tag:blogger.com,1999:blog-10974353870184653862023-11-16T06:50:05.488-08:00LandonKim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.comBlogger159125tag:blogger.com,1999:blog-1097435387018465386.post-72786038054989904762016-02-27T09:56:00.001-08:002016-02-27T09:56:32.953-08:00So what if there are two?Alex and I attended a dinner put on last night by the boys' school for parents of kids with special needs. There was a couple who had a 36 year old daughter with Rett's syndrome, which is a severe impairment, lifelong. They spoke about their journey, things they helped, and how they have coped. It was always interesting. We sit among many different people. There were people there with kids who do not sit up, do not walk, and will require lifelong care. Alex is always a positive person; he tries to remind me that our boys should get better, that they should get jobs, get married if they want to, etc. God, I hope so. Alex finds it hard to relate to those who have kids with severe disabilities. I just find it terrifying. So they spoke A LOT about siblings, and the value of siblings, and how important siblings are for kids with disabilities, as it creates a normal life. It requires the disabled sibling to be with typical kids, and may have to get out in public, participate in activities they may otherwise avoid. Very interesting. Then there is us. We have two kids with special needs. It feels unlucky, unfair, and to be honest, it totally sucks. One thing I hate is when people say there will be a positive or this child will change you. I honestly would never ask my boys to have to struggle so I can change, or so I can better myself. I could have done that without a disability. Very annoying. The couple said to me "I can't imagine two kids with needs." I was thinking to myself "I don't want to imagine your existence either." I guess no matter what it is hard. I am still thinking about a third child. I am not sure. It would be amazing to have a typical child. It would be amazing to have any child. Each of my boys benefits greatly from the other child. They learn a lot from each. I guess we will see.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-82292818900965882062016-02-12T08:46:00.000-08:002016-02-12T08:46:42.012-08:00Where have I been?Well, it got harder to write. I just am not sure exactly what to say. We progress at a snail's pace. Every new sound is totally amazing and worth the work, but it is slow. Landon is saying yea and no all the time now, and I am so blessed. Sometimes I pinch myself to really hear that it is true. He is saying mama and do and go and me and more and all done and hi (hi at school only). He is progressing, but there is so much more work to do. We are still working on potty training and play skills and fine motor. I sent an email out to try to find a private OT since I do think we need more OT. Fine motor skills impact play. So we will see.<br />
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Logi will I am sure be diagnosed with Apraxia in April. He is speaking a little more. He is saying mama, more, and no, not consistently and coming and going. He is delayed overall. <br />
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So damn cute and very frustrating. I still forget sometimes that this is my life. To me, they are not special ed- they are just perfect. I try to remember that.<br />
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and I pray all the time.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com2tag:blogger.com,1999:blog-1097435387018465386.post-33260319831748988542015-12-28T09:51:00.001-08:002015-12-28T09:51:35.851-08:00haven't posted as muchI am still here. I am usually thinking what more could I do? Is there something i am missing? I really, really wish we had a CASANA trained SLP nearby, because I would love an expert involved; however, Landon has good school SLPs and me, and I think speech is really, really hard for him. BUT I do see progress. He is using a lot more signs. He is trying very hard to imitate. He stops, looks at your mouth, and tries. He really struggles to imitate. He is saying "no" now everyday, not every time, but every day. He amazes me. His gross motor skills are coming along so well. We went to an indoor huge play area today, and I don't think anyone knew he had a disability. He was quick, strong, appropriate, and did everything everyone else did. We are working hard on his speech and his play skills. I am proud of Landon.<br />
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Logi is using his iPAD well at school and I just bought him his own and the school paid for the app. Now I have 2 little ones with Ipads. Amazing. Not what I expected, but I would not give them back if I could.<br />
So we press on.<br />
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I promise to write more soon,<br />
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meKim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-43722775206931855112015-10-28T11:36:00.002-07:002015-10-28T11:36:50.138-07:00this is so hardThis journey is so up and down, but if there was a trajectory towards up, man, this would be easier. Logi is moving up now. He can use a cup, a spoon, and is imitating his peers. He is very social. He IS SO FAR BEHIND on Language-- so so so far, much further than Landon at this age, but yet, there is progress, so there is not as much worry. Weird right? He does not point, but he tries anything and isn't so afraid. <br />
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Landon is so frustrated. Being hit is becoming a constant thing. We have the IPAD, signs, pecs, everything, but it doesn't say what he wants to say, and he is hitting. He goes to time out and sobs. It is a sick cycle. I had to stay home from work today because I had a migraine because I cried watching him in school yesterday, cried in a meeting with his support teacher, etc. She said- he is making progress.... to me, it is not enough. It is so not enough. I am going into high strung mode now, but i don't know what to do. It feels like he is slipping through my fingers and I can't help him. He is there all day now, and you pray school is the best, right? It's scary.<br />
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It has been a stressful week.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com3tag:blogger.com,1999:blog-1097435387018465386.post-11501123107210204762015-10-18T15:50:00.000-07:002015-10-18T15:50:14.029-07:00When there is really nothing left to saySometimes it is hard to write here. Months go by without any huge progress, yet something here has changed. If I could do anything right now besides be an SLP, I would be a grief counselor. I am fascinated by the process- I feel I have a lot to offer, and I really benefited from that kind of support when my mom died. So my progress is acceptance. I have realized I have accepted I have two kids "with needs." That does not mean there are not days of denial, or cringing thinking about a vaccine, or getting a pedicure when pregnant, or something like that- it does happen. I have to just block it out, think of another person who did that and their child did not need services, and then I move on. Denial, is not so much anymore. I am aware of their needs, but most of the time, I see them as pretty typical little boys. They fight, they hug, they love me, they love each other, and they love to be outside. They are just little boys afterall. I did the bargaining too, and I still have most people with kids hidden on fb, and I realize that is ok. Sometimes the bragging is just too much for me. I don't need to explain that to anyone. So where is the acceptance? The acceptance is knowing they both have apraxia. Logan has hearing loss also, and Landon has sensory processing disorder. Otherwise, the disorders are similar. They both want to learn and want to be right with the other kids. I think this disorder was in place when they were just little cells, little cells I loved so so much. I am aware that progress is slow, but I am also aware that there is nothing else we can do, nothing. So what is left? for me- to enjoy them, to laugh with them, love them, and remember that one day, everything will be just as God planned it. That has helped me a lot. So it still hurts, I still cry anytime I talk about them and their struggles. It still feels so unfair and difficult; however, I do know that no one else could do this as well as me. And that feels good, like I am giving the boys the best shot at everything possible, and that God picked them for me. There is really nothing better than knowing that life is going just as it was supposed to... not by my choice, but by someone who really has my best interest in mind somehow and I have to trust that. I will never, ever give up on the possibilities of my boys. I have to accept that we have struggles, but I also have to accept that we take a deep breath, and enjoy the ride, tears, laughter, too much therapy, and all.... <3Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-32169067136017990772015-09-15T12:13:00.002-07:002015-09-15T12:13:47.585-07:00Day 2 of schoolLandon is a champ. He goes to school. He cannot speak. He tries so hard, but there he is, everyday. Therapy after therapy. One thing I notice once you become a SN parent, is someone will say, "oh he did great." and I immediately think, are you saying for Landon or do you mean for all children? I want him to be like the others in what he can do and achieve. One day he will, but it's difficult. I just pray for something to make a difference...<br />
something.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-68350965266238688692015-08-26T12:06:00.000-07:002015-08-26T12:06:08.269-07:00Please talk!!!Ugh, summer is winding down, and we are not talking yet. I guess that is it. We are just not. We stay the same. I still think there is nothing more I can do, but I will keep thinking. I have to look into essential oils. I don't know. i am just praying somehow, they can speak, someday.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com1tag:blogger.com,1999:blog-1097435387018465386.post-50018414052715702062015-08-21T11:50:00.004-07:002015-08-21T11:50:44.554-07:00When it is not just a home We have to move. I have been sad thinking about this, and my eyes have welled up in tears often. I don't want to move. I love my house, I love my neighborhood, I love my city. I know I am not abandoning the city by moving to the suburbs, but I love to say that I live in city, that I can walk everywhere, that I feel very safe here, etc. I love the way our neighborhood is always out and about, seeing everyone, that we look out for each other, that we have weekly neighborhood meetings. I love all of that. i am not a suburbs girl. I know that I have to move before the kids start school, because the behaviors have gotten bad in our schools, and because my kids would not get the services that they could get elsewhere. I do know that. Of course, I had a dream to go to private schools, and that's not it now. This is a hard time for me. I hate change. i hate to uproot the kids. Where else can we walk to church, the park, to get ice cream, the library, the store, to see family, etc? I am praying God will help me through this.... deep breath and gotta do what is best for the boys.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com2tag:blogger.com,1999:blog-1097435387018465386.post-5379427366231508212015-07-27T11:38:00.000-07:002015-07-27T11:38:09.247-07:00AppreciationI am a person who needs appreciation, who thrives on it, be it seeing something, noticing, saying or doing something that says, "hey, i see what you do and who you are." I have been in counseling since March. I feel like a lot of my own grief is due to the fact that I am not raising typical little boys, and this is not a typical way to start out being a mom. One day i hope they know I would never change them for anything, and I am so proud of who they are, no matter. One day, I do think they will be able to say "thank you mom" for everything I have given up and done for them. I don't need them to notice though. I will never stop doing everything for my boys, and i remember it's not their fault that they are here, struggling; they did not ask to be born, and i am doing my best to protect them from pain and to feel some success. I think that is true of any parent. I pray that one day they are happy they are on this earth, and i don't want them to feel like it was always so much pain. I remember my mom wrote that in her journal to me, saying I didn't want your childhood to be painful like mine. I remember no pain in my childhood and it was perfect to me, even where maybe as parents, my parents thought it needed or lacked something. Not to me. My boys are loved and I know they know that. Landon waking up and smiling a huge smile because I am waiting at his gate and throwing himself on me is all I need. Logi smiling that cheesy grin, running at me, and patting my back, is my everything. My boys are my every breath. I am so heartbroken that they can't speak. It's hard to put into words. It kills me. But what choice is there? the only choice is to sacrifice to get them help and pray. and to never, ever give up. And I do that, knowing and believing that God has a plan, and has this all figured out for me. I believe that somewhere. Right now, I am not angry at God. I do get frustrated at Him for giving this to me. I am not a person who wants to be in this. I would have like a 10 year reprieve from pain, but i am strong, because my mom made sure I was that way, and I can do it. I really can do.<br />
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The lack of emotional support and appreciation from my husband is what really hurts. There is so little, and I don't think he gets it. I have talked about it with him so many times. I don't think it is that he does not want to get it; I just think he honestly cannot and just isn't invested enough to get help to figure out how he can. He brushes things off without any thoughts. He will say things and it does not occur to him, that they hurt, and he just continues on. It's so hard for me to understand. It is draining. I am in a hard place right now with this. I am in individual counseling, so that is good for me, and I can figure out a plan if I need to.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-56885505034619236342015-07-25T06:57:00.001-07:002015-07-25T06:57:34.225-07:00STUCKWe read a lot of books about stuck. One Duck Stuck is one of Landon's favorites and then Sheep in a Jeep, where they get stuck again. We are stuck too.<br />
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I think it's just part of this apraxia, but the progress moves so slowly, that you work on the same things over and over and over. <br />
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When Landon was 2, I was working on blowing out candles. He will be 4, and he can't do it yet. He loved Mickey Mouse at 2- that was the theme to his party. He still loves mickey. Is that bad? I don't know. <br />
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He knew all his shapes at 2, and now he knows his numbers. Colors are still hard for him. Concrete things are much easier for him.. <br />
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He was only finger feeding at 2, and now he can use his spoon well.<br />
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He was a good walker at 2, but now he can jump and he can run.<br />
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He didn't care too much about Logi before he could move around, and now he gives Logi hugs and hits too lol all the time.<br />
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He could sign more and all done, then but now at 4, has about 10 signs total with prompting.<br />
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He just picked up the /p/ sound at 2, and now can combine /p/ with many vowels.<br />
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I guess we have to look at it this way- the progress is slow. It is very slow. It is so hard to be a part of. The doctor said Thurs, the kids have to keep working and the threshold will build and it will all be figured out.<br />
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Unfortunately Landon is so frustrated and aware, so i am working hard on that part.<br />
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Logi just turned 2 and he is making good progress in everything but language, so we will wait and see.<br />
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Happy weekend.... Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-19184886189605000412015-07-23T14:59:00.002-07:002015-07-23T14:59:15.000-07:002 months until 4Today is the 23rd. I do dread these days each month. Logan is now 2-3 and Landon is now 3-10. It is a quiet home. There are laughs and giggles, and also tears and frustration. There are so many things on the to do list that where do you start. I have not a clue. Today I was out trying to look for good places for Landon to go for the year after next, the year he is supposed to go to K. I am applying for OPWDD support, which could help pay for some things, if he was approved. So most of the morning was phone calls again.. and still have to work more on the IPAD and get Logi's picture book done. I am so overwhelmed. Each day, I wake up and think today with Logi- I have to work on the straw, the spoon, pointing, understanding language, following directions, play skills, core strength, etc etc<br />
With Landon, I am working on jumping off an item, imitation of actions, imitation of speech, signs, the fork, the ipad, taking his shoes off, his shirt off, play skills, confidence, trying new things, body awareness, potty training. <br />
It goes on and on. It is so all encompassing.<br />
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Today we learned there is more testing to do. I have to do more testing just to do it, so we will see.<br />
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I also learned that I could get meds for Landon with no big issue. I am not a big fan of that, but I could get them. Crazy.<br />
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To do this x2 is so hard. If Logan was talking now, I would be worried less, but my heart would be broken for Landon, so the boys do this together. We do this together.<br />
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I am exhausted.<br />
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<br />Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-68837813013261163122015-07-16T06:33:00.003-07:002015-07-16T06:33:46.323-07:00InclusionInclusion is a fantastic thing. It includes everyone and all children are exposed to kids who learn differently. I don't know but it bothers me so much when I am the reason your child checks the box for being inclusive, or you can say that you child has a friend who does not talk, or has trouble with using utensils, or whatever. I don't know if I just sit here in denial, but I hate it. I just hate it. To me, Landon and Logan are regular little boys. They have needs, but we don't want to be in your kids' class, so you feel good about yourself for being inclusive. That is probably not what those parents mean, but still. It's different when you are on the other side and you want your child to just fit in, not be singled out. <br />
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The other side is so hard. We want you parents with typical kids with tears hidden behind our sunglasses. We are so envious that you are not worried about finding a school that will take your child. We lose sleep at night thinking about how our child will ever make it out there without us. <br />
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I had a dream that Landon was talking. It was beautiful. I ache so badly for that. It just hurts. I want nothing more than for him to speak. Once he can speak, I can worry less, I know he can at least communicate his needs, be able to tell me something that happened, and not be seen for less intelligent than he is.<br />
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I think so far in advance and am so stressed thinking about moving, finding a good program for Landon, thinking should be go to K or not.<br />
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It's not fair that parents of typical kids can keep their kids back no issue. We have to fight for it. It makes no sense. The whole process here is ridiculous. Alex won't leave New York, so we are stuck.<br />
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PLEASE-----Speech progress!!!!!!! Please!!!!!!!!!!!!!!!!Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-31871425225821184432015-06-28T03:54:00.000-07:002015-06-28T03:54:12.105-07:00hard workSo many people do not get this, not at all. They look on with pity or are sad. Yes, this is all unfair and everything, but you do realize I have two sweet boys. Landon is so caring and concerned and hysterical and smart. Logan is so observant and wants to do everything on his own, he is so funny, and he is protective. Landon tripped yesterday and first I was holding him, and he was calming down, and logi was watching, but then as Landon usually does when something bad happens to him, he hit me, only one time, and Logi runs over and hits Landon in the head. It made me lol. He was so mad at him for hitting me. The boys are so good.<br />
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Anyways, my dad typically has no idea. So he says to me the other day that I will have to start working very hard with the boys this summer. WHAT?!? I said Dad, I work hard with them everyday. I have been for years. He does not get it. I know he means potty training, which we are doing, but still. ughKim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com1tag:blogger.com,1999:blog-1097435387018465386.post-60699905563807754062015-06-21T11:13:00.000-07:002015-06-21T11:13:08.076-07:00Where will this journey go?I still struggle with guilt, that I did something to cause this, that I did not protect my kids. I don't think looking back I ever did anything wrong, but I don't know. It's not fair. I am proud of myself. I see myself as rising above, as working very, very hard. I don't think most mothers could do this as well as me. I am being honest. In our own bubble, we are so happy here. We are thrilled when Landon signs open. We are so happy when Logi babbles. I can't even explain. It is just pride. Then we have to go out and we see that our kids are not like the other kids. And that part hurts a lot. It's easier to be inside, but not fair or right. <br />
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When will Landon start talking? I don't know.<br />
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When will Logan talk? I don't know<br />
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When will Landon be able to try something new without feeling so nervous? I don't know.<br />
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When will Logan be able to use a spoon or not throw his food? I don't know.<br />
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When will Landon be able to draw something and tell me what it is? I don't know<br />
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When will Logan drink from a straw cup? I don't know.<br />
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So many I don't knows. So many this is so not fair.<br />
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Yet we have to keep going and we will.<br />
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We have to have faith.<br />
<br />Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-38180063693856277592015-06-10T07:16:00.000-07:002015-06-10T07:16:18.358-07:00A new dxI will start with life is surely not fair. It has never been fair, nor will it ever be fair. It seems to be fairer for other people, but I do know everyone takes a turn with this. My turn is now. No one has children who are perfect, all kids have challenges somewhere, and at least I know my kids' needs early on.<br />
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Logan Gabriel was diagnosed yesterday with a mild hearing loss in both ears across all frequencies. As news rang out, I received texts that said things like "seriously?" "I am sorry" "and my heart sinks for you." Everyone shares our pain which is a nice feeling. Logan passed his hearing test the 2nd time at birth. Landon had failed his three times before he had an ABR so I wasn't worried when they said Logi had passed. As Logi was developed, he did not babble until 16 months, but again, concerns were said about motor planning, so I saw that as pure up apraxia. He is still not talking, but he does babble. He does try to imitate. He is a very observant, social, and curious little boy. Now knowing he has hearing loss, I see him strides and his accomplishments as amazing, another testament to how smart he is. He is a problem solver. <br />
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So last September, Logan was referred for a hearing test. I had no concerns with hearing, so I said I would see how he developed with the addition of more services and daycare. In December, I called and said I will take the hearing test. I signed consent I think a few days before Christmas and his first hearing test was on 2/19. He failed that in the booth and responded only at 50db; however, I was assured that most kids 21 months would fail in a booth because their attention isn't always there. I asked the classroom teachers at his daycare and they said he hears like the other kids as far as responding. Ok, so I will do this process but I was not worried. His receptive language is not great, but I was thinking more motor planning or auditory processing, and the fact that his therapy is push in, and I can work on it more this summer So off we go, to two appointments with this hearing doctor before we had the ABR. Alex had to take him and he could not eat. He was miserable when he arrived at the hospital. He got to ride off in a little push car and was honking the horn and was happy. Alex did not go with him back there, but had got him changed into a little hospital gown and little hospital socks. I arrived there about 11:15. We got called into a tiny room at 12:30. I knew it wasn't good. The audiologist started talking as if I am not an SLP, so I said that I was, and I wanted to know the loss, what he can hear, what sounds he would not hear, etc. The loss is 25-35db across all frequencies. He would not hear a whisper at all. Conversationally speech he does hear, but it is not clear. He needs bilateral hearing aids. So off we go getting this. He can get more services.<br />
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How do I feel?<br />
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Mostly I know all of this is out of my control. I did everything and made good choices for my boys, and sometimes, life isn't what it should be. We have to grieve the little kids we wanted and thought we deserved to have. Instead, we marvel at their accomplishments and we love them so much it hurts, and I know it hurts, because I couldn't sleep last night and woke up about to vomit this morning. It hurts so bad because it feels like it is us. In the grand scheme of it, I would take hearing loss over apraxia anyday. I will get him what he needs and see if it helps. I will continue to be proactive. I am sad for my Logi. He is such a cool little kid. I can already see the fight where he doesn't want to wear his hearing aids and I hear him talking and it is beautiful. The life I see ahead is beautiful and I pray to God he gives us a chance soon.<br />
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Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com1tag:blogger.com,1999:blog-1097435387018465386.post-17130521016390365162015-06-06T11:35:00.000-07:002015-06-06T11:35:14.482-07:00Sitting between hope and despairOn two separate days recently, I actually thought I should just give up. It was kind of scary. I thought maybe this is it- I will have two little nonverbal boys forever and this is my life. The truth is, I actually look for nonverbal adults everywhere I go. I have yet to find one that was not physically or severely disabled in some way. Am i looking in the wrong places? Not sure. I still don't see many kids who do not speak. I still don't get that part. Anyways, I was not meaning give up, like stop therapy, but just not do all the extras. However, I can't do it. This week I really drilled the "open" sign with Landon, to use on his own, and guess what, he can do it. It looks really cute because he is dramatic and his motor planning is off, but he learned it. It is so much easier to prompt by sign than it is for him to verbally produce speech. "ON" is back, but it came back as "om." I hear yea and mama and yum and his usuals, but nothing really new that is sticking. He is still trying. I look at him as strength. I can't give up.<br />
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Logan is babbling more, starting to vary the sounds. He gets his point across too. He knows where everything is and he figures how to get stuff himself. I have so much work to do with him this summer, but I am hopeful. <br />
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So most days I sit between almost throwing up thinking Landon will be 4 and may not really be speaking, or that I actually have two boys with apraxia. I look at kids doing activities, like today I saw a little soccer league, and I pray with every ounce of my being for my boys to be able to participate in something like that. I see kids joining activities and I just hope my boys can feel confident enough and with a sensitive enough coach to do that one day. Right now, I would never let them do it. But I have to hope. I have to. Life is too short to wallow in despair; we have to choose hope. and prayer. and have faith that God has this all figured out.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-16795961652788678602015-05-27T11:39:00.002-07:002015-05-27T11:39:33.179-07:00I am in so far over my headI was talking to my friend Nicole last night. She is an SLP also going through life with a special needs child. We were discussing how much we do: choose and program the AAC device, make core word lists, make picture books for our children to communicate, constantly email, keep track of everything, and we are exhausted. Lucky for me, I get to go to work everyday, but she is home. I often think about all the other parents out there who want to do the right thing, but are not trained; I have no idea how they make it. I am in so far over my head and I am an SLP. I have no idea what I am doing usually. I love language and fluency disorders- that is my expertise. I am bilingual. I totally disliked any of my artic, AAC, or motor speech classes, and yet, here I am. I work with kids who do not have anyone working with them at home, and they do move. My son has everything ever in the world, and he is stuck. To say I am overwhelmed is an understatement. I need to make another communication books and order more pictures of food, people, etc, and yet I have not even ordered Logan's newborn pics to hang up and have not worked on a baby book since I started this process. The world has stood still. There days I think things will be ok, they will get better, and there are days I think this is my life for the rest of it, and I will never make it. I am just going on. Landon is not sleeping enough, so he is hitting more when he is so exhausted. I take all his toys out, put him to bed early, have black out curtains, etc, and I am not sure what else to do. I am just lost. Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-12245349895882614472015-05-26T10:44:00.000-07:002015-05-26T10:44:01.174-07:00phone calls and hittingI got to work today, immediately overwhelmed by how much crap I have to do, kids to see, and today we had a field trip.<br />
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I also came in today knowing I had 5 phone calls to make. Phone calls could be my life. Most of them require a message let, a follow up, or something. It is never just one phone call and that is it. <br />
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So I had to call Logan's early intervention coordinator to figure out if it is best to get a new SLP. That was a 15 minute call- she is calling the SLP and will be back to me.<br />
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Left another message for ARISE horseback riding... playing phone tag, but need to see if this horse back riding place is better suited for us<br />
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Had to call Dr. Dosa to get genetic results- looks like all is fine with both boys genetically<br />
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Called the coordinator for the program I am trying to get Logi into for the fall to check on it, etc, etc. <br />
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The phone calls don't end.<br />
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Landon has been hitting a lot. It is not usually frustration, but more excitement, like his favorite part of a book comes up and he hits. I don't know why. He can express this with laughter and happiness, which he does, but then hits. Ugh. I got an email that he was hitting a lot today. He does not mean to hurt anyone. <br />
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I sent an email with his updated core vocab list. You know, all the work, it never ends.<br />
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I mostly think I am planting seeds right now. There is nothing else to do but plant the seeds and pray they work. There are days and times that everything is impossible. You hear whining and you want to just cry. You have no idea how to program an AAC device and have to learn. You spend all your money on therapy, trying so damn hard, for progress, not perfection, just progress.<br />
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This is so exhausting. <br />
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It is hard to explain. We need some prayers with all the little things we are trying to handle and plan.<br />
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thanks.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-68216901809431177712015-05-25T08:06:00.001-07:002015-05-25T08:08:55.324-07:00My child is no less amazing than yoursPrecocious little children are everywhere. I take my kids out all the time and inevitably we run into small children. I always kind of hold my breath as they approach, kind of hoping I will run into one who does not speak somewhere. It seems so rare, yet I know how common developmental delays and disorders are, but maybe others just don't take their kids out. I don't know. When I see two typical kids together in a family, my heart hurts. I look at those parents and think you have no idea at all. They will be on their cell phones, not tuned in, not noticing the little things they are taking so for granted. I once ran into a mother with a 16 month old. I overheard her at the park saying apraxia, so I went over to her and asked about apraxia and her child. She said oh I think he has apraxia. He is only saying about 20 words. I looked at her and said that is highly unlikely. He had no other signs because being pretty much on target for language. I told her it is a serious disorder that she shouldn't just throw around. That was a year ago. Now everyone I know is pregnant. Thrilled for them, yes I am. Three good friends of mine are expecting babies. Odds are eventually one of my friends or family will have a special needs child. Autism is 1 in 42 for boys, so just that, will happen. Apraxia is 1 in 1000 and I think I have that covered, but it would be nice to relate to someone else. I try to tell people children are amazing, you love them like no other, but they don't solve all your problems. In fact, I am pretty sure those who do not have children by choice are no less than happy than those who choose to and can have them. It is all a lifestyle choice. <br />
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Anyways, my subject says that my children are no less amazing than yours. I posted something on one of my groups the other day and I literally said I would give up my leg for my kids to talk. Laura texted me and said she believes it. It is a desperate feeling. Kids who speak, everyone loves. Oh my gosh, did you hear him. The quotes show up on fb and get so many likes and comments. People write them down in baby books to remember what the child said. The children who communicate through other amazing ways are often overlooked. It is true, I used to do it. Shame on me. These kids are probably more amazing-- they are not ordinary, but extraordinary. Let's all endeavor to find the strengths in every child we meet, disability or not. Every child is here for a reason, and mine are NOT here to make me a better person. Side note I hate when people say that. I do not want my kids to struggle to better me. They are here because genetically they were manufactured this way, on top of environmental crap and vaccines, and who knows what else, and truthfully, we do not know. God allowed them to come to develop as such as their mom, I Will do what any mother would do, and that is raise them to the best of my ability. They deserve no less than that.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-24999878879960361042015-05-20T11:10:00.001-07:002015-05-20T11:12:13.230-07:00Move Along Move AlongMy mom used to love that song "Move Along" by the All American Rejects. She would always ask me to turn the volume up, and we used the phrases in a lot of our emails, just saying to each other, move along, move along.<br />
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Speak to me, when all you got to keep is strong<br />
Move along, move along like I know you do<br />
And even when your hope is gone<br />
Move along, move along just to make it through<br />
Move along<br />
Move along<br />
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This is kind of what is like as a mom of a child with needs. You have to be strong; you have to keep working, even when you wake up exhausted, your body aches, you couldn't sleep the night before, and you think of the day ahead. You pull in the driveway and silently say a prayer. You wake up and think maybe this is the day they talk. Hope can be sparse and yet you LIVE on hope. Hope to a special needs mom is a like a hit to a heroin addict. We have to have it. Hope comes in small things. Somedays it is a word, a sound, a compliment, an interaction, a great email, even for me, it is watching my own students grow. That is hope. <br />
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The truth is my life and my kids' lives are separate. Eventually, their lives will not be so intertwined. My heart will not break as it is was me for my sons' struggles. I am doing EVERYTHING in my power to help them out and make their lives easier. I did not do this to them on purpose. I had no control over this ridiculous disorder. I would easily take it from them instead of me, but I am doing my best to teach and show and prepare. My mom wrote in the journal she left me about how difficult her childhood was, and how she had hoped my childhood would be spared any pain. I wish she was here so I could tell her that pain is growth; pain is change; pain is progress. It is not fair- it hurt so much, but in so many ways, I am so much better off than my peers. My kids are learning life lessons, not by my choices, but they are.<br />
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These kids with Apraxia are amazing. I look at my students today, and today I worked with 5 kids with Autism. They are simply amazing, and the progress is astounding. Sometimes I look at the kids and tear up. I am so proud of each of them. <br />
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You have to keep moving along to get to the final chapter. We all want to read it. We want to know the ending, but it may be that unwrapping the present a little each day will be enough, will suffice. At the end, I know I make every decision, not with my own interest in mind, but my children, and the pain I carry for them. The hurt, the aches, I take them on, in hopes that their lives are easier than mine. That's what a mom does. We hold onto hope and move along each day, as best we can.Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-65416532694445526082015-05-17T05:22:00.000-07:002015-05-17T05:22:03.653-07:00Coming outMy kids are so much more than apraxia, so much more.<br />
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5 words to describe Landon: bright, hysterical, sweet, sensitive, affectionate<br />
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5 words to describe Logan: crazy, daredevil, concerned, fun, and aware<br />
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Both brings many strengths into our home. I watch the two of them play together and am so happy for that. They take turns nicely, share toys, and help each other. Yes, they also push or hit, but they are brothers. They truly care about each other and look for each other if one is not there. I am thankful for that. <br />
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Apraxia Awareness Day just passed. It is only the 3rd Annual. I sent an email out to all my work staff about the day and urged them to wear blue and white in support of this disorder, and reminded the staff that we do have 3 kids at Delaware diagnosed with CAS. Every time we have a meeting about one of those kids and I say X has a dx of apraxia of speech, the teacher has never heard of it. every.single.time.<br />
Hopefully not next year.<br />
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Ironically, all the kids I have with CAS are super smart. That's a good trait of this dx.<br />
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So I decided I will have to come out in some way. I first formed a group where I could post videos, accomplishments, and posts, and not feel bad that I am rejoicing over a CV syllable. I have a good group of people interested in our accomplishments. Then the day came, I put up a simple wear blue due to this day and I love two special little boys with this... and invited people to message me if they wanted in the group. I got some nice messages. <br />
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Awareness is not bad. I do want others to know my kids struggle AND work hard. They do both. They are AMAZING. There are days no one talks at all and my heart breaks the whole day, begging for something, and then there are amazing days, with lots of speech. This disorder is so up and down, that it could kill you. I am finding more people in my situation and their kids are ok. Are they 100% typical, no, but they make it ok, and that's my goal. They don't need to be a huge sports star or win the essay contest at school. They need to be: happy, confident, and know they are loved. That has always been my goal.<br />
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We don't need sympathy, just prayers.<br />
<br />Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-74852654916334829372015-05-09T07:07:00.002-07:002015-05-09T07:08:53.744-07:00Keepin onSince that last post, we have battled back. Last weekend, I met with other moms of kids facing apraxia. It was wonderful. Our kids are each unique, but all of us do have kids with global apraxia and SPD, to varying degrees. The other moms had older kids and my guy is still just 3. One thing we talked a lot about was are our kids happy? I can say with 100% certainty, that yes, Landon is very happy. Logan is too. Why are they happy? I am not sure. I think it's their disposition, they have a wonderful home, lots of love, and I do try to be patient with them. The other thing I try to is not have their lives ruled with therapy. I do a lot of work in context with them, but we have a lot of fun. There are nights worse than others, but in general, we are positive, we keep it light, and I do praise for every little thing. Landon loves praise. He eats it up. Logi is starting to get there too, puts a puzzle piece in, looks up for immediate reaction. I am always willing to give it up. They work hard.<br />
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I had to call the support teacher about the phone call I received last week. And guess what, Landon had a better week. He still cried walking in the big room where the climber was no more, but he gets over things quickly. I received his progress report- 14 pages - yesterday, where he still continues to make progress. The most progress is seen with his social skills and also his motor skills. Speech is and will be the hardest part for him. He is ingenius in how he communicates and he amazes me. <br />
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My friend Laura @ www.slpmommyofapraxia.com just wrote about the fight we parents have to have. Mostly we fight for people to see what we see, to see the smart kid, the potential. That is a hard fight. I do fight that. I write in each email to the team that we maintain high expectations for LANDON, and Logan too, but less of a fight at 24 months of age. We do not give up goals for them. If Landon decided he wanted to become a doctor, a mayor, a public speaker even, I will devise a plan to get us there. There is no end in the fight, the push, and the love i have for my boys. Apraxia or not, they will be all that they were meant to be.<br />
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And that is really what awareness is about-- understanding the struggle, but never giving up the dream.<br />
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<br />Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-34724867559779613202015-04-27T10:43:00.001-07:002015-04-27T12:49:53.458-07:00just the momIn the big world of special education, of services coordinators, special educators, therapists, goals, IEPs, sensory diets, and the like, who Am I but mom? I just got off the phone after an awful conversation with Landon's teacher. His speech has not been progressing, but I have seen progress in other areas, such as kicking, climbing, with his peers, eating lots of new foods, staying with me, following rules, etc. I wanted to check how he was doing. She says he has regressed. Basically she said he will make more progress next year, so what wait?? for 5 more months. She was not friendly or nice about it. "Nice chatting with you" she remarked. I immediately texted back that she could have touched base with me anytime, not wanting for me to contact her, etc. I said I know you are not the mother of a special needs child, but we work hard, we work tirelessly, and we are easily hurt. I kill myself with Landon, it is not his fault at all and I tell him that all the time. How insensitive could someone be.<br />
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I am not anybody but mom, but that is the somebody all of us should remember. We can't treat kids like they are a number. That's why I hate labels. Oh, you know Alejandro, the autistic boy, the downs girl, etc. That is what you hear. It is sickening. It happens too. Oh, she is a 70 IQ, you can't expect much. I want them all to know that I do NOT CARE, NOT one bit what Landon's scores say, or what they think they see. What I see is a huge amount of potential, a career, a family, a happy life. I won't rest for a minute till everyone else sees that, not even thinking about it. It is very sad what special education is these days. I hope to one day find a place where kids are seen for their potential, not their progress; their smiles, not their voices; and most importantly, their determination, not some stupid number that means nothing. Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com1tag:blogger.com,1999:blog-1097435387018465386.post-20181634968986914952015-04-26T13:46:00.001-07:002015-04-26T13:46:21.471-07:00so hardWhat is hard is when you know. I knew Landon had apraxia young. I also thought by 18 months, there was a sensory piece involved. I have known he was smart from very young. I remember going to a play date with twin girls before Logi was born, so Landon was probably 17 months. Landon was babbling dada the whole time we were there, and these girls really did not speak. However, I knew there were no sensory issues, motor skills were great, nothing else, so I knew these kids would speak. The next summer, we saw them again, and who was speaking in sentences and who wasn't. The kids are the same age. The mother of the twin said to me, i am sure landon will talk early since he makes so many sounds. I just smiled. I already knew.<br />
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My neighbor has a just turned 3 year old. At 2, he was not talking, and he started speech. He had just a few words, but the words he had, he had. They never changed production and he was solid in them. He also had amazing motor and play skills. He was over today. Guess who is not receiving speech anymore? That boy.<br />
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It is hard because I knew all along. I had really no idea it would be this severe or this difficult, but I knew.<br />
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God I pray that next year, Landon can be the boy speaking!<br />
<br />Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0tag:blogger.com,1999:blog-1097435387018465386.post-36566352399943436352015-04-23T07:56:00.004-07:002015-04-23T07:56:45.839-07:00Significant progressAlmost a month ago, Landon had his Annual Review meeting, which is his yearly meeting to discuss progress/programs. As I sat down at it, I was sort of annoyed, because his teachers were not there, but the support teacher was. I kind of wanted someone who worked right with him to be there with me, for me. As we began reviewing everything, I kept hearing the words, "significant progress." Landon has made significant progress in this, in that, in everything. Everything EXCEPT speech. But still, progress is progress. I sat there and they asked me what I thought, and all I could really say was "speech is everything to me. Without speech, I don't know where he can go, what he can do. He has to develop speech." Someone said sometimes he is stubborn and does not want to say something. I immediately stood up for my son, and said, he wants to; he just can't. I get very defensive about my baby. I kept thinking what is significant progress to me, do I use those words at school with kids who are still functioning years behind, and maybe I do. I do know that since starting this journey, I am very much more understanding and patient with my students, parents, stupid tests I have to give. I have sat at meetings and said to a parent, "This number is really nothing, but I have to tell you xyz." My favorite boy, Alejandro was nonverbal in K. He is now speaking in long sentences. He is still on the spectrum. He is also a joy. I would be so proud if he was my son. I love him so much. He is up for re-eval. He won't do well on the testing because he doesn't always think in a standardized way; he just doesn't. He also gets off topic all the time. He still has made significant progress. For me, I have been on this road and through this. I had Landon signed up for a typical preschool, then maybe ok, maybe he will need teacher services, ok he is going to a special needs prechool, finally, for next year, he will have a 1:1 aide. It is a process. Maybe I have made significant progress in accepting this, but it does not feel like it. Significant progress for me is no more IEP. That is too lofty of a goal. I just want him to talk. I could care less about anything else. <br />
So that is that, significant progress. I am proud of him, and hopefully the next big progress is speech. Iep finalized. Summer school starts July 6 and he is going all day next year to preschool. He will be exhausted. At these meetings and in dealing with teachers, etc, best thing to remember is: You are the expert on your child. I know Landon more than anyone, and no one will tell me differently. He has made nice progress and he is capable of so much. Nobody better sell him short. Kim & Alexhttp://www.blogger.com/profile/14147957591073664006noreply@blogger.com0