Wednesday, November 24, 2010
We discussed with her all the concerns we had that Joshua's PT had brought up and pretty much as I thought the PT was trying to scare us. The dr seemed perplexed about his legs not growing because he wasn't on his feet enough and she saw no problems in his legs being turned in. So he is healthy, just behind developmentally. I even asked about him seeing an orthopedist and she didn't see any reason for it since she examined him and he looked fine. His ears are clearing up nicely from his ear infection. She said of course we should continue the therapies and work with him at home but agreed that we can't do it all the time. She was pleased to hear that he is now cruising more and can stand up for a few seconds at a time. Overall she was pleased with his progress.
Sunday, November 21, 2010
Wednesday, November 10, 2010
First I want to say I really do appreciate all you have done for and with Joshua but you have to know that not every single one of the suggestions or recommendations you make are possible especially all the time and for the amount of time you want them to be done. I am his mother and I have to live with him and all of your suggestions. Just today I was brought back to the feelings I had when I took him to his physical therapy evaluation almost a year ago and it was very painful for me. I do not think he will like having a pressure suit at all, we have tried it with him and it has made no difference in fact he was worse during OT when it was done. I will try but I make no promises. The same goes for the stander. Of course I want him to walk and to improve but at what cost to me and him? His entire day cannot be therapy, he has to be allowed the same things that other children are allowed, free play time. I understand that you are concerned with his growth and development and appreciate it and of course so am I. Right now he loves speech therapy, it is the one therapy where he is allowed to just play and I will not ruin that for him. If he does not like being in the stander during that therapy and it becomes where he no longer enjoys it then I will not continue it. He has made improvements there and I want that to continue. It is just as important to me that he make improvements in speech as it is in other therapies. So I will try your suggestions and recommendations but in the end I will choose what is best for me and my son, I have to be able to sleep at night and not be miserable and I am right now going through the same emotions I had when he was first evaluated. I do not need to be reminded that he has a long road, of course I know that, but I don't need reminders. I also don't need to know that you thought he would have graduated by now and he hasn't, that hurts and I do not need to know that. I also am not ready to contact other families dealing with the same diagnosis as Joshua. If and when I am ready I will do it on my own. If you want more information about his diagnosis I suggest googling it but it was suggested to me by the genetic counselor that I not do that as it tends to be negative and I do not need any more negativity in my life. Also all children are different and I do not think that just because one child with the same diagnosis did something at one time does not mean Joshua will do the same. I am sorry but I think I have to tell you how I feel as I have to live with myself and Joshua and the suggestions and recommendations you make. I want him to enjoy being at preschool as well and do not think he would like being in his stander. He does pull up all the time and even stands alone for up to 20 seconds at time. You may not have seen him do that but he does it ALL THE TIME at home and even at preschool. Maybe that's not good enough for you but I have to celebrate the things he does and how far he has come and I think those are wonderful.
She came back by the house to install a piece on Joshua's walker and said it was great that he was standing for 20 seconds but that in 12 months (it's only been 10) he's only made 4 months of progress and I said that's better than none and she said if it wasn't for intense therapy he wouldn't have. Who does she think she is? She knows that it's 100% therapy that's gotten him to this point? No one knows that! She brought back by his shoes that go over his AFOs which have gotten too small for him for him to just wear the shoes without the inserts but if he can pull his feet out of smaller shoes that are his size how does she think these will stay on his feet when they're a size bigger? She said all we can do is try and they're just recommendations. Well they sure seem like more than that when she says them!
Saturday, November 6, 2010
There's one thing left though that still bothers me that I feel like I need to get out. I was a member of a board online from the time I was pregnant with Joshua until December when I went to Joshua's physical therapy evaluation when I posted about it and didn't like the responses I got. I realize now I was never really a part of it and a lot of it is a popularity thing and I wasn't part of the popular group. I tried really hard to stay involved and I'm now wishing I had some of that time back to enjoy my time with Joshua as a baby more, it went by way too fast. I am glad I met some of the ladies on there that I am still in touch with and have been good friends to me. I am thinking now of ways I could have responded better to what was said but I don't think I could have back then, I think this past year and getting Joshua's diagnosis is what enables me to respond in a different way now.
Basically they didn't know what I was going through and had no way of knowing how it affected me. Part of what was said was based on the way the physical therapist treated and talked to me making me feel responsible for Joshua's delays. I know now that I was not responsible and feel worlds better about that. He has a condition he's had since conception, nothing we did caused or changed that. I am glad I didn't know ahead of time, I was able to enjoy my time with him in the beginning. Had we done prenatal testing who knows what our decision might have been. It will affect our decisions going forward and that's inevitable. I'm getting off topic here. Part of what was suggested was to suck it up and deal, cry about it and get over it. Having been through this past year I know that I would still be crying, it is not something you just get over. Other moms of special kids understand. That has been helpful to me, knowing other moms who have been in similar situations.
Also I have learned that I cannot do everything that his therapists recommend. There isn't enough time in the day and I have to find balance that works for me as this is our life and will be going forward for some time. Other moms of special kids would agree with me on this. I do know that I am doing the best I can, every day. The therapists don't always think about how what they say affects parents. I don't think they consider the time restraints or other therapies that he has and factor that in to our time. Of course I want what's best for him but that is for me to decide, not his therapists. They make recommendations but they don't know him like we do and no one knows whether it's the therapy or him making the improvements himself. Of course we will continue therapy with him but he has to have time to just play on his own without every second being therapy. Some therapy is play but some isn't and we can't expect him to work all the time.
Also something the neurologist said stuck with me, we can't change nature and while we don't know what the future does hold it's likely that he will get there at some point regardless. I also know my son better than anyone and if he isn't ready to learn something he just isn't going to do it. We have been trying to get him to walk for a long time and he's just not ready, period. When he wants to learn something he will pick it up right away. Just yesterday he learned to turn something on his pop up toy and it only took one time and he got it. However he does not want to stack blocks or pound pegs, period. His OT keeps working on those with him but he hates it. So basically I have some wisdom on this whole process now that I didn't have a year ago. I also know Joshua better and can predict his behavior better.
In less than 3 weeks Joshua will be 2 years old and I have no idea where this year went. We are so busy with therapies, preschool and appts. We did take two great vacations this year but somehow the year slipped by. I am trying harder to savor time before Joshua is another year older.
Tuesday, November 2, 2010
Sunday, October 24, 2010
I think what's bothering me right now though as much as all of that is that I feel so much pressure and I wonder if parents of other kids who go to therapy feel this way as well, I feel pressure to do the things the therapists want us to do, all the time. I have to admit to not doing as much as I should and certainly not as much as they want me to. I feel like he has to have time to just do whatever he wants to do. A big part of it is I don't know how much it will help him and he fights me on a lot of his therapy. If he doesn't want to do something he's not going to do it. Like walking, if he doesn't want to walk he will just not put weight on his feet, period. It is a waste of my time to try to get him to walk when he doesn't want to which is most of the time. His PT has a special walker that he gets attached to so he can't just sit down, it holds him in it. His walker at home doesn't do that and he hates it and rarely walks in it. This is it http://www.easy-walking.com/up-n-go/models-pricing/toddler/
There's also an argument between his OT in Hartsville and his PT who wants him to wear a hand splint which separates his thumb from his other fingers which he apparently likes to hold his thumb in and they don't want him to do that. Now he has the splint and he still tries to put his thumb in his mouth when he's wearing it. The OT was saying that it's only a bandage on the problem.
I personally think that most things as I have seen with Joshua will happen when he is ready. I don't know when and I question pushing him and spending all my time and energy on it when I don't know how well it's working. I think he will get there when he is ready. I know this has been a ramble but I guess what I'm trying to say is that I'm tired of all his therapists wanting us to do so many things me being stuck in the middle. I need to speak out more and tell them but sometimes when I do it falls on deaf ears. I have been signing with him for a long time and he hasn't picked up on it, which is frustrating to me. His early interventionist seems to take whatever the therapists say as gold even when I tell her other things. So moms of kids who go to therapy do you ever have issue with the kids therapists? Do you feel like they ask a lot of you?
Friday, October 8, 2010
Dear Dr. in Greenville:
You may not remember me, my husband or my son but we saw you in May of this year. It was a brief visit during which you only mentioned the possibility of Autism. I sent you an e-mail and also discussed with you during this visit the possibility of him having sensory issues without being Autistic. You seemed to dismiss this possibility and I know that such a disorder does exist. You have been the only professional to see the possibility of Autism in my son. All other professionals (doctors and therapists) completely disagree with this. He is, however, going to be evaluated for Autism. It turns out that the reason for his developmental delays is a genetic condition that was discovered by a visit to Greenwood Genetics and a blood test, the microarray. It is MECP2 Duplication Syndrome, an x-linked neurodevelopmental disorder. It is possible that with this disorder he can have Autistic like behaviors or symptoms and he does have sensory issues which could be under that umbrella but he does not have any other Autistic behaviors or symptoms. We saw a neurologist this week who was very impressed with Joshua’s eye contact and how social he is. I just wanted to let you know what the status was of our son. I hope you will take into account the possibility of Sensory Integration Disorder as a cause of other children’s behavioral or developmental problems. While those with Autism do have sensory issues it is not required that you must have Autism to have sensory issues, it can stand alone or be associated with something else. We will not be doing ABA therapy with Joshua but will continue with occupational, physical and speech therapy as well as sensory integration therapy and cranial sacral therapy.
Dear Dr. in Charleston:
You may not remember me, my husband or my son but we came to see you in June of this year. I found you through the Sensory Processing Disorder’s website, listed you as a pediatrician who specialized in sensory disorders. I have to tell you that we were made to wait an hour before we saw you and we were coming from Columbia, I feel that is too long to wait. Your assessment of him was brief but you said you would be in contact with us and all of his therapists. We did get blood work and an eye exam done but I had to make quite a few phone calls to ensure those appointments were made. You never did contact any of my son’s therapists and I was disappointed, I felt that you would help us and I was let down. We have found an OT in Hartsville who has been helping my son with his sensory issues. We did not choose to change his diet though the blood tests said he was allergic/intolerant of some foods. We saw an allergist who said that since he was having no visible reactions to the food that he did not think we needed to worry about it. I feel that we have so much to worry about with our son as it is that a drastic change in his diet would be too much for all of us to deal with. We have found out that our son has a genetic condition, MECP2 Duplication Syndrome. It is a x-linked neurodevelopmental disorder. So it turns out that his delays are not caused by food but by this disorder and no one that we have spoken with has thought that changing his diet would help. We are continuing with all of his therapies; occupational, physical and speech and have added sensory integration and cranial sacral therapies as well. We saw a neurologist this week who was very impressed with our son’s eye contact and how social he is. We are having him evaluated for Autism, with his disorder Autistic behaviors and symptoms are possible but we are only seeing the sensory issues. I just wanted to update you on him.
Wednesday, October 6, 2010
Monday, October 4, 2010
It had been a few weeks since we had seen the geneticist and gotten ourselves tested for myotonic dystrophy and we were still waiting on the results from that and from Joshua's other tests. While we were on vacation the results came in and I had two messages waiting for me from the genetic counselor. I called her back on Friday and left her a message but I found out this morning she was in a conference on Friday so I was left wondering all weekend what the results were, not fun.
This morning I called and left her another message, this time she called me back. Apparently my husband tested negative for myotonic dystrophy or I should say that his numbers were too low for him to test positive. I, on the other hand, tested positive just barely high enough to be considered positive yet I've had no symptoms of the disorder and I pray I never will.
The bigger news was that I was probably right that it was not the myotonic dystrophy causing Joshua's delays. Joshua's other genetic test came back positive for something else, MECP2 Duplication Syndrome. I don't know a lot about it, I have chosen at this time not to research it like crazy and scare myself with all the possibilities (the genetic counselor warned me that most of the information about it is negative). What I do know is that it is a x-linked neurodevelopmental disorder. Joshua only tested positive on one of the two genes that this disorder is linked to and that's good. Something else that's good is that 75% of kids have recurrent infections from birth and Joshua has not, 50% have seizures and Joshua doesn't. She said that his case is not textbook and that is good. She said he will still show us what he can do, it's a variable disorder. I'm not going to let this define him. If you want to look it up take the information with a grain of salt (that's what she told me to do).
Monday, September 20, 2010
Monday, September 13, 2010
I know some people think it's tacky or whatever but in our case I think it's understandable since you may not know what to get him. Some typical 2 year old toys wouldn't be appropriate for him and we would either have to stash them away until he's older or return them. I have created wish lists with items that I know would be good for him now. You can use it as a guide or you can purchase something directly off it, if you do and you're in a store be sure to let them (or me) know so it can be taken off the wish list and someone else doesn't buy it.
Here is his Toys R Us Wish List
Joshua's Toys"R"Us Wish List
Here is his Amazon Wish List
Joshua's Amazon Wish List
Tuesday, August 24, 2010
It may or may not be responsible for all of Joshua's delays. It can affect all areas of his development and the geneticist said even some of his sensory issues so he may or may not have sensory processing disorder, there is really no way to tell and the therapy we would do is the same so we will continue doing what we are doing. One thing that both the geneticist and the genetic counselor said is that Joshua will show us what he can and will do, that we should not underestimate him at all.
So for now no changes to his therapy. We are still going to Hartsville once a week for cranial sacral therapy. Joshua's OT at home will be doing sensory integration therapy with him starting this week. So we are doing all that we can be doing.
Thursday, August 5, 2010
Dear Grandma and Grandpa:
I have heard that we will be staying with you again for Christmas this year! I know you have noticed that visits away from home are very hard for me, so I decided to write you and give you some ideas for making my time with you a lot better than it was last year.
I know Mom has told you about my "hidden handicap" called Sensory Processing Disorder. SPD is a neurodevelopmental disorder that affects my brain and makes it different than others.SPD is a complicated disorder and research is only starting to come out about it.
The best thing you can do is don't judge my parent's efforts. Everyone is always giving them advice about me- like they know better how to handle me than Mom and Dad. But nobody else lives with me, and it's really hard on my parents when people who don't live with me try to tell them how to do it. They know you have the best intentions but, honestly, we have been through so much already and they are so familiar with me and my needs. I know they are human, but sometimes I think they must be angels. They are such great people and they need your support.
It might sound like I'm asking you to change yourself, but I'm really not. I just want to ask you to be patient with me and understanding with my parents. I am trying hard to cope with everything, and they're doing their best to help me.
Do you think you see the world now a little bit like I do? That's what I hope. I am just me. I am like you in lots of ways and I'm different in other ways. There will be a place for me in the world, and I plan to do great things when I grow up. But in the meantime, at this family celebration, we'll all have a better time if you can take the time to imagine how I feel, to realize that I want to be "good" and participate, and I am doing the best I can!
See you soon!
Wednesday, August 4, 2010
I've been feeling rather blah lately, maybe more than lately. Ever since Joshua started early intervention my life hasn't been exactly peaches and cream. First it was just physical therapy, now we're doing speech and occupational. I have really been feeling like I need to be doing more. I am hoping that we are on the right track with the OT we found in Hartsville who we will be traveling the 2.5 hours round trip to see once a week for now. He is also on a waiting list for Total Rehab SC to go there for OT but it will be at least October before that happens. There are other similar places I have called but they all have waiting lists at least as long and this one is the closest to our house. In the meantime he will be getting a new OT who has some sensory experience but that will be a few weeks. I have called OTs who are experienced in sensory and none are available right now, apparently they're in very high demand in my area. Basically an OT usually works on fine motor but we need one who will also address Joshua's sensory issues.
For a long time I felt like we were in a holding pattern, I didn't know what else to do, I was so frustrated. Since Joshua started early intervention it has pretty much been my life, I handle most of it so my husband can do what keeps him just as busy, his business. Joshua is my own little business. I read books and do research on the internet about what else we can do for him. Then I try things out with him. The OT has us working on improving his grip and of course we're trying to get him to walk. Joshua is very, very stubborn. If he does not want to do something you can stand on your head and he still won't do it. The PT wants him to use his walker but if he doesn't want to he won't stand up and I can't make him. Same with any other type of therapy. I want him to pull the rings off his ring stacker but if he doesn't want to he won't do it, he knows I want him to do it so he goes to play with something else. It's frustrating and heart breaking. I want nothing more than for him to do the things other kids his age do but what more can I do? That's what I am always asking myself, what else can I do? I would do anything for him.
Thursday, July 29, 2010
Yesterday we went to Hartsville to see the OT who is a sensory specialist. She confirmed what we all suspected which is that he has sensory issues, specifically proprioceptive, tactile and vestibular. His body is not receiving the signals his brain is sending out or something like that, I'm really not sure. I've done some reading on Sensory Processing Disorder or Sensory Integration Disorder and really am still trying to figure it out myself. For now we are going to be making the trip to Hartsville once a week so she can work with him and we are going to try to do some of the stuff at home although I'm not sure how much of it I remember I will keep trying as always.
I feel like time is passing us by, Joshua is getting older but in most ways he's still a baby just toddler sized now. I want to do everything I can to help him and will do whatever it takes. For now he will not be seeing the pediatric neurologist since they claim they won't take any new patients who aren't having seizures or other obvious neurological dysfunction. We are still going to be seeing the developmental pediatrician here but no word on when. I am feeling a little better knowing we are hopefully now on the right path.
Friday, June 11, 2010
Our appointment was for 2pm so we decided to pick Joshua up a little early from preschool so we would have time to have lunch on the way down. 10:40 to 11:10 has been their outside time, they put the kids in a buggy designed for multiple kids and stroll around the Epworth campus. This almost always puts Joshua to sleep which is why he hasn't been sleeping in the car on the way home because they have been going outside lately. Thankfully they were getting started late and had just gotten outside when we got there so he fell asleep promptly in the car. He slept for about an hour and woke up when we were between Orangeburg and Summerville.
We had lunch in Summerville and got to the doctor's office at about 1:45. We then waited until 2:30 to get into the room and then until after 3pm to see the doctor. We were not happy about this but it was our only complaint, the visit was worth it. Joshua was tired by then, really tired. He spent the next half hour or so crying, poor baby. The doctor then went out and got some cheerios and he perked right up, he sure does love to eat!
She took a history from us about him. She also read over the Infant/Toddler Sensory Profile that they had mailed to us, we filled it out and brought it with us. She tried to observe him and get him to do things but up until she brought in the cheerios he was so tired he wouldn't do anything but cry. She is certified in sensory integration as well as being a pediatrician with years of experience dealing with children with all types of special needs. It didn't take her long to see that he is a "sensory" kid. I told her that the PT had been calling him that. It was a pretty whirlwind appointment, Joshua being fussy and we didn't really go into specific detail, I didn't get to ask her all the questions I had but we are going to be e-mailing.
She took down all the numbers of all of the therapists and the EI, she's going to call all of them and formulate a plan of what they can do and what we can do with him. She told us to read The Out Of Sync Child and Raising A Sensory Smart Child. She is going to get him an eye test, we know he can see she wants to know how he sees. We are also going to get him tested for food allergies/sensitivities. I had done some researching and food can play a part if the child has sensitivities. I'm sure there will be more to come as we learn more about it and start working with him. She said that often she doesn't see the kids until they're 3 or 4 so we are really ahead of the game.
Overall we are very pleased we went, the traffic and waiting we could have lived without but we are glad we found her. I feel like now we have a team behind us and that will really help. Looks like we'll be canceling that appointment in July in Greenville.
Wednesday, May 26, 2010
His stats are:
32 inches tall (42nd%)
25lbs (40th%) We think he might be a little less since he was fully clothed and wearing shoes when they weighed him, unusual since they usually get him undressed before they weigh him.
48cm head (57th%)
He is in size 4 diapers and mostly 18 month clothes.
He had apparently missed a shot so he was due to get 4 but by doing that he doesn't have to get any shots (except maybe a flu shot once a year) until he's 4!! So we went ahead and did it. He seems fine, he is cutting his upper molars and canines so he's cranky from that but not too bad. He has all his bottom teeth until his 2 year molars come in.
We told her that we are trying to get a sensory evaluation done since the PT thinks he has sensory processing disorder. She didn't say much, I'm not sure she knows much about it. We went over the M-CHAT screening for Autism but she said that even though we answered yes to some of the questions since he is delayed in all areas it wouldn't be right to just put him in that category.
We did make an appointment with a pediatrician in Charleston who is certified in sensory integration. I have left a message for her because I want to be sure she can evaluate him since the test that is usually used is for kids 4-9. We don't want to make a trip down there if she can't evaluate him but I do want another opinion so we will see what she says.
Wednesday, May 5, 2010
Thursday, April 29, 2010
I can remember back to the early days of nursing him as a newborn and not thinking I'd ever make it but I did and wouldn't change it for the world. I know I did my best and gave him the best start. It's hard but worth it. The pride I feel knowing that I nourished him before and after he was born, that he only needed me to survive his first year isn't measurable. There was a study done recently that said that if 90% of US women breastfed thier babies for the first six months it would save $13 billion dollars (not including formula) and 900 lives of babies, I can only hope more women try because it's worth it, our babies are worth it. 75% of women start out breastfeeding at the hospital but only 14% actually make it to 6 months.
Friday, April 9, 2010
We briefly discussed the Greenville Developmental Pediatric visit with her and she agreed with the nurse that he doesn't fit the mold of a child with a sensory problem. She was concerned and wants to get to the bottom of what's going on. We told her that we found out it's a 3-4 month wait for a genetics appt and she said that it's the only place in town but they are very good and thorough so we are going to make the appt.
Earlier this week we met with the speech therapist to go over her evaluation and set up goals. It was hard to hear again how he is delayed and she put him at a moderate to severe speech delay (both expressive and receptive). So we have a lot of work to do. I was a little (ok a lot) overwhelmed by this and the dozen goals she has set up for him. She did say that we don't have to work on them all at once although during her sessions with him she will try to work on as many as she can but we should focus on 1 or 2 at a time. He starts next week so I will get more details about how to work on each individual goal and which ones she thinks we should start with.
We are also getting an occupational therapy evaluation but I'm afraid that starting that right now as well will be too much for both of us. It's not yet set up so it's just as well, we have to get adjusted a little to the new schedule before we start something else.
Wednesday, March 24, 2010
Tuesday, March 16, 2010
Friday, March 12, 2010
Tuesday, March 2, 2010
Friday, February 26, 2010
Something else I forgot, he has pretty much given up the pacifier in favor of his thumb. It started a few weeks ago when I didn't give him the paci fast enough he would use his thumb and we just gradually stopped offering the paci so now he uses his thumb. It's a lot more convenient and the pedi has said before that she'd rather he used it.
Joshua now only has to be in his stander for 20 minutes per day. He got a walker, a brand new one from the PT./K509.html"> He should be in it for a few minutes at a time and just walk a few steps. The PT really thinks it is a reachable goal for him to be walking a few steps by himself by Easter. She was very happy to hear he’s going to Epworth preschool next week. She knew about it but didn’t know it was still open, I guess she hadn’t been there in a long time.
He had his 15 month well visit today. He’s 23lbs (25th%), 30in. (20th%) and his head circ. Is 48cm (70th%). The Pedi was very pleased that he has an appt. next month at developmental peds, we are all surprised the wait was so short. She said the appt. is usually quite long, it’s a play based evaluation; they want to see what he can do. Overall she was happy that he’s improving, she’d never heard of Epworth preschool but is excited about it for us.
I can’t believe he’s starting preschool on Tuesday, that my Mom is moving to Columbia next weekend and she will be 1 mile from the preschool! It really does feel like it was all meant to be, it fell into place so easily. Thank you, G-d!
Wednesday, February 24, 2010
Monday, February 22, 2010
Saturday, February 13, 2010
Thursday, February 4, 2010
Some more news is that our pediatrician referred us to a developmental pediatrician. All the paperwork has been completed and we should be hearing from them soon. There is a pretty long waiting list so it will be months before we go and maybe by then he won't need it, who knows. I think the next thing to work on after PT will be ST & OT. He is very close to pulling up, getting on his knees a lot.
Next week we are going to see a preschool for kids with developmental delays, they take kids ages 1 & up so if there's room he could start going soon. It would only be 1 or 2 mornings a week to start out with. It's the only one like it in the state (SC) and happens to be in my city, downtown. It's through Epworth which does EI in addition to the preschool. I'm very excited about it.
The PT says Joshua only needs to be in his stander for 30 minutes a day now; two times 15 minutes each. She wants us to work with him on using his left side more. He favors his right hand and uses it more. She is pleased with his progress overall.