I sit here and look back on 2009 and what a year it was. I sure hope 2010 goes better then it has started, our house has all been sick, the good news of it all is A. we've gotten it all out of the way and B. we are all on the mend.
January is shaping up to be a busy month for the little man...
Starting on the 4th for a check in with his dietitian.....and she isn't going to be happy. It has been rather hard since he started school dealing with his feeds and getting all he needs into him. This break has helped a ton because I have been able to up his dose into 3 feeds not 4 and still run them at an hour or a little longer. This is HUGE....meaning his little tummy is tolerating more volume.
The 5th both kids have their 6 month check with the dentist. It is never a great time for Zachary, but if you recall last appointment went better then I thought with little along the lines of a shut down. Fingers crossed Tuesday goes as smoothly.
We are adding a new doctor to our list this month a child psychologist. Zach's first appointment is the 19th and I am excited to hear her take on my little man and his situation. I've been very quiet about what has been going on with him because I'm worried and a bit taken back by it all. There have been lots in his life that seem so overwhelming to me and for some reason this is at the top for me. It isn't everyday you hear of a 3 year old going for a psychological evaluation. As I've been reminded by some.....we don't know that anything is psychologically wrong with him, but from what I've been seeing so much more of I would venture to say there is and I can not ignore what is happening.
We also have to get back on schedule with school and therapy -- this is never an easy task for Zach to get used to.
I was also very fortunate to have a lovely lady pop into my life.....you know I feel like things just happen for a reason and some people are able to really point you in another direction. This woman is a truly AMAZING mother and person....she is an angel walking on Earth. It was because of My Button Buddies that she called and the conversation went from the pads to diagnosis of our children. I learned about her daughter, Ana and their families journey to find answers. Here is her blog for those of you interested in reading http://www.helpcureanamaria.com/ By meeting (well, over the phone Emmy) I learned a lot and was able to pass more information on to Zachary's pediatrician....Please hope and pray Zachary is able to get into the doctor that Emmy told me about....Maybe 2010 will bring some answers for Little Zachary!
Friday, January 1, 2010
Thursday, December 17, 2009
Seems Like Forever
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WOW has it really been since the 2nd that I've blogged?!?! I real do need to catch up....
As usual things around here have been insanely busy. The appointments don't stop, the therapy doesn't stop either, the kids are still kids - school is going well for them both, the puppy is growing, our life is out of control at times BUT for the time being I think I'm at peace with the world around me, or maybe trying to be a tad oblivious to it all during the holiday season. A little peace of mind is a great thing now and again!
I'm sitting here thinking about what has been new.......A bunch has happened and somethings for the time being I'd rather not talk about....I will at some point but for now not talking and trying to forget is a good thing for me.
Let's see...our SLP has gone to Zach's school to observe him in that environment. Her report is interesting to say the least. His OT has run some more tests...again more interesting information has come out of that. His pediatrician is working on getting him in for a psychological evaluation. We are talking about buying an AAC devise http://www.orin.com/access/Proloquo2Go/ because he will no longer talk when he is uncomfortable - he totally shuts down and is not in his own body. We were just at the allergist, who for right now is just going to let Zach be Zach but in April we will be running more tests :( We have many more appointments lined up (as normal for us).
I've been quiet.....I've been quiet, because some of the things going on simply aren't easy for me to deal with.
Wednesday, December 2, 2009
A Boy, A Girl and Their Puppy
Meet Otis - He is our new family member..... 
A Boy and his Puppy...best of friends already...
Otis and the kids checking each other out...
A Girl and her Puppy....trying hard to get Otis to walk on his lead...
Bath time for the kids, but guess who wanted in.....So far Otis has been the best thing to happen to our family in a long time. He is proving he is an amazing companion for all of us, most of all Zachary. When Zach wakes up in the morning, Otis comes right up to him and rolls onto his back for a morning pat :) Doug and I can tell there is a different vibe in the house...much less stress, which is surprising for having an eight week old puppy.
Thursday, November 12, 2009
Slight Update On My Last Post
I had a nice long conversation with a good friend of mine today who is a counselor. I was asking for her opinion on Zach and if I should have him evaluated by a psychiatrist. She thinks no to a psychiatrist but YES to a psychologist after I give him some more time to adjust since he's had so many changes lately. Her idea is to wait until after the New Year if he is still showing no signs if improvement with taking in social situations or more regression.
She knows and works with many child psychologists and is going to ask for ones opinion this week. Zach is so young and most won't work with kids under 5.
She also thinks that his OT had her disorders messed up and that she may have meant he may have a dissociative disorder (http://en.wikipedia.org/wiki/Dissociative_disorder) which makes more sense with all his other issues and things he has been threw in his life. She was also saying it seems as if he has sever anxiety -- which also makes plenty of sense and falls in line with the selective mutism. She also reminded me Zach is a very smart little boy and may be more aware then what I think of the way he speaks (which is not clear) and that could yet be another thing that triggers the social issues.
AHHHHH there is just so very much to my little man -- he by far is a very complicated little person. I'll go back to what I said earlier today ----- I will not lose hope, one day we will find an answer!
She knows and works with many child psychologists and is going to ask for ones opinion this week. Zach is so young and most won't work with kids under 5.
She also thinks that his OT had her disorders messed up and that she may have meant he may have a dissociative disorder (http://en.wikipedia.org/wiki/Dissociative_disorder) which makes more sense with all his other issues and things he has been threw in his life. She was also saying it seems as if he has sever anxiety -- which also makes plenty of sense and falls in line with the selective mutism. She also reminded me Zach is a very smart little boy and may be more aware then what I think of the way he speaks (which is not clear) and that could yet be another thing that triggers the social issues.
AHHHHH there is just so very much to my little man -- he by far is a very complicated little person. I'll go back to what I said earlier today ----- I will not lose hope, one day we will find an answer!
Wishing I Had More
ANSWERS!!!!
I wish I knew what was really wrong with Zachary. He has so much going on but lately more seems to be coming to light and it is so very frustrating.
This past weekend we took Zoe to a birthday party, normally we would know more people there then the birthday family but this time our other friends were not there. There were over 11 children plus the parents and out of that we knew 7 people (3 adults and 4 children). While we were there Zach would not speak a word, would not make eye contact (I got him to make some with me and he would whisper to Doug and I but that was the extent of it). We stayed on one side of the room to make Zach feel more comfortable and in his own space.
A little boy (about 3-4 years old) came up to Zach and was asking Zach his name. Zach kept backing up away from this child as the child would move closer to Zach. I let him be to see what would happen BUT Zach got cornered and his face turned pale as his lip started quivering so I grabbed him and placed him on my lap. Zach immediately turned around grabbed my neck tight, laid his head down and cried (a silent cry). I told the little boy his name was Zach and he was a bit shy. The boy looked at another kid and shouted "This kid is weird!" Those words keep echoing in my brain -- what I wanted to do/say to this child I had never met...well, I'm sure you can imagine. AND what did the parents do about it? ABSOLUTELY NOTHING! Now, granted I don't know them and they don't know me or Zach's situation but still you would think a gentle "that wasn't nice...say you're sorry" would have been interjected in this scene. Then again what could you expect from a couple who were standing across the room from us -- after the incident --- and I hear this coming from the mom.........."What is the deal with the people who's son won't talk?" HELLO Lady I'm right here ask me or for god sake don't talk in the loudest voice possible!!!
The nerve of some people will never cease to amaze me. Maybe I'm a bit too sensitive to this scenario as it plays out around me time and time again....I simply can't get used to it.
Then Tuesday at OT I brought what happened up to Ms. Jerry (who, rightly so, has become more concerned about Zach's social issues - since they are happening more) We decided it would be best to make Zach some social books that we right and put pictures in so that he will understand. The first book is called "Making New Friends: A Social Story" it is cute and simple but Zach hates reading it. To me it seems even taking about this puts him over the top.
Wednesday came along and at OT Ms. Jerry says to me that she is "Very concerned about Zach's social abilities" and that when we came to her when he was 18 months old she noticed then how disconnected he was. That by now he should be getting better - but he is not he is getting worse (only when not in a familiar situation or comfortable setting) she brought up "attachment disorders" and us taking him to have him evaluated by a psychiatrist - to see if this OR something else is an issue.
Ms. Jerry said "one good thing is he won't talk to strangers" - she was trying to make me feel better. I reminded her that there is a HUGE negative to this all too.........that if someone were to take him he also wouldn't scream or cry or yell or fight back. This is when we started talking about getting him an ID bracelet - the conversation quickly turned into placing a chip in my child as some people do with extreme situations. She said our case is an extreme situation :( I just want to sit and cry.
It is already hard knowing there are issues but with Zach having progress in some areas and not in others (in fact getting worse in other areas) it is really hard not knowing EXACTLY what is wrong with my son. As sad and frustrated as I am right now....I will not stop holding out hope that one day we will know more about Zachary.
I wish I knew what was really wrong with Zachary. He has so much going on but lately more seems to be coming to light and it is so very frustrating.
This past weekend we took Zoe to a birthday party, normally we would know more people there then the birthday family but this time our other friends were not there. There were over 11 children plus the parents and out of that we knew 7 people (3 adults and 4 children). While we were there Zach would not speak a word, would not make eye contact (I got him to make some with me and he would whisper to Doug and I but that was the extent of it). We stayed on one side of the room to make Zach feel more comfortable and in his own space.
A little boy (about 3-4 years old) came up to Zach and was asking Zach his name. Zach kept backing up away from this child as the child would move closer to Zach. I let him be to see what would happen BUT Zach got cornered and his face turned pale as his lip started quivering so I grabbed him and placed him on my lap. Zach immediately turned around grabbed my neck tight, laid his head down and cried (a silent cry). I told the little boy his name was Zach and he was a bit shy. The boy looked at another kid and shouted "This kid is weird!" Those words keep echoing in my brain -- what I wanted to do/say to this child I had never met...well, I'm sure you can imagine. AND what did the parents do about it? ABSOLUTELY NOTHING! Now, granted I don't know them and they don't know me or Zach's situation but still you would think a gentle "that wasn't nice...say you're sorry" would have been interjected in this scene. Then again what could you expect from a couple who were standing across the room from us -- after the incident --- and I hear this coming from the mom.........."What is the deal with the people who's son won't talk?" HELLO Lady I'm right here ask me or for god sake don't talk in the loudest voice possible!!!
The nerve of some people will never cease to amaze me. Maybe I'm a bit too sensitive to this scenario as it plays out around me time and time again....I simply can't get used to it.
Then Tuesday at OT I brought what happened up to Ms. Jerry (who, rightly so, has become more concerned about Zach's social issues - since they are happening more) We decided it would be best to make Zach some social books that we right and put pictures in so that he will understand. The first book is called "Making New Friends: A Social Story" it is cute and simple but Zach hates reading it. To me it seems even taking about this puts him over the top.
Wednesday came along and at OT Ms. Jerry says to me that she is "Very concerned about Zach's social abilities" and that when we came to her when he was 18 months old she noticed then how disconnected he was. That by now he should be getting better - but he is not he is getting worse (only when not in a familiar situation or comfortable setting) she brought up "attachment disorders" and us taking him to have him evaluated by a psychiatrist - to see if this OR something else is an issue.
Ms. Jerry said "one good thing is he won't talk to strangers" - she was trying to make me feel better. I reminded her that there is a HUGE negative to this all too.........that if someone were to take him he also wouldn't scream or cry or yell or fight back. This is when we started talking about getting him an ID bracelet - the conversation quickly turned into placing a chip in my child as some people do with extreme situations. She said our case is an extreme situation :( I just want to sit and cry.
It is already hard knowing there are issues but with Zach having progress in some areas and not in others (in fact getting worse in other areas) it is really hard not knowing EXACTLY what is wrong with my son. As sad and frustrated as I am right now....I will not stop holding out hope that one day we will know more about Zachary.
Wednesday, November 11, 2009
Meet Otis
Meet Otis, he is our new family member (he comes home the day before Thanksgiving)We have been contemplating a puppy for a long time now.
What was stopping us from getting one you may ask.....well first and foremost both Zoe and my husband are allergic to dogs. Secondly we've always wanted a big dog and there are not many hypoallergenic big dogs out there.
That leads to what made you decide on getting one then.....well, we decided it would be best to get one because of Zachary. Our breeder will take the puppy back and refund 100% of our money if Zoe can't handle it (but to be safe we have gone and played with the big dogs and puppies multiple times and no reactions from her) Plus he will be a large dog - about 70lbs - he is a Labradoodle, so he is hypoallergenic (we also made sure he would have a curly coat which is better for allergy sufferers). The other positive to getting this type of dog is they make excellent therapy dogs - which is another reason for getting him. Not only can he help Zachary but he may help others.
While we were at puppy pick day Zach had fallen and was crying. Otis came right up near him, sat down, and started whimpering as if to say "are you okay?" This sealed it and we new he was 100% the one for our family at that point.
The kids and I are trying to get another puppy too (the husband really wants her too - but can't make up his mind) --- his sister. I'd hate to separate them. If we get her, I'll put pictures of her on the blog too.
Monday, November 2, 2009
Update on SLP Testing
It had been a long while since Zach's old SLP ran the Kaufman Speech Praxis Test For Children (KSPT) on Zachary. She kept saying that she felt his Verbal Dyspraxia was getting better.
Well....the new SLP, Ms. Andrea did not feel the same way. She kept saying that it seems like it is still there with other components as well -- the dyspraxia, the VPD, the major articulation issues, the selective mutisim. So last week she decided it was time to run the KSPT again. Zach did great, he sat threw the whole test like a champion! -- That was Tuesday.
On Wednesday the test was scored and we were able to go over it. HUMPH!!! Ms. Andrea was right his verbal dyspraxia is still there (not like I didn't know it -- but honestly you get your hopes up when someone says it is going away) Not only is it not going away and just becoming an articulation issue BUT it is still very prevalent and as she said "in some areas - yes it is getting better, almost what I would call a mild case but in other areas I can't call it mild - it truly is still a moderate to sever case of verbal apraxia" :( His scores were not good and placed him at about the 14% for children with apraxia and 2% for children without it - giving him and age range of slightly over 2 years old --- this means he is still a year behind on his speech (as far as the apraxia is concerned)
This whole apraxia issue has always been rough to deal with but as he is getting older I'm learning there is so much more to it then the times he cannot speak....the articulation issues are awful and we are starting to believe that is why the selective mutisim is coming out. I've been told this is common - the child is aware of what they can and cannot say and so they just stop talking. We also know the VPD doesn't help with the articulation - in fact it makes it worse and harder to overcome because he can't use the muscle properly. The positive is if/when he feels safe and comfortable, he can and will talk, just not clearly.
Please help support The Childhood Apraxia of Speech Association Of North America (CASANA)
I started this page a while ago in Zach's honor.....there is not enough known about Apraxia and so many children looking for help to find their voice while others around them simple have no idea this exists. http://www.apraxia-kids.org/faf/donorReg/donorPledge.asp?ievent=112756&supid=238562629 Zach is just one of the many faces of dyspraxia.
Well....the new SLP, Ms. Andrea did not feel the same way. She kept saying that it seems like it is still there with other components as well -- the dyspraxia, the VPD, the major articulation issues, the selective mutisim. So last week she decided it was time to run the KSPT again. Zach did great, he sat threw the whole test like a champion! -- That was Tuesday.
On Wednesday the test was scored and we were able to go over it. HUMPH!!! Ms. Andrea was right his verbal dyspraxia is still there (not like I didn't know it -- but honestly you get your hopes up when someone says it is going away) Not only is it not going away and just becoming an articulation issue BUT it is still very prevalent and as she said "in some areas - yes it is getting better, almost what I would call a mild case but in other areas I can't call it mild - it truly is still a moderate to sever case of verbal apraxia" :( His scores were not good and placed him at about the 14% for children with apraxia and 2% for children without it - giving him and age range of slightly over 2 years old --- this means he is still a year behind on his speech (as far as the apraxia is concerned)
This whole apraxia issue has always been rough to deal with but as he is getting older I'm learning there is so much more to it then the times he cannot speak....the articulation issues are awful and we are starting to believe that is why the selective mutisim is coming out. I've been told this is common - the child is aware of what they can and cannot say and so they just stop talking. We also know the VPD doesn't help with the articulation - in fact it makes it worse and harder to overcome because he can't use the muscle properly. The positive is if/when he feels safe and comfortable, he can and will talk, just not clearly.
Please help support The Childhood Apraxia of Speech Association Of North America (CASANA)
I started this page a while ago in Zach's honor.....there is not enough known about Apraxia and so many children looking for help to find their voice while others around them simple have no idea this exists. http://www.apraxia-kids.org/faf/donorReg/donorPledge.asp?ievent=112756&supid=238562629 Zach is just one of the many faces of dyspraxia.
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