So basically, all is calm on the Western Front, so I figured it was time to finally work on me. As you can imagine, with 3 kids, even typical kids, life can be pretty insane, and so it has been quite a long time since I have had an opportunity to work on myself. Thankfully I have some pretty amazing friends, who have been great about reminding me of the important rule that is clarified every time you fly somewhere.... you can't take care of others, unless you care for yourself first, so ALWAYS put on your own oxygen mask before helping someone else put on theirs!
Apparently, it is time for me to put on my oxygen mask! I have started seeing a therapist once a week and so far I am 3 weeks in and I am loving it! The best part by far is that I don't leave there wanting to kill myself. You see the only therapy I have ever done in the past has essentially been the kind where you walk in feeling great and you leave after talking about how shitty life is and you basically feel like it is time to drop dead.
This therapist is amazing at helping me see what I am already doing well, recognize what I can change and then making a plan for how to implement the change. The best part is that after my first hour of therapy I already started implementing awesome changes, AND I have lived to tell the tale!
I have always been a pretty reactionary person.....if you upset me, I have been quick to either cry or to send you a strongly worded email. When I cried, people often felt I was angry and so I rarely got the help I needed, and well, the strongly worded emails often were also not seen as a cry for help but rather they were interpreted as a big "f" u.
I am working hard at breathing through my intense reactions to events and I have realized that I have about a 30 minute upset time and that once I get through that really intense upset time I am able to either:
1. see life more clearly and respond appropriately
2. move on to something else and realize it really wasn't a big deal in the first place
3. address whoever I had the concern with and respond appropriately
What I have realized is that all I have to do is get through the first 30 minutes. As long as I don't let myself anywhere near a computer, I am doing pretty ok with that. No nasty emails have been sent, and I am more clearly able to problem solve. I have realized that while the first part of those 30 minutes can be really intense for me and include some really strong emotions, after that things get better.
I am learning that I can do anything and deal with any situation if it is just hard for 30 minutes and that is a very powerful thing to learn! Now I only wish I had learned this a while ago, because boy would life have been easier!
I am also learning in therapy that it is totally ok for me to recognize that the life I am living is not easy. I have often felt that since I chose to adopt 3 kids on my own that I have no right to complain about our challenges. As I hear people complain about the daily ins and outs of parenting, it has been a struggle for me to know how to relate to that.
As a rule most moms and caretakers complain at some time or another about "having to make dinner" or "having to grocery shop with the kids" or "having to do homework", but because I adopted my boys as a single mom these are just a natural part of the life I really wanted, so it seems odd to complain about them. However, as I am out at the grocery store with my 3 kiddos, and I bump into friends who are shopping alone, I often wonder how that must be.....in many ways I am sure it is really quiet, and I think I would miss some of the noise of my boys, but it also must be kind of blissful to be able to just be lost in your thoughts as you pick out your groceries and not have to explain again why we are simply NOT BUYING OREOS....(strange how those words are capitalized, huh!)
I am working hard to recognize that while I don't need to start "complaining" about the challenges in life, it is ok to breathe and acknowledge that something is a challenge and then be aware of my successes. It is not easy to work until 5:30, get home at 6:00, feed the kids dinner, clean up from dinner, check homework, ensure everyone has a bath or a shower, read books and keep track of all of the school reports. It is not easy to be the only set of ears that hears everything the boys want/need to share. It is not easy to juggle it all.
It is ok if not everyone gets as many showers in a week as they are supposed to. It is ok if I don't remember to initial everyone's homework. It is ok if we don't get all of the reading done. It is all ok, and from what I am hearing, it is even ok to say that these things are hard and to acknowledge that no one loves doing it all.....apparently nothing bad happens when you say that!
I think I may kind of like this therapy thing.....one hour a week, or in reality a therapists hour which is really only 50 minutes, but hey...that's ok too! It's 50 minutes all about me....for me! Kind of like a weekly present! And THAT I'm learning is MORE than ok!
Monday, December 14, 2015
Thursday, October 29, 2015
David's questions
What I love about David is that he can do and say things that would make me lose my ever lasting mind if any other human on the planet did them, and then just as I am about to lose it he brings me back from insanity to a place of calm.
I run a preschool so one might think that I am a pretty calm person who interacts like freaking Mr Rogers with my kids, but if you heard the story from David you would think that I am a constant raging lunatic.....what he forgets is that he doesn't tell the whole story. ( ok, in truth likely neither do I, but hey, my blog, my version).
David could bring the calmest person to their knees in t minus 10 seconds if he was having a David moment. He has pushed full dressers down the stairs when he was upset with a babysitter. He has ripped up countless numbers of library books faster than you can possibly get the book away from him, and he has dumped countless boxes of cereal on the table for no other reason than because he can. However, in these crazy making instances, I am often insanely calm....sure, I make him clean things up, and I let him know that the behavior is not ok, but he often looks so tiny in these moments that for me to react any way other than calm would be totally wrong, so the crazier his behavior the calmer I stay.
On the other hand, he has moments, like today when I was ready to leave the house and just needed him to pack a snack and he was on freeze mode when he frustrates me and then makes me laugh like no other human.
He needed a snack, and so I offered him cheez its or pretzels, both reasonable choices. He wanted only a granola bar, not a bar with nuts, but a bar made in a factory where there may have been nuts at some point, and so he could not bring that granola bar.
This is where it is impossible to understand David's brain- he wanted the granola bar, but he knew he could not have the granola bar, but he also could not pick between cheez its or pretzels. I packed him cheez its because we had to leave, he threw them on the counter. I offered pretzels, he kept repeating bar, bar, bar, bar, bar. Finally I said, fine take the bar, I will tell your teacher that you have it and need to eat it outside of the classroom, and he picked up the box and read to me where it says "made in a factory with nuts", and so he would not take the bar since he knows he cannot have products with nuts in his classroom.
As I once again told him that he could pick cheez its or pretzels, maybe slightly more firmly this time, he started to ask me his favorite question:
"Does Uncle Ryan yell?"
"Does Meg yell?
"Does papa yell?
And as we go through all of these and more as I become increasingly more frustrated because guess what WE ALL YELL!!!! But now he is on his yelling kick so he has to go through everyone we know to see if they yell and because he forgets who he already asked about we cycle through Uncle Ryan and Meg and Tim at least a million times! Then as I tell him for one final time, "we all yell, now cheez its or pretzels?" He says "bar", smiles at me and takes the cheez its!
It's as if he knows he is being funny and in some ways he is pulling my leg, but in other ways he is bringing me to the very brink of insanity and then pulling me back from the ledge as only David can with a twinkle in his eye and a smile on his face.......
I run a preschool so one might think that I am a pretty calm person who interacts like freaking Mr Rogers with my kids, but if you heard the story from David you would think that I am a constant raging lunatic.....what he forgets is that he doesn't tell the whole story. ( ok, in truth likely neither do I, but hey, my blog, my version).
David could bring the calmest person to their knees in t minus 10 seconds if he was having a David moment. He has pushed full dressers down the stairs when he was upset with a babysitter. He has ripped up countless numbers of library books faster than you can possibly get the book away from him, and he has dumped countless boxes of cereal on the table for no other reason than because he can. However, in these crazy making instances, I am often insanely calm....sure, I make him clean things up, and I let him know that the behavior is not ok, but he often looks so tiny in these moments that for me to react any way other than calm would be totally wrong, so the crazier his behavior the calmer I stay.
On the other hand, he has moments, like today when I was ready to leave the house and just needed him to pack a snack and he was on freeze mode when he frustrates me and then makes me laugh like no other human.
He needed a snack, and so I offered him cheez its or pretzels, both reasonable choices. He wanted only a granola bar, not a bar with nuts, but a bar made in a factory where there may have been nuts at some point, and so he could not bring that granola bar.
This is where it is impossible to understand David's brain- he wanted the granola bar, but he knew he could not have the granola bar, but he also could not pick between cheez its or pretzels. I packed him cheez its because we had to leave, he threw them on the counter. I offered pretzels, he kept repeating bar, bar, bar, bar, bar. Finally I said, fine take the bar, I will tell your teacher that you have it and need to eat it outside of the classroom, and he picked up the box and read to me where it says "made in a factory with nuts", and so he would not take the bar since he knows he cannot have products with nuts in his classroom.
As I once again told him that he could pick cheez its or pretzels, maybe slightly more firmly this time, he started to ask me his favorite question:
"Does Uncle Ryan yell?"
"Does Meg yell?
"Does papa yell?
And as we go through all of these and more as I become increasingly more frustrated because guess what WE ALL YELL!!!! But now he is on his yelling kick so he has to go through everyone we know to see if they yell and because he forgets who he already asked about we cycle through Uncle Ryan and Meg and Tim at least a million times! Then as I tell him for one final time, "we all yell, now cheez its or pretzels?" He says "bar", smiles at me and takes the cheez its!
It's as if he knows he is being funny and in some ways he is pulling my leg, but in other ways he is bringing me to the very brink of insanity and then pulling me back from the ledge as only David can with a twinkle in his eye and a smile on his face.......
Sunday, August 2, 2015
Summer time and the living is .........well, not easy, but fun!
It is very odd when you have spent years of your life worrying about something, to suddenly alter or turn off that worry, but that is exactly what I am trying to do. After worrying about Matthew so intensely since things went so badly when he was in 3rd grade, I am suddenly enjoying the fruits of my labor.
It is awesome to watch him become the big brother he always wanted to be.
It is awesome to watch him become the big brother he always wanted to be.
- He is giving Jacob piggy back rides.
- He is going for bike rides with Jacob and David and loving it
- There is laughter in my house
- Today Jacob announced to his friends that Matthew is HIS big brother, and insisted on going on a go cart ride with Matthew rather than with me!
- Yesterday David was upset and Matthew talked to David to help him calm down. This has always been something Jacob and I have done, but Matthew did it masterfully while I drove and Jacob chatted with his friend.
I am able to now see a future Matthew who has good things ahead of him.....there is still plenty to be worried about but my worries are now about how to ensure that he has the most opportunities to succeed and gain independence.
I am suddenly looking into the real possibility of him having a job, but needing a coach who can help him interact appropriately in the workplace- this is a HUGE sign of success!
I can foresee a time in the future when he will need a cell phone because he will not always be with me! That is an awesome sign of growth on his part.
He is showing so many signs of maturity and growth. Tonight alone we all sat down for dinner and he was in the basement and was taking forever. When I asked what he was doing, he told me he was doing the laundry- this is a mom's dream come true!
Then, I went out for a run, and left him to finish eating and came home to him running the dishwasher- AND this time he remembered the soap!
I am hoping beyond hope that we have come through the darkest times, but the best part is that I now know that should life get dark again, I can count on the sunshine coming back with a lot of hardwork from both of us!
Sunday, July 19, 2015
When I write, why I write, how I write
I think it is important that people understand my writing process, so that when you read my blog you don't think I am in the midst of a potential emotional crisis.
Typically by the time I am at the point of writing things down I am either over the current crisis or I am out of the midst of the crisis and writing is my way of processing. This doesn't mean that I never write when I am in the middle of a crisis, but I do try to write when I am not in the middle of the emotional moment so that I don't write things I will regret later.
Typically an issue or incident occurs, then I survive it, then I process it and then I write about it. So by the time you read it, the incident is over and there is an ending to what I have written about. I appreciate the comments of support more than you can ever know. It means the world to me to know that people are in our corner and that I have a community who understand the crazy we live in. I just don't want people worrying unnecessarily and felt it was important to let you all in on my writing process.
I have given a lot of thought recently to making my blog private or making people sign in before they read my blog, but over the years I have had people reach out and say they are living through a similar life that I never would have guessed would benefit from my blog. For that reason I don't want to make it private because that would create a stumbling block for sharing our story.
People have reached out who have family members who share David's genetic duplication, and people have reached out who have children who struggle with mental health issues and fetal alcohol syndrome. For this reason I am keeping my blog public but I do have concern that it is upsetting people recently and I am trying to be very sensitive to this as my goal is not to upset my children's teachers, or therapists or my family members or friends. This is me writing about our story from my perspective. At times my perspective and understanding of life is wrong or one sided, but also I am juggling a full plate, and so often I am dealing with multiple issues at the same time.
I am working on getting some help for myself because I realize I am currently juggling too much and feeling overwhelmed. The biggest message I want to share with you all is that I am ok- I am stressed and at times overwhelmed, but for the most part I am ok. Between raising these 3 boys, juggling school needs for them, and juggling a new self direction program for them that is supposed to make respite easier, but has truly just added a lot of work to my already full plate, there are tons of ups and downs. However, the ups are higher because i have often waited a long time for them, but that often means the downs are lower than average, but we will get through them.
Last week I read through my blog and realized what dark times we have come through. By comparison, we are doing so well. And for that I am forever thankful.
Typically by the time I am at the point of writing things down I am either over the current crisis or I am out of the midst of the crisis and writing is my way of processing. This doesn't mean that I never write when I am in the middle of a crisis, but I do try to write when I am not in the middle of the emotional moment so that I don't write things I will regret later.
Typically an issue or incident occurs, then I survive it, then I process it and then I write about it. So by the time you read it, the incident is over and there is an ending to what I have written about. I appreciate the comments of support more than you can ever know. It means the world to me to know that people are in our corner and that I have a community who understand the crazy we live in. I just don't want people worrying unnecessarily and felt it was important to let you all in on my writing process.
I have given a lot of thought recently to making my blog private or making people sign in before they read my blog, but over the years I have had people reach out and say they are living through a similar life that I never would have guessed would benefit from my blog. For that reason I don't want to make it private because that would create a stumbling block for sharing our story.
People have reached out who have family members who share David's genetic duplication, and people have reached out who have children who struggle with mental health issues and fetal alcohol syndrome. For this reason I am keeping my blog public but I do have concern that it is upsetting people recently and I am trying to be very sensitive to this as my goal is not to upset my children's teachers, or therapists or my family members or friends. This is me writing about our story from my perspective. At times my perspective and understanding of life is wrong or one sided, but also I am juggling a full plate, and so often I am dealing with multiple issues at the same time.
I am working on getting some help for myself because I realize I am currently juggling too much and feeling overwhelmed. The biggest message I want to share with you all is that I am ok- I am stressed and at times overwhelmed, but for the most part I am ok. Between raising these 3 boys, juggling school needs for them, and juggling a new self direction program for them that is supposed to make respite easier, but has truly just added a lot of work to my already full plate, there are tons of ups and downs. However, the ups are higher because i have often waited a long time for them, but that often means the downs are lower than average, but we will get through them.
Last week I read through my blog and realized what dark times we have come through. By comparison, we are doing so well. And for that I am forever thankful.
Saturday, July 11, 2015
Truth of being a special ed mom times 3
First and foremost, if you are easily offended or think this might upset you.....just stop.....you don't have to read it.
Second, if you recognize yourself or someone else in any of what I have to say......stop....realize I could live and cope with any one or 5 of these things, but all together it is too much......so if I seem too sensitive, it is because all together, for me, alone, this is too much. If that makes me appear weak, I'm sorry. If I am too sensitive to the perfect facebook world, I know that already, but it doesn't make the pain that it causes any less real.
Third, know that I had stopped writing because my writing was upsetting people. Know that since I stopped writing, I am living feeling like I am going to implode, so if I don't write I can't cope. Do I have to publicize my writing, no. If I don't publicize my writing though, no one will know some of the hell that this is. No one can understand because when you ask "how are you?' I answer "good" or give you a brief hint of what is going on. When I start to really tell you, because I think you might really have time to listen, often your eyes blank over and I assume it is too much, so I stop.
I am not trying to write to offend, but I am writing my feelings, as I feel them, as life is impacting me given all that is on my shoulders. This is not a "cry for help" or a woe is me post, but it is a "this is what it takes to be a single mom to 3 kids with special needs post, from the trenches".
Life since June
1. I planned on giving Matthew the summer off from school- sometimes a kid just needs a break, and I felt like he was in a good spot for a fun summer. I am the granddaughter of a camp director, I am the niece of 2 camp directors, I was a camp director...I believe strongly in the power of camp. I wanted my kids to have the experience of camp. I worked hard to plan for the "perfect summer" for Matthew. I spoke to the staff at both camps he was to attend. I prepped them for who he is, what he needs and we discussed how it would work.
I got a phone call from the district that I needed to make a firm decision- if he attended summer school they needed to hire a bus attendant and if he didn't, they wouldn't. That made total sense to me, so I bit the bullet and with a pit in my stomach, I decided no summer school.
Day one of camp #1- i was met with concerns and it became apparent that this may not work. I quickly shot off an email to the district begging for a summer school option and researched other camp options for Matthew. The camp was not saying "no" after one day, but I didn't have time to wait a few weeks to make a decision, I needed feedback quickly and to decide so I could create Plan B.
The District was AMAZING! They were quickly responsive and offered us a summer school program. I was beyond thankful, because I had chosen to say "no" to summer services and while it would have been hard, they could have said there was no way to add summer school for him.
I contacted another local summer camp and worked with the administration to find an option for matthew for this week- he did Blacksmithing Camp and LOVED it! it was truly incredible. My boy made a metal spoon, fork and hook and it was amazing!
Matthew finished off week 1 at the first camp, and with tears in my eyes and a heavy heart I explained to him that he would not be returning. I explained that he did nothing wrong and I held him as he cried. It was painful to hear the "why do I have special needs", "why doesn't friend X have special needs", "what did I do wrong". In reality I had no answers......The camp is about "hang time" and "loose structure" and Matthew needs structure, he needs routine. I wish this was something that could have been created for him, but the camp director in me knows that you can't make a camp program for one kid.....however the mom in me really wishes we could.
2. I attended a wonderful CSE meeting where there was laughter and happiness as we officially approved a summer program for Matthew, and we solidified his school year program. I was told the make up of the class, and we were set to go forward. I thanked everyone, and left happy. I was sad that he was heading back to summer school, because I wanted him to go to camp, but happy that the school, the district and I had worked well together and I felt supported.
Then a day later the shoe dropped- the class make up was not what was expected. The age range was larger. I panicked. I know that this was not done on purpose, and I know that everyone has Matthew's best interest at heart. I do not question this- this alone is huge growth.
However, as Matthew's mommy, I am scared. I don't want him with kids who are much older. I want him to maintain his innocence longer. I want him to be 14 while he is 14, not try to keep up with older kids. The hardest part is that I am internally often so torn inside. I know my boy needs summer school. I get that. I agree with that. However, I pictured him outside playing, swimming, laughing at camp. Then I swallowed hard and changed the picture, and now I am being asked to change it again and include summer school with much older kids.
I am putting my trust in his school. I am putting my trust in our District, I am doing this more easily than I have in a long time, my head knows this is the right choice, but I can't get my heart to stop screaming "LET HIM GO TO CAMP!" This is the internal struggle. This is no one else's fault and yet the screaming won't stop.
3. His Blacksmith program had an open house which we went to on Thursday night. I was there with my heart in my throat the whole time and tears in my eyes. My son, the one who years ago was playing with fire and scared me to death, was working with metal and fire to create pieces of true beauty. He did it with respect and amazingness. His teacher loved him, and tutored him through the entire process. He was out in the woods, in a blacksmith shop and he was just a regular 14 year old boy.
This is what he is leaving to go back to school. Nature, camp, woods, adults teaching him new skills. If only this was offered full day, he could go there, but it is only offered until 12:00. If only I didn't have to work, he could go there, but I have to work. If only......if only.....if only.
Do you see why I am crying? Do you see why this is so hard. He was typical.....I got a glimpse of my boy, in a typical setting, being typical. He learned a new skill. He succeeded. If only..........
4. David's seizures are back......I have watched him now have 6 seizures. I have watched him struggle. He takes 4 anti seizure medications, and yet the seizures are back because he is going through puberty. he is back with that cough/vomit thing he does at night, so every cough all night long I panic. He is back with the behavioral stuff that comes before a seizure, so every behavior has me worried.
He was a mess at school the other day, and I have no idea why. My best guess is he had a seizure at some point, but I wasn't there, so I don't know. All I know is he was behavioral, and then it stopped and I wasn't there.
Do you know how hard it is to be at work while your son is struggling? Focus on work, get it all done....it is all too much. I am in my office crying, and then wiping away the tears because I am at work. Work is my escape, my sanity and I love it....but it is hard to be at work when my boys need me.
5. We are working on a new program called Self Directed Services through OPWDD which is supposed to mean that I work with a broker to hire staff who can support the boys in the community gaining new skills. The broker is supposed to help me find staff and access therapies for the boys in the community. So far the broker has done nothing. She cannot seem to write an advertisement that seeks staff that is not full of typos and errors. She cannot seem to correctly manage payroll for the staff that I had already hired. it is error after error and I am monitoring everything. Instead of this being easier, it is consistently harder.
I am juggling this program for Matthew and David, and alone this could be a full time job. The support that I am supposed to have in the way of a broker needs constant monitoring.......I am not the only family struggling with this, but likely I am the only family juggling this for 2 kids as a single parent, and it is hard and exhausting. The agency and broker keep apologizing for the errors but I just need the errors to stop so that I can have help.
Hiring any new staff person to work with the boys takes 8 weeks- do you know anyone who wants to wait 8 weeks to start a new job? A part time job? Most people want to start immediately. Then for each person I have tried to hire, the hiring process with this agency has been a mess, so I am juggling the hiring of a new person who just wants to work, and until they can get through the hiring process they can't start working ........exhaustion!
6. We have hit the point that the boys are emotionally and developmentally all younger than my friends kids. My friends kids have moved on. They are beyond where we are. I knew it would happen, but I wasn't prepared for the pain. We are making new relationships, new friendships.
My kids are playing best with kindergarteners/1st graders- developmentally that is where we are. It is just hard to see people moving on, and to be standing still.
I have a 14, 11 and 8 year old and yet I can't leave the house without a babysitter. Most 14 year olds are starting to babysit, and yet mine still needs a babysitter. I am not sure I will ever adjust to that, it is just hard..
7. When people are with us, they are asking for a break, some down time from the chaos, a break from the crazy. Trust me! I hear you! I would LOVE a break. Some down time, some quiet. The difference is, you can leave, I can't.
I will never adjust to the noise, the constant chatter, the chaos. If I could create discipline to make it stop, know that I would. If you have suggestions, i am happy to listen. However, in reality, before meds kick in and after they wear off, we are left with chaos and crazy. In the middle of the day, I can hope for a little more control but even then it is iffy at best.
8. Even Jacob is really struggling. He is a child who is labeled as emotionally immature due to ADHD and globabl developmental delays. The other day we talked about relaxing on the weekend. He didn't know what a weekend was. He is 8.5 years old.
Did you actually sit down and teach your child what "weekend" means? There are so many thing he needs to be taught, that other kids just pick up on. So much that I don't know where to start. When I realize he has a gap, I fill it in, but i assumed he knew "weekend".
9. I made a decision to send Jacob to summer camp most weeks and summer school only 3 weeks. He is a kid who thrives on learning about animals and science. I needed him to have these hands on learning opportunities. Also, summer school for him is only Tuesday, Wednesday and Thursday 8:30-11:30. I work Tuesday-Friday full time over the summer. I can't leave at 11:30 to pick him up, it isn't realistic. I have no child care who can be here for him 3 days per week at 11:30, and even if I did where would he go Monday and Friday.
Given all of these pieces to the puzzle, I made the best choice I could. However, I am watching him slip backwards without school. His speech is becoming harder to understand, his math abilities are slipping. Yes, I know....tutor him......have you tried to teach a child skills at 5:30 on a beautiful summer night when all of the neighborhood kids are outside or he wants to go to the pool? I am working on it, but you know what? I want him to play....he is only a kid once! And yet again, watching him struggle breaks my heart....why can't it all just come easy?
10. I am tired. I feel like I am collapsing under the weight of all that is on my shoulders. I am dealing with my own chronic illnesses that rear their ugly heads when I am on overload. I am running as often as I can so that I can destress and feel relief, but as I run around the block I am worrying that my boys are struggling and so I am worrying as I run.
I know that these bumps will get better- things will improve with time. But as a mom to kids with special needs, am also learning that there is an underlying feeling of "this isnt what I planned". My visions of parenthood didn't include life long care for my kids who are not developing independent living skills. My vision didn't include self contained classrooms with ratios of 1:1 care. I realized the other day that I have children who require 1 adult to 1-2 kids at school, and I am parenting 3 of them alone. It is a lot to juggle.
And yet, when we are out in a kayak, or on the beach creating sand castles, I love every minute of our life! I get to keep my boys little while yours are growing up. I get boys with such innocence while yours are becoming teenagers....so there are gifts to this life, but there is also pain, and I guess right now the pain feels more raw than normal.
This is the life of a mom to 3 kids with special needs. This is life raw......this is our world that is not posted or talked about on facebook.
Second, if you recognize yourself or someone else in any of what I have to say......stop....realize I could live and cope with any one or 5 of these things, but all together it is too much......so if I seem too sensitive, it is because all together, for me, alone, this is too much. If that makes me appear weak, I'm sorry. If I am too sensitive to the perfect facebook world, I know that already, but it doesn't make the pain that it causes any less real.
Third, know that I had stopped writing because my writing was upsetting people. Know that since I stopped writing, I am living feeling like I am going to implode, so if I don't write I can't cope. Do I have to publicize my writing, no. If I don't publicize my writing though, no one will know some of the hell that this is. No one can understand because when you ask "how are you?' I answer "good" or give you a brief hint of what is going on. When I start to really tell you, because I think you might really have time to listen, often your eyes blank over and I assume it is too much, so I stop.
I am not trying to write to offend, but I am writing my feelings, as I feel them, as life is impacting me given all that is on my shoulders. This is not a "cry for help" or a woe is me post, but it is a "this is what it takes to be a single mom to 3 kids with special needs post, from the trenches".
Life since June
1. I planned on giving Matthew the summer off from school- sometimes a kid just needs a break, and I felt like he was in a good spot for a fun summer. I am the granddaughter of a camp director, I am the niece of 2 camp directors, I was a camp director...I believe strongly in the power of camp. I wanted my kids to have the experience of camp. I worked hard to plan for the "perfect summer" for Matthew. I spoke to the staff at both camps he was to attend. I prepped them for who he is, what he needs and we discussed how it would work.
I got a phone call from the district that I needed to make a firm decision- if he attended summer school they needed to hire a bus attendant and if he didn't, they wouldn't. That made total sense to me, so I bit the bullet and with a pit in my stomach, I decided no summer school.
Day one of camp #1- i was met with concerns and it became apparent that this may not work. I quickly shot off an email to the district begging for a summer school option and researched other camp options for Matthew. The camp was not saying "no" after one day, but I didn't have time to wait a few weeks to make a decision, I needed feedback quickly and to decide so I could create Plan B.
The District was AMAZING! They were quickly responsive and offered us a summer school program. I was beyond thankful, because I had chosen to say "no" to summer services and while it would have been hard, they could have said there was no way to add summer school for him.
I contacted another local summer camp and worked with the administration to find an option for matthew for this week- he did Blacksmithing Camp and LOVED it! it was truly incredible. My boy made a metal spoon, fork and hook and it was amazing!
Matthew finished off week 1 at the first camp, and with tears in my eyes and a heavy heart I explained to him that he would not be returning. I explained that he did nothing wrong and I held him as he cried. It was painful to hear the "why do I have special needs", "why doesn't friend X have special needs", "what did I do wrong". In reality I had no answers......The camp is about "hang time" and "loose structure" and Matthew needs structure, he needs routine. I wish this was something that could have been created for him, but the camp director in me knows that you can't make a camp program for one kid.....however the mom in me really wishes we could.
2. I attended a wonderful CSE meeting where there was laughter and happiness as we officially approved a summer program for Matthew, and we solidified his school year program. I was told the make up of the class, and we were set to go forward. I thanked everyone, and left happy. I was sad that he was heading back to summer school, because I wanted him to go to camp, but happy that the school, the district and I had worked well together and I felt supported.
Then a day later the shoe dropped- the class make up was not what was expected. The age range was larger. I panicked. I know that this was not done on purpose, and I know that everyone has Matthew's best interest at heart. I do not question this- this alone is huge growth.
However, as Matthew's mommy, I am scared. I don't want him with kids who are much older. I want him to maintain his innocence longer. I want him to be 14 while he is 14, not try to keep up with older kids. The hardest part is that I am internally often so torn inside. I know my boy needs summer school. I get that. I agree with that. However, I pictured him outside playing, swimming, laughing at camp. Then I swallowed hard and changed the picture, and now I am being asked to change it again and include summer school with much older kids.
I am putting my trust in his school. I am putting my trust in our District, I am doing this more easily than I have in a long time, my head knows this is the right choice, but I can't get my heart to stop screaming "LET HIM GO TO CAMP!" This is the internal struggle. This is no one else's fault and yet the screaming won't stop.
3. His Blacksmith program had an open house which we went to on Thursday night. I was there with my heart in my throat the whole time and tears in my eyes. My son, the one who years ago was playing with fire and scared me to death, was working with metal and fire to create pieces of true beauty. He did it with respect and amazingness. His teacher loved him, and tutored him through the entire process. He was out in the woods, in a blacksmith shop and he was just a regular 14 year old boy.
This is what he is leaving to go back to school. Nature, camp, woods, adults teaching him new skills. If only this was offered full day, he could go there, but it is only offered until 12:00. If only I didn't have to work, he could go there, but I have to work. If only......if only.....if only.
Do you see why I am crying? Do you see why this is so hard. He was typical.....I got a glimpse of my boy, in a typical setting, being typical. He learned a new skill. He succeeded. If only..........
4. David's seizures are back......I have watched him now have 6 seizures. I have watched him struggle. He takes 4 anti seizure medications, and yet the seizures are back because he is going through puberty. he is back with that cough/vomit thing he does at night, so every cough all night long I panic. He is back with the behavioral stuff that comes before a seizure, so every behavior has me worried.
He was a mess at school the other day, and I have no idea why. My best guess is he had a seizure at some point, but I wasn't there, so I don't know. All I know is he was behavioral, and then it stopped and I wasn't there.
Do you know how hard it is to be at work while your son is struggling? Focus on work, get it all done....it is all too much. I am in my office crying, and then wiping away the tears because I am at work. Work is my escape, my sanity and I love it....but it is hard to be at work when my boys need me.
5. We are working on a new program called Self Directed Services through OPWDD which is supposed to mean that I work with a broker to hire staff who can support the boys in the community gaining new skills. The broker is supposed to help me find staff and access therapies for the boys in the community. So far the broker has done nothing. She cannot seem to write an advertisement that seeks staff that is not full of typos and errors. She cannot seem to correctly manage payroll for the staff that I had already hired. it is error after error and I am monitoring everything. Instead of this being easier, it is consistently harder.
I am juggling this program for Matthew and David, and alone this could be a full time job. The support that I am supposed to have in the way of a broker needs constant monitoring.......I am not the only family struggling with this, but likely I am the only family juggling this for 2 kids as a single parent, and it is hard and exhausting. The agency and broker keep apologizing for the errors but I just need the errors to stop so that I can have help.
Hiring any new staff person to work with the boys takes 8 weeks- do you know anyone who wants to wait 8 weeks to start a new job? A part time job? Most people want to start immediately. Then for each person I have tried to hire, the hiring process with this agency has been a mess, so I am juggling the hiring of a new person who just wants to work, and until they can get through the hiring process they can't start working ........exhaustion!
6. We have hit the point that the boys are emotionally and developmentally all younger than my friends kids. My friends kids have moved on. They are beyond where we are. I knew it would happen, but I wasn't prepared for the pain. We are making new relationships, new friendships.
My kids are playing best with kindergarteners/1st graders- developmentally that is where we are. It is just hard to see people moving on, and to be standing still.
I have a 14, 11 and 8 year old and yet I can't leave the house without a babysitter. Most 14 year olds are starting to babysit, and yet mine still needs a babysitter. I am not sure I will ever adjust to that, it is just hard..
7. When people are with us, they are asking for a break, some down time from the chaos, a break from the crazy. Trust me! I hear you! I would LOVE a break. Some down time, some quiet. The difference is, you can leave, I can't.
I will never adjust to the noise, the constant chatter, the chaos. If I could create discipline to make it stop, know that I would. If you have suggestions, i am happy to listen. However, in reality, before meds kick in and after they wear off, we are left with chaos and crazy. In the middle of the day, I can hope for a little more control but even then it is iffy at best.
8. Even Jacob is really struggling. He is a child who is labeled as emotionally immature due to ADHD and globabl developmental delays. The other day we talked about relaxing on the weekend. He didn't know what a weekend was. He is 8.5 years old.
Did you actually sit down and teach your child what "weekend" means? There are so many thing he needs to be taught, that other kids just pick up on. So much that I don't know where to start. When I realize he has a gap, I fill it in, but i assumed he knew "weekend".
9. I made a decision to send Jacob to summer camp most weeks and summer school only 3 weeks. He is a kid who thrives on learning about animals and science. I needed him to have these hands on learning opportunities. Also, summer school for him is only Tuesday, Wednesday and Thursday 8:30-11:30. I work Tuesday-Friday full time over the summer. I can't leave at 11:30 to pick him up, it isn't realistic. I have no child care who can be here for him 3 days per week at 11:30, and even if I did where would he go Monday and Friday.
Given all of these pieces to the puzzle, I made the best choice I could. However, I am watching him slip backwards without school. His speech is becoming harder to understand, his math abilities are slipping. Yes, I know....tutor him......have you tried to teach a child skills at 5:30 on a beautiful summer night when all of the neighborhood kids are outside or he wants to go to the pool? I am working on it, but you know what? I want him to play....he is only a kid once! And yet again, watching him struggle breaks my heart....why can't it all just come easy?
10. I am tired. I feel like I am collapsing under the weight of all that is on my shoulders. I am dealing with my own chronic illnesses that rear their ugly heads when I am on overload. I am running as often as I can so that I can destress and feel relief, but as I run around the block I am worrying that my boys are struggling and so I am worrying as I run.
I know that these bumps will get better- things will improve with time. But as a mom to kids with special needs, am also learning that there is an underlying feeling of "this isnt what I planned". My visions of parenthood didn't include life long care for my kids who are not developing independent living skills. My vision didn't include self contained classrooms with ratios of 1:1 care. I realized the other day that I have children who require 1 adult to 1-2 kids at school, and I am parenting 3 of them alone. It is a lot to juggle.
And yet, when we are out in a kayak, or on the beach creating sand castles, I love every minute of our life! I get to keep my boys little while yours are growing up. I get boys with such innocence while yours are becoming teenagers....so there are gifts to this life, but there is also pain, and I guess right now the pain feels more raw than normal.
This is the life of a mom to 3 kids with special needs. This is life raw......this is our world that is not posted or talked about on facebook.
Saturday, May 16, 2015
Special Olympics All Grown Up
I have been struggling a lot recently with panic and anxiety. It is not something I think people think of when they see me, and I work hard to cover it, but recently it has taken over a little. Upon walking into Matthew's school for a meeting, I could hardly breathe, it was a response I was totally shocked by. I basically had to focus on breathing and holding back tears most of the meeting, not something that is typical for me at all.
On Wednesday I found out that Matthew had a Special Olympics Statewide Basketball Tournament that started at 8:30 Saturday morning, and all I could think of was, "I can't possibly do this. I don't want to, you can't make me." As I was talking to the coach, I talked of all of the struggles;
* It's 30 minutes from home- some teams were driving 5 hours
* It's too early in the morning- really? Because Matthew will be up.
* It's too long a day for the other two boys- have his respite worker bring him
Essentially, there was no good enough excuse to avoid me going to this tournament. I had to face my fears, put my big girl panties on, and go and see what this Special Olympics Tournament was all about.
I was afraid, true deep pit of my stomach fear. Matthew is a great athlete and loves basketball. He can shoot a 3 point shot with amazing accuracy when he is just shooting hoops at home. However, he can't play with a team of typical peers because once the action of the game starts he can't focus and follow the ball. His basketball team is made up of mostly players in the age range of 25-40, and their reality is a little too real for me. They are all men who struggle with their own disabilities, both emotional, and developmental.
It is this reality that had me wanting to avoid the tournament. I try hard to live life in the moment, dealing with Matthew at the age of 13. I have no idea what will happen between now and when he is 21, and thinking about it is too much for me, so I live in the moment. However, being surrounded by his teammates, I have to face his future.
* there are men on his team who are married.
* there are men on his team who live in group homes
* there are men on his team who are dependent on non family members for their care
These men are very happy, but to me it is a lot of reality, and not the reality most of us dream of. It is not the white picket fence, 2.2 children, happily ever after. However, it is their happily ever after!
They are a true team who enjoy their time together. They have friendships. They have camaraderie, and they have an intense love of basketball!
On the other side, most can't do so many of the independent tasks of living as an adult. They can't balance their checkbook. They can't manage their finances. They can't drive.
They are reliant on agencies and staff to do most of the things that adults do independently. While some of these agencies are made up of awesome individuals, and some staff are incredible, there is still a reality that a paid person is responsible for helping these guys with so many things that we all take for granted.
For me this tournament was like facing Matthew and David's future realities all at once. I couldn't picture what this tournament would look like. How would these guys cope in a big tournament? How would Matthew cope? What would it look like.
I decided that I could not let my fear keep me from going to this tournament, so I had to hold myself accountable. I did that by posting my fears on Facebook so that my friends would ensure that I took Matthew and faced my anxiety head on. I made a plan for Matthew's respite worker to come at 7:45 to pick Matthew up, so that I could go a little slower with the little boys, and so that she would be there to support Matthew while I helped the little boys. She is an awesome cheer leader for Matthew and a great support for me!
Peggy, Matthew's respite worker, kept in touch with me by phone to keep me posted on the day's events. At 10:30 Matthew's games had still not started, there was no definite start time on the horizon, but I was actually finding myself needing to be there with my son. My anxiety turned into excitement, and I was ready to go see my boy and just focus on his playing basketball.
We arrived at the tournament just as Matthew's team took to the court for their first game and it was awesome to see them play. They struggled a little with finding their footing as a team, and barely scored at all in their first 2 games. However, the more they played together, the better they played.
In the end, I found myself becoming the cheerleading mom that I dreamed of being as I cheered my boy on as he played 4 basketball games. He had some awesome shots, he had amazing team spirit and he made me super proud!
At the end of the day when I asked if he wanted to play again next year he said he wasn't sure because there was too much swearing and too much roughness! My basketball giant, playing with the men, but still a boy at heart!
On Wednesday I found out that Matthew had a Special Olympics Statewide Basketball Tournament that started at 8:30 Saturday morning, and all I could think of was, "I can't possibly do this. I don't want to, you can't make me." As I was talking to the coach, I talked of all of the struggles;
* It's 30 minutes from home- some teams were driving 5 hours
* It's too early in the morning- really? Because Matthew will be up.
* It's too long a day for the other two boys- have his respite worker bring him
Essentially, there was no good enough excuse to avoid me going to this tournament. I had to face my fears, put my big girl panties on, and go and see what this Special Olympics Tournament was all about.
I was afraid, true deep pit of my stomach fear. Matthew is a great athlete and loves basketball. He can shoot a 3 point shot with amazing accuracy when he is just shooting hoops at home. However, he can't play with a team of typical peers because once the action of the game starts he can't focus and follow the ball. His basketball team is made up of mostly players in the age range of 25-40, and their reality is a little too real for me. They are all men who struggle with their own disabilities, both emotional, and developmental.
It is this reality that had me wanting to avoid the tournament. I try hard to live life in the moment, dealing with Matthew at the age of 13. I have no idea what will happen between now and when he is 21, and thinking about it is too much for me, so I live in the moment. However, being surrounded by his teammates, I have to face his future.
* there are men on his team who are married.
* there are men on his team who live in group homes
* there are men on his team who are dependent on non family members for their care
These men are very happy, but to me it is a lot of reality, and not the reality most of us dream of. It is not the white picket fence, 2.2 children, happily ever after. However, it is their happily ever after!
They are a true team who enjoy their time together. They have friendships. They have camaraderie, and they have an intense love of basketball!
On the other side, most can't do so many of the independent tasks of living as an adult. They can't balance their checkbook. They can't manage their finances. They can't drive.
They are reliant on agencies and staff to do most of the things that adults do independently. While some of these agencies are made up of awesome individuals, and some staff are incredible, there is still a reality that a paid person is responsible for helping these guys with so many things that we all take for granted.
For me this tournament was like facing Matthew and David's future realities all at once. I couldn't picture what this tournament would look like. How would these guys cope in a big tournament? How would Matthew cope? What would it look like.
I decided that I could not let my fear keep me from going to this tournament, so I had to hold myself accountable. I did that by posting my fears on Facebook so that my friends would ensure that I took Matthew and faced my anxiety head on. I made a plan for Matthew's respite worker to come at 7:45 to pick Matthew up, so that I could go a little slower with the little boys, and so that she would be there to support Matthew while I helped the little boys. She is an awesome cheer leader for Matthew and a great support for me!
Peggy, Matthew's respite worker, kept in touch with me by phone to keep me posted on the day's events. At 10:30 Matthew's games had still not started, there was no definite start time on the horizon, but I was actually finding myself needing to be there with my son. My anxiety turned into excitement, and I was ready to go see my boy and just focus on his playing basketball.
We arrived at the tournament just as Matthew's team took to the court for their first game and it was awesome to see them play. They struggled a little with finding their footing as a team, and barely scored at all in their first 2 games. However, the more they played together, the better they played.
In the end, I found myself becoming the cheerleading mom that I dreamed of being as I cheered my boy on as he played 4 basketball games. He had some awesome shots, he had amazing team spirit and he made me super proud!
At the end of the day when I asked if he wanted to play again next year he said he wasn't sure because there was too much swearing and too much roughness! My basketball giant, playing with the men, but still a boy at heart!
Sunday, March 29, 2015
thoughts on schooling with multiple children with special needs
It is IEP time again, and no matter how much I gear myself up for this time each year, there are always new surprises and new stresses. here are the things that I am working on currently for each child.....what shocks me is how many times what I am working on for one child is in direct contrast to what I need to fight for when trying to help another one of my boys.....if that's not enough to make your head spin, well, you are a better person than I am.
Matthew:
1. Recently was in the room while a child was restrained. This is against the regulations for restraining a child, which state it must be done away from other children. The child was restrained in front of the classroom door, so no other kids could leave. I was not told of the restraint by anyone but Matthew. Given this, and so many other issues this year, the Director of Special Education, an advocate for Matthew, and a psychologist hired by the school district all went for visits last week. Each went at different times. Each saw a quiet, well run school environment. The only issue that was raised was that Matthew is physically locked INTO his classroom.
One change that occurred in response to my upset about not hearing of the restraint happening in front of Matthew, is that I now get a daily email....in last week's emails alone I was told of:
1. 3 classroom crisis which involved support crisis workers being called in. These were crisis of other children, but the chaos affects matthew.
2. 1 child going AWOL- leaving the classroom without permission
3. 1 outburst from Matthew.
How 3 professionals went for a visit and all was calm, I wish I knew, when these things occurred in the same week of their visits. While i trust that they saw the school, and appreciate that the classroom Matthew is in, is a decent classroom, I am always going to be sad that he deals with these chaotic experiences, and i will never know the impact they have on him.
That said, the increased communication is helping and having advocates who support that the communication is a MUST feels like a giant step in the right direction.
2. I really want Matthew in a typical school environment. That said, I understand he is simply not ready for it, and the typical school is likely not ready for him, so it will not necessarily make sense. However, I was told by the Director of Special Education that the single best environment for students is in district programming, when we talked about David, and I can't get this statement out of my head just because I am dealing with Matthew.
She was clear when she said that the best programming is in district, that this did not mean Bethlehem specifically, but that in district in most school districts is far superior to out of district programming.
3. I really feel like Matthew is a child who would thrive with the extracurricular programs that school districts offer children.
* He would thrive in band
* he would excel in a sports program- even a freshman team or modified would be awesome
* home economics, shop, etc....would all be awesome for him
* If he can't have access to these mainstream programs, how about pet therapy? music therapy? art therapy?
David:
1. It is being recommended that David stay in 5th grade next year. I like this because it gives him another year in this amazing environment. However, in talking with the psychologist mentioned above in regards to Matthew repeating 8th grade, I was told that retention is never a good idea for children with special needs.
I am 1 mom, parenting 3 children with special needs. How is it that these rules are black and white and yet I cannot apply them to my 3 children?
2. David is connected with the current mainstream 5th graders at his Elementary school, they really look out for him. These kids will go on to 6th grade in the Fall. How will David do without them. Not that they are peers to him, but rather they are kids who treat him with such love and kindness and caring, and it is a nice group of boys......what if he doesn't get that type of group next year?
3. The Psychologist and other parents of middle schoolers have been saying that our mainstream programs are not ready for children with special needs, that there is often inappropriate responses to
"discipline" issues, and especially for David where his "behavior" is so closely connected to his seizures, it is a challenge to trust that by holding him in 5th grade, that the middle school will really be ready for him next year. Can't I just keep him in this class until he is 21?
4. Yes, I know that in item 2 I started off asking if he should stay in 5th grade again, and now I am saying he should stay there until he is 21......do you see why I am so confused???????
Jacob:
1. Jacob is in a cotaught class this year- and has really needed the support but thrives with the support. Given that he thrives with this support, he is on the cusp of losing the support....I hate that a child has to fail to get help that they need.
2. Jacob doesnt love leaving the classroom, so it is being recommended that he have fewer outside of class services...again, while he may not love it, in 3rd grade he can still leave class and it is not as big a crisis as missing class time in the higher grades, so if he needs OT and Speech...in my world better now than later.
3. Jacob is getting speech 4 times a week next year, but is not being referred for summer speech....that seems assanine to me....the child struggles to say many multiple syllable words clearly, which is super cute, but not when he is 20......10 weeks without speech over the summer seems like asking for trouble....do I really have to be the parent that fights for this? Can't the speech therapist see why this is a problem? So for now, i am keeping a log of all of the words he can't say, because THAT has made for a fun weekend!
Really, the speech therapist can't keep a log? She is working on "drilling him". In 1 word situations, he can say most things, however most of us speak in more than 1 word utterances.....maybe the SPEECH therapist could have a conversation with him and gather data? I gave her the example that he calls it a "mote control" instead of a "remote control" because that isn't a "school word" she says she wouldn't have known that. Ummmmmm talk to him for a few minutes......this is not the only word he leaves off the first syllable of......cute? yes.,.,,,,,,functional? Maybe not so much!
Matthew:
1. Recently was in the room while a child was restrained. This is against the regulations for restraining a child, which state it must be done away from other children. The child was restrained in front of the classroom door, so no other kids could leave. I was not told of the restraint by anyone but Matthew. Given this, and so many other issues this year, the Director of Special Education, an advocate for Matthew, and a psychologist hired by the school district all went for visits last week. Each went at different times. Each saw a quiet, well run school environment. The only issue that was raised was that Matthew is physically locked INTO his classroom.
One change that occurred in response to my upset about not hearing of the restraint happening in front of Matthew, is that I now get a daily email....in last week's emails alone I was told of:
1. 3 classroom crisis which involved support crisis workers being called in. These were crisis of other children, but the chaos affects matthew.
2. 1 child going AWOL- leaving the classroom without permission
3. 1 outburst from Matthew.
How 3 professionals went for a visit and all was calm, I wish I knew, when these things occurred in the same week of their visits. While i trust that they saw the school, and appreciate that the classroom Matthew is in, is a decent classroom, I am always going to be sad that he deals with these chaotic experiences, and i will never know the impact they have on him.
That said, the increased communication is helping and having advocates who support that the communication is a MUST feels like a giant step in the right direction.
2. I really want Matthew in a typical school environment. That said, I understand he is simply not ready for it, and the typical school is likely not ready for him, so it will not necessarily make sense. However, I was told by the Director of Special Education that the single best environment for students is in district programming, when we talked about David, and I can't get this statement out of my head just because I am dealing with Matthew.
She was clear when she said that the best programming is in district, that this did not mean Bethlehem specifically, but that in district in most school districts is far superior to out of district programming.
3. I really feel like Matthew is a child who would thrive with the extracurricular programs that school districts offer children.
* He would thrive in band
* he would excel in a sports program- even a freshman team or modified would be awesome
* home economics, shop, etc....would all be awesome for him
* If he can't have access to these mainstream programs, how about pet therapy? music therapy? art therapy?
David:
1. It is being recommended that David stay in 5th grade next year. I like this because it gives him another year in this amazing environment. However, in talking with the psychologist mentioned above in regards to Matthew repeating 8th grade, I was told that retention is never a good idea for children with special needs.
I am 1 mom, parenting 3 children with special needs. How is it that these rules are black and white and yet I cannot apply them to my 3 children?
2. David is connected with the current mainstream 5th graders at his Elementary school, they really look out for him. These kids will go on to 6th grade in the Fall. How will David do without them. Not that they are peers to him, but rather they are kids who treat him with such love and kindness and caring, and it is a nice group of boys......what if he doesn't get that type of group next year?
3. The Psychologist and other parents of middle schoolers have been saying that our mainstream programs are not ready for children with special needs, that there is often inappropriate responses to
"discipline" issues, and especially for David where his "behavior" is so closely connected to his seizures, it is a challenge to trust that by holding him in 5th grade, that the middle school will really be ready for him next year. Can't I just keep him in this class until he is 21?
4. Yes, I know that in item 2 I started off asking if he should stay in 5th grade again, and now I am saying he should stay there until he is 21......do you see why I am so confused???????
Jacob:
1. Jacob is in a cotaught class this year- and has really needed the support but thrives with the support. Given that he thrives with this support, he is on the cusp of losing the support....I hate that a child has to fail to get help that they need.
2. Jacob doesnt love leaving the classroom, so it is being recommended that he have fewer outside of class services...again, while he may not love it, in 3rd grade he can still leave class and it is not as big a crisis as missing class time in the higher grades, so if he needs OT and Speech...in my world better now than later.
3. Jacob is getting speech 4 times a week next year, but is not being referred for summer speech....that seems assanine to me....the child struggles to say many multiple syllable words clearly, which is super cute, but not when he is 20......10 weeks without speech over the summer seems like asking for trouble....do I really have to be the parent that fights for this? Can't the speech therapist see why this is a problem? So for now, i am keeping a log of all of the words he can't say, because THAT has made for a fun weekend!
Really, the speech therapist can't keep a log? She is working on "drilling him". In 1 word situations, he can say most things, however most of us speak in more than 1 word utterances.....maybe the SPEECH therapist could have a conversation with him and gather data? I gave her the example that he calls it a "mote control" instead of a "remote control" because that isn't a "school word" she says she wouldn't have known that. Ummmmmm talk to him for a few minutes......this is not the only word he leaves off the first syllable of......cute? yes.,.,,,,,,functional? Maybe not so much!
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