They Let That Ship Sail
Sorry I have been quiet lately . There is so much going on around the House of Krause. Really I have been at a loss for words. I thought we would be able to squeak by in this rotten economy. Unfortunately, it’s effected us tremendously as I know it has for so many! My stress level has been through the roof. Luke is fast approaching his third birthday. It is bitter sweet. At three he will lose all of his services through our regional center. Including his one on one speech therapy with Megan, his play therapist, and his occupational therapist. This has been Luke’s life for a year and a half now. He waits at the window for his therapist to come. The most devastating loss is of course his time with Megan. I have been heartbroken. He has come so far this past year. I kept thinking what’s going to happen? I had committed myself to just continue on, doing the best I could for him. What else could I do. Just take what I’ve learned so far and just keep trying. But I was scared to death. I really don’t have a clue what I am doing on my own. Could I accept this responsibility? What if I really blow it, and all this hard work for the past year starts to melt away. Believe me it does happen. There are certain sounds I’ve seen come and go when they are not consistently worked on. I pretty much cried all the way to speech yesterday knowing these were his last couple sessions. I pulled it together to sit through the session and try to retain every bit of his instruction I could. I left the office and continued right back to my tears. As my mom and I drove home I told her I just wanted one phone call. One person to call with any good news. When we got home I was rubbing my legs with cortisone cream and taking Benadryl to combat my stress hives. I heard the faint sound of my cell phone ringing. It was my cousin on the line. She asked what I was up to? I said, basically I am a true mess. To make a long story short. Their family had been planning to take a Disney cruise this summer, and after a serious family meeting they all decided they would cancel their trip and use the money to pay for another six months of speech therapy for Luke. We both sat on the phone balling. There are really no words to express how grateful I am. I feel terrible that three very special little girls will not be boarding that ship. There is a reason children grow up to be givers. There is a reason children grow up to have compassion in their hearts. It’s something that is learned. I pray God will bless this family a hundred folds. I hope they realize this will not only affect Luke’s life but it will also allow me to continue to share my experiences with you. I am so thankful and grateful beyond words. Special people, huge hearts!
This little one said, "It's o.k, we'll all go on our Disney cruise when were all rich." One day I know she will realize just how rich we really are, because we have each other!
September 16th, 2009 at 9:37 am
Oh gosh Jen, I am crying reading this! What amazing people to be do something so kind and completely selfless. You must be so touched by their generosity. That is such wonderful news!
September 16th, 2009 at 5:59 pm
At a loss for words…
What a wonderful blessing. I am so happy for Luke and you guys, and it is refreshing to hear such awesome news. Truly awesome.
September 20th, 2009 at 1:06 pm
Jen,
Reading this I feel for you. I am curious-who picks up Luke’s therapy at 3? Under IDEA, Part B (3-5 year olds) there must be someone who Luke transitions to as he leaves Part-C funding (ages 0-3).
Lisa
September 20th, 2009 at 1:36 pm
Hi Lisa, Luke is supposed to transition to the public school system at age 3. Our public school system is currently giving me the run around. Every time I call they say they are waiting for paper work and to call our regional center. I call our regional center they say the paper work has been sent. They say Luke’s name is on the list. I think they are just putting me off. I have talked with other moms who feel the public school system does little for a child with Apraxia who needs that continued one on one speech therapy. And he has made so much progress with the Kaufman method, and his therapist Megan, I just can’t let that go! Thanks for your concern and info. Lisa. Love, Jen
September 20th, 2009 at 3:07 pm
Jen,
keep fighting. Call them and tell them that he turns 3 on ____ date. If he is not placed in therapy by that date you will be expecting compensatory services for all therapy missed. I bet “suddenly” all his paperwork will show up.
Jen, I am an SLP for the public schools…I see only the pre-k aged kids. I live in another state but please don’t give up on the SLPs there.
I have several children on my caseload who sound a lot like Luke. Their parents were less than positive about transition. I can honestly say they are (usually) pleasantly surprised that us “school SLP’s” actually work very well with their children. Yes, some continue private therapy. Some don’t. 1:1 speech therapy is good…but I have found some kids eventually do better with group because they see they are not the only child who struggles-and, as I write below0group therapy addresses some things that 1:1 just can’t. I typically, however, don’t group young 3’s. I am fortunate right now to be able to provide groups as I see fit-and not as a norm. Here are some things i have learned:
1) Ask to be present for each session. You want to continue to see what techniques the therapist uses. If you can’t be there-ask for notes about each session. What they did, what you can do and how to elicit the skills. I write a note home every session. some are detailed and some are (continue what u did last week). Get this put in IEP if you feel the SLP won’t follow through.
2) Ask for a 10 minute phone consult 1 time/ month (on IEP) between private and public SLP’s. if they refuse then require a notebook where each therapist writes what they are working on-and how Luke did and any strategies used.
3) Get them to write Kaufman cards in the IEP-so they must buy and use them. I use them routinely–and my supervisor to bought them for everyone this year.
4) If you think he needs more therapy time-speak up. These meetings are done so often that it is “routine” for the school staff. Don’t be intimidated. Fight for what Luke needs.
5) If Luke is able to recieve private Speech-look at the public school speech as extra therapy or extra practice.
6) If the SLP seeing your child doesn’t seem to do well-ask for a change. We are all human and sometimes our personalities don’t “gel”. I know a fabulous SLP-and this little boy wouldn’t speak to her, play with her-nothing–she tried everything. I started seeing him and he does everything for me. It was a personality conflict-not a level of skill issue.
Finally, sometimes the school SLP focuses on something that the clinical SLP can’t. For example, I work with a boy who sounds so much like your luke. He is apraxic and, at 3, had very little speech. the 1st year I provided 1:1 therapy 2x a week. We started this the 2nd year-but one day I noticed that, despite his ability to form intelligible 2-3 word sentences, he only talked to adults. he would walk away rather than ask a peer to move so he could have a spot at the sand table. he would wait for 10 minutes for someone to drop a toy b/c he wouldn’t ask for it. I switched and started seeing him in the classroom. i encouraged him to talk to the other kids. He received private therapy during this time that focused on sounds. By May, you would have never known that he had that trouble talking to peers. he talked as much as everyone else-and the other kids understood him. This year, we are going out of class speech again-in a group b/c he has met all the classroom goals right now. I feel that I am able to augment and supplement his private therapy-and it is working.
I hope this helps. Luke sounds like a child I would LOVE to work with!
September 20th, 2009 at 11:23 pm
Wow! What a wonderful wealth on information. I am going to print this out and keep it with me. Thank you for taking the time to give me so much information. I sure wish you were an SLP in my town!
Thank you, Thank you Lisa!
September 25th, 2009 at 1:02 pm
Lisa, I called with this information and finally got through to someone. Guess what? They were at my house within two days doing Luke’s assessments and full work up.
What a week it’s been. Thank you again for taking the time and encouraging me!!!! Love, Jen
September 25th, 2009 at 1:46 pm
ha ha! that’s too funny-It is sad how you sometimes have to be bitchy to get services…I am glad I was able to help. remember-you are your sons biggest advocate!
lisa