IEP debacle update: I still have not received a final version of the IEP. I was told they had to wait until I spoke with the speech therapist (who wasn’t at the meeting even though I did not excuse her), at said meeting I was told I would need to speak to her specifically about her section since she is the one who evaluated and wrote it, no one at the meeting had the ability to answer my questions. Jump to yesterday, after multiple tries to get the speech therapist to email me her response instead of call (I want it on record and she just wants to call and has basically all but refused to answer my questions through email) I get a call from the district director, or as I like to call had the woman who took notes during the meeting I had never met and was not part of our team so I had no idea why she was there. She leaves me a message to call her back, and when I do she is of course out of the office. A few hours later I receive an email from her stating that the speech therapist will not be back in office until next Monday. Now, in all the correspondence with said speech therapist she has not said anything about being unavailable this week and there has been no talk of any sort of illness or family emergency just that she isn’t going to be in the office. This director then continues to say that she will answer any questions that I have for the speech therapist… If you remember from above she was already at the meeting and had already told me she could not answer those questions. So unless she has magically received a speech pathology degree in the last two weeks I’m not exactly sure how she thinks she’s all of a sudden qualified. So I politely emailed her back stating that the only person that should be answering my questions is the Speech therapist and she better find a way to contact her. This is all getting more and more crazy and I feel like my heads going to explode, but I am going to figure this out for my son. It looks like we will be postponing the start of preschool until the new semester starts.
My boys 💙I’m so lucky and thankful to have an amazing partner in crime who is so great at calming my nerves when I begin to worry about Leo. The day they called me to let me know that the results of the prenatal blood work had come in, he was out of town doing an interview for work. I called him to let him know the two things that the doctor had told me 1.) we were having a baby boy 2.) he has Down Syndrome. The first thing my husband told me was “That’s my boy!” Later that week I started worrying about Leo’s future. He told me something that I will never forget. “We are going to have so many wonderful experiences because of him that very few people get to have. He will accomplish things that people without an extra chromosome accomplish. It may be on his own time, but he can do it as long as we always encourage him and never say that he can’t.” I would not want to take this journey we are on right now with anyone else. Taking one day at a time with one of the world’s most wonderful father and husband. #ourextraluckyworld#morealikethandifferent#fatherandson#tickletime#happythanksgiving#downsyndromeawareness#nothingdownaboutit#onedayatatime
"جيك ولد بمتلازمة داون، وفي سن الثانية تطور معه مرض المناعة الذاتية ويسمى الثعلبة الكاملة (كامل تساقط الشعر).
على الرغم من أن هذه التشخيصات هي جزء من جيك، فإنها لا تُعرف به. جيك رياضي في أربع رياضات ويستمتع بممارسة التمارين.
العلوم والقراءة من بين المواضيع التي يفضلها أكثر، ولكن هدفه النهائي هو أن يصبح عضوا في أكاديمية الشرطة للمبتدئين.
جيك أيضا مودل وظهر في العديد من المنشورات على مدى السنوات الست الماضية.
وهو مدافع عن حملات مكافحة التنمر من خلال نشر الوعي من اللطف والتسامح والقبول.
الاعتقاد الخاطئ أن هؤلاء الأفراد هم دائما سعداء،
هو اعتقاد كاذب، وهذا مفهوم مهم لفهمهم.
متلازمة داون لا تجعله في مأمن من مشاعر الحزن والخوف والغضب. .. repost via @instarepost20 from @ablefinder "Jake was born with Down Syndrome. At the age of 2, he developed an autoimmune disease called Alopecia Totalis (complete hair loss).
Although these diagnoses are a part of Jake, they do not define him. Jake is a 4 sport athlete and thoroughly enjoys exercise. Science and reading are among the subjects he favors most, however his ultimate goal is to become a member of the junior police academy. Jake is also a model and has been featured is several publications over the last 6 years. He is an advocate for anti-bully campaigns by spreading awareness of kindness, tolerance and acceptance. The misconception that those individuals with DS are always happy, is false. This is an important concept to understand. Jake's DS does not make him immune to feelings of sadness, fear and anger. He experiences the same gamete of emotions as all teens do. Jake must learn to cope with rejection and failure which isn't always easy, so it is important for others to recognize this struggle and offer positive reinforcement and encouragement when needed. Jake does have the tremendous gift of resiliency and his ability to forgive without judgment or retribution is one to emulate. We feel if more people had 3 copies of the 21st chromosome, the world would be a much nicer place. Follow Jake's journey @downwithjake as we navigate the triumphs and failures together. With God's grace, he will continue to break barriers and be an inspiration to others." 💙💛✨ #enableawareness#downsyndromeawareness#theluckyfew
Ryder is still sick. Day 3 of running high fevers and being cranky 😥. He isn't dehydrated or struggling to breath however I'll likely take him in tomorrow. We could use some prayers that he gets over this soon. I really don't want to miss thanksgiving. Also, one week from tomorrow he has his EUA plus an MRI of his brain and spine. It took a while to get that all scheduled together but if he isn't healthy we will have to cancel 💔.
Hi! My name's Tank and I just dominated my first full bottle since going home!!!!!!!!!!!!! It took a little longer than we were supposed to go... like 45 minutes... but this is still a huge victory!!!! So incredibly thankful for his recent progress with feeding. #whatstroke ?!? #tankstrong#mysonhassuperpowers
Ellie and her best buddy Braxton had so much fun at Chuck E Cheese together. When we asked if she could ride with him, he turned to Ellie and told her to “hold on tight because I go REAL fast” 😂❤️ These two melt my heart!! It
A year ago this week, Ian walked holding our hands for the first time. I’ll never forget it. I immediately texted our PT to tell her how thankful we were for her, for the gift of walking, and for Ian and his hard work.
A year later, and Ian is walking independently. He’s done 3 steps or so for the past month, but today it was 7 or 8 steps at a time. This week it’s clicked for him–he knows he can walk and he’s stopped being scared/frustrated. In fact, his abundant enthusiasm and excitement and laughter are throwing him off balance and perhaps keeping him from doing more.
So today we are thankful for the gift of Down syndrome: that because of the impact it has had on Ian’s gross motor development, we’ve had not one celebration of a first step, but many, many celebrations of his incremental successes. We are thankful for what Ian has taught us about patience, hard work, and getting back up. We are thankful for Ian’s strength and abilities. We are thankful for his laughter (oh, how thankful we are for that laughter!). We are thankful for his #1 cheerleader, Adele, who started dragging him around by the hand this week at daycare and who Ian so badly wants to chase. We are thankful for Ian’s team of supporters: from family to medical professionals to the strangers that cheer him on while he uses his walker in public.
Life is so sweet. #downsyndrome#downsyndromeawareness#theluckyfew#lifeisbetterwithyou#specialneedssiblings