture shows his older brother trying to engage him in an activity and he clearly isn't having it. He cried several times and we left the activities area and went looking around the mall for a few. He was happy in his stroller as if it actually provided some form of solitude. At least we were away from all the noise and chaos. He shook his head yes when I asked him if he wanted to stay and still see Clifford. We would stay for the show but the day was so overwhelming for him as soon as Clifford came out he laid back in his stroller and fell asleep. Large crowds and chaos would prove to be a trigger for him in different settings. Didn't have to worry about him wanting to go to the local carnival or to an amusement park. Going to the zoo was ok because we went on weekdays and not the weekend. Some things had to be a certain way. He was a creature of habit. In the morning he watched Sesame Street's Journey to Ernie and Elmo's World but would not finish watching the rest of Sesame Street. Then you changed the it to Disney Channel so he could watch Out Of the Box (Disney needs to bring that back-seriously). Luckily after Out of the Box, it was time for him to go to school. It would be during the second year of Preschool that he would have the summer off as they felt that he would not regress during summer break in which the TV had to be on Disney Channel. If there were no mouse ears at the bottom of the TV screen he would have a melt down. Some of the shows that came on in the afternoon were not geared to the preschooler. The VCR and DVD player came in very handy as we recorded a lot of Journey to Ernie, Elmo's World and Out Of the Box to simulate his regular morning TV viewing. As long as there were mouse ears on the TV he was a happy camper. It was hard explaining to him that Out of the Box was no longer on TV, luckily he was fascinate with Blues Clues to accept the change. Eating was another issue. When he was a baby he loved all the fruits that were introduced to him. Pears & Peaches would disappear from the menu once he started developing sensory issues. He loved pears, nothing was wrong with the flavor but it was the "grainy" texture. Sand he said. Pears feel like sand. (Yes a toddler knows what sand in the mouth feels like). Peaches, same thing he loved the way peaches taste but to stringy he said as pulled peach strings from his mouth. Homemade hamburgers? Nope too bumpy, not flat like McDonald's (don't laugh). There were all kinds of food dos and don't. Food could not touch each other. No mixing foods. Brushing teeth would also prove to be problematic. We tried all kinds of tooth brushes. Soft, medium and yes, even hard. Nope. Spin brushes were a no go as well. You pretty much had to hold him down to bush his teeth. Barking dogs and other loud noises = chaos. He wanted no part of anything loud. All these things were not really inconvenient they were almost second nature. It became second nature. It kept peace. And for this part of the roller coaster, we wanted peace. So I became peace. For him.

Welcome to Preschool~Special Education Edition

At 2 1/2 we would be lucky to have him enrolled in Preschool. Luckily the school system has an Early Childhood Special Education Program {which delivers services to preschool aged children (2 1/2 to age 5)who experiences a disability and requires special education services. Educators, along with the child's family develop an IEP (Individualized Education Program) with goals and objective to meet the child's developmental needs. The goals and objectives include variety of skills and/or activities for the child to learn and use consistently. The long term goal for preschool aged children is for them to be as ready as possible to enter kindergarten. The earlier services are provided for children with disabilities, the better the long term prognosis. Children with special needs who have experienced support early in life do better in future settings.} that is being offered to us. This is a public school setting so all the services are free of charge. Our first step is to formulate an IEP for him. Seems simple enough, at this point he is still being diagnosed as developmentally delayed and speech this time around is the main objective. He will receive a certain number of hours of therapy in addition to instruction in the "classroom". The goals and objectives are pretty straight forward and we all are looking forward to having him meet the goals within the time frame set forth in the IEP. Well then we hit a snag........he doesn't want to cooperate. He is placed in a classroom with other children who have a variety of special needs. He needs constant instruction, constant attention and when he doesn't have it a wicked temper tantrum rears its ugly head. They chalk it up to him being 2 and never been away from his parent. We manage to work on some of the goals in the IEP. As the year goes on it gets pretty interesting. He becomes more inventive with getting attention. There is this little girl in his classroom and she is in a wheelchair. She is one of his friends, he decides though that he now cannot walk and needs a wheelchair. Here is this little boy who is only 2 1/2 and is trying to convince his teacher that he cannot walk. It was quite maddening at first. Just how much attention could one little boy need? At home he got attention. At school he was receiving as much attention as he could. We set up another IEP meeting to discuss what was going on. The solution was to (next school year)place him in an Inclusion Classroom (an inclusion classroom is where there is a mix of special education students and general education students)this way he will have the opportunity to model a general education student vs. modeling after a special needs student. In the meantime they would have him assist his friend in the wheelchair by being her helper. By becoming her "assistant" it gave him the opportunity to receive the attention that he needed not only from the teachers and therapists but from his friends as well. He became a super helper to at least 2 classmates. He had a job, he had purpose. As much purpose as a 2 1/2 year old can have. It was important to him to help his friends. Since he exhibited signs or regression during Spring Break it was decided that he would attend school year round. No summer break for him, which would be a good thing for him to continue the goals of the IEP throughout the summer. He was still reserved, still quiet and some days little black rain clouds would loom overhead for no reason but just to be there and make his day awkward and awful. Nothing in particular would be wrong but things would just feel wrong. We had little faces that we put up on the wall at home to tell us what he was feeling when he woke up. He couldn't choose. You would ask if you are happy? No he would say. Are you sad? No he would say. Are you angry? No he would say. He would always see to choose the OK face. I made sure that he was put on the school bus in a good mood to help insure that he arrived at school in a good mood which helped to make sure that he would have a good day at school. If he was in a mood, then his day at school would be a difficult one. He had routine and if you broke routine it would have dire consequences (which was another reason to extend his school year). He was a creature of habit and certain things had to be a certain way. The first year of preschool proved to have a different roller coaster ride all of its own. Buckle up.....it's not over yet. For additional information on the Virginia Early Childhood Special Education Program please visit this website for more information http://www.doe.virginia.gov/special_ed/early_childhood/index.shtml

Adventures in Child Development Programs

Referrals in tow we have a meeting to discuss the problems that we may be having with walking, talking and socialization. Yep, they want your baby to be social. You should be able to hand little Johnny off to complete strangers without so much as a peep from him. Ha! Well okay might be exaggerating a bit but they still want your child to be social. Not my son. He has always been guarded. Family couldn't even hold him. I always assumed it was a good thing. As far as him not even trying to walk yet. Who cares? My oldest started to pull himself up on furniture at 4 1/2 months and he was walking on his own at 7 months. All children progress differently. Talking? Sure it was difficult to communicate with him but I was ok with him not talking. He was quiet, reserved and content most of the time. Until he had tantrums. Tantrums from hell. But then again every child is different and I couldn't really see what the issues would really be. But when you get a referral from your doctor you must go see what the problem is. So I sit down with a counselor at my local Community Services Board Infant & Child Development Program to discuss what might be going on. We have to design a IFSP (Individualized Family Services Plan) and he has been labeled Developmentally Delayed (lacking several gross motor skill, several fine motor skills and is in need of physical & occupational therapy). The IFSP clearly states that he must attend physical therapy at least twice a week, occupational therapy once per week and speech therapy will be included a little further down the road but is given instruction on how to try to coax him into speech. If we are not able to "catch him up" by the time he is 2 1/2 then he maybe enrolled in a Special Education Services through our local school system; they have a separate preschool designed to meet the needs of children. Physical therapy was ok, nothing to it really but teaching him how to fine tune his walking skills, (by the time we had finished all the paper work, referral and finalized the IFSP he was walking independently but still required the physical therapy) walking up steps, kicking a ball all gross motor skills a child his age should have had but didn't. Working on his fine motor skill was a cake walk too. Occupational therapy would prove to be the kicker. He didn't want anyone to touch him at all. The more you tried the worse he was. Different workers would come into the room and grab on him and touch him. It was a complete nightmare. He wasn't having it all. The tantrum. Oh, the tantrums. Nobody seemed to mind them though. It was part of the process though. He needed to get use to people being in his "personal bubble space". Many people would enter into his "personal bubble space" that was just a part of life they said. I am pretty sure it was completely overwhelming for him to go through. He speech was still not up to par and all he did was scream "No!" He was not a happy camper. We had to scale back the therapy sessions and try an new approach. Speech therapy has also started. Speech would also prove to be a good way to casually incorporate some occupational. There soon would be a new approach all together as he just celebrated his 2nd Birthday. Only 6 more month to go until we could enroll him in to the preschool. I was actually excited that he hadn't accomplished some of the goals set in his IFSP. I know it sounds odd but going to preschool with other children like him would be a great learning opportunity. Speech therapy had run its course he was talking but there were things wrong with his pronunciation and articulation (and again it wasn't that he couldn't talk, he simply wouldn't but with all the delays he produced himself caused deeper issues). However once he started talking, he never stopped (LOL). He would be well on his way to Preschool in a few months. We had an IFSP meeting to incorporate the Preschool and meet with the school to discuss his enrollment. The IFSP would continue as planned and if needed by the time he would be enrolled in Kindergarten an IEP would take it's place. I was glad that there were things in place to help him and a team of people were there guiding the necessary steps to make sure that he was on the right track. The last year and 1/2 proved to be a preparation for what loomed on the horizon. What you though you were preparing for wasn't the task at hand but on a stepping stone to the solutions that you needed to have in place for what was yet to come.

Adventures in Sign Language

So we are at his well baby check up and the his pediatrician ask is he babbling? Can he say Mama? Dada? Nope. My kid is mute, I joke. We know he can hear so we don't think that anything is seriously wrong with him. She casually says by now he should be saying simple words but you already have a kid so you know the mile stones. Sure, but my oldest was walking at 7 months so I figured with this one I would slow my roll a bit. So we did schedule a hearing test for him and everything was fine. But we were concerned as to why he wasn't saying anything. So we wait a few more months and at his next well baby check up she asks the same questions. I said nope, not a peep. He grunts when he wants things and points and it is exhausting trying to figure out what he wants. She refers to specialist who works with developmentally delayed infants/toddlers. Since he is actually to young for speech therapy, she gives me simple exercises to "teach" him to talk. Now every week I have to go meet with the specialist to mark the progress. No, the boy is still mute. We come up with a more detailed IFSP. Finally old enough for speech therapy (occupational and physical would be added but that is for another time.)and a therapist will visit our home once a week to work on his speech. The main problem isn't that he cannot speak, it's that he won't speak. He just doesn't want to. So add more sign language to the routine. He is quite happy with non-verbal communication. He actually likes that I sign to him. He won't sign back but at least I have some line of communications with him. It is odd how a 19 month old is really running your life. Still no labels yet other than the fact that he is developmentally delayed in speech, gross motor, and lacking some fine motor skills. I couldn't help but to wonder what the problem was. We would continue to have the speech therapist come to the house, he would speak for her, he got comfortable and let it be know that he could say simple words. She was also helping with the occupational therapist by getting him use to people coming in his personal space (which he hated) so since he was getting along it was time to shake things up and introduce him to another speech therapist. The boy turned mute again. So each time he got use to a therapist we had to change therapist. It was a good test for him but with each new therapist he would simply clam up again. So until he wants to talk, I will be using simple sign language to communicate his wants and needs. Looking back it was kind of funny. So stubborn, so determined to have his way.

Adventures in Medication

When I say adventures boy do I mean adventures and then some! You think back to all the testing that has been done over the course of 6-7 months. All the pre-therapy session you went through just to get a diagnosis that no one in the psychiatric community wants to give a child. Bi-Polar Disorder. Pediatric Bi-Polar Disorder. Now that they swallowed that bombshell; what medication options are you looking for? Who knows? I certainly had no clue. Can we stabilize his mood swings? Flash forward to what first prescribed. Abilify. New to the market. Doesn't cause weight gain and different from any prescription for bi-polar disorder. One problem no solid clinical trials on children. So we give it a go. Within a month we changed the dosage and wham!, a full on manic episode in school no less. Back to the drawing board. Next up Risperdal. The nightmare from hell. We would deal with this nightmare for close to 2 years. The main problem was the weight gain. The medication causes weight gain and causes in increased appetite. The weight did not increase slowly at all, it increased very rapidly. He was your average 6 year old boy with a who wore 7/8 boys. Trying to control a child's weight proved to be difficult. By the end of a 6 month period my son was now wearing a size 32 men's (his older brother's clothing). He would be self conscious about his weigh. All the while I am arguing with his meds therapist that he needs to be switched to a different medication. The medication is working they said. But at what cost I asked. The more we talked about it the longer he stayed on the medication. He wasn't happy with himself. Finally, I switched offices and started to see a new meds therapist and I brought up my concerns to her and thankfully she agreed with me and couldn't understand why he was being kept on the Risperdal. She also agreed with me that 1) the medication itself caused weight gain (without the increased appetite) and 2) the medication increased the appetite. They were two separate side affects. {{It would be years later that we would hear all the warnings about Risperdal, being linked to weight gain and Gynecomastia}} Finally a voice of reason. Next up would be Trileptal. Along with Clonidine (to help with sleep, which later would be replaced with Melatonin tablets) and Vyvanse (to help slow the mind down, though he is not being diagnosed with ADHD). This medication would be the protocol for several years. The Trileptal would see several increases to help with the mood swings. There would be "breaks" in medication. I kept his therapist informed as to when he was stopping and the duration of each break. We were testing the waters because ultimately the goal was for him not to be on medication. No one ever said, hey this is an unrealistic goal you have. Not once. We would work on everything that needed to worked on in the short time that I gave it. I wanted things completed before he got to high school. {{{Foot Note: The goal was complete 2 years a head of schedule. It took work but we did make it.}}}