Today I called to find out where we were with the Occupational Therapy process with Chris. His initial evaluation with EI showed that he would qualify for it but at the IFSP meeting his case manager felt that he may shut down if we had 4 therapies initially. So, she recommended that he receive Speech Therapy, Physical Therapy, and Developmental Therapy. I’ve called multiple times since his Physical Therapist felt he could use the OT to ask about adding it. Its super frustrating when Chris is having issues feeding, dealing with sensory issues and all that comes with things that are him. He’s not self feeding as well as he had been before. He can’t deal with things that are wet or slimy on him. He freaks with crowds. It seems like he’s over stimulated often. He hand flaps, goes in circles and waves his hands and screeches. He’s biting a lot more and Jon and Matty are running away from him now. His case manager said that she gets to make the decision to add things (Since when is that the rule? It’s supposed to be a group decision! I get a say here!) Then she said “I’m not blaming you since you are as much a part of this team but you could have said you disagreed with what my idea was by not giving him OT right away.” Don’t these two statements contradict each other? Silly me, I thought that if we wanted to add something it wouldn’t have all the freaking red tape involved to do it. I didn’t realize that if his initial eval had in it that he could benefit from OT that if we didn’t add it and went back to relook at it that we’d need to do another eval. No one ever let me know that we had to wait for 3 months to even look at re-visiting his IFSP!
I feel like he’s getting further and further behind….he’s still at a 6 month old level for speech. He’s still at a 6 month old level for social and emotional development. He’s at least gained a bit in gross motor from his initial eval where he was at a 10-11 month old level. Now he’s at a 12-13 month old level for gross motor but still at a 10-11 month old level for fine motor. He’s not able to drink from anything but a soft spout sippy cup. He lacks the motor development in his mouth. He’s not moving things bi-laterally (from side to side) and instead he’s just chewing a bit then swallowing half chewed food hence the big chunks in his poo. I find myself angry and bitter at being around those with “typically” developing babies. I want to isolate myself from them so I don’t see how much of a painful reality it is that he’s not “normal” and will never be “normal”.
Then I called after calling yesterday and Friday and going to the peds office Thursday and talking to them about Chris and his non-sleeping issues. He’s going to sleep at like 2:30 or 3 am on average and waking up around 7 then napping about noon to 2:30 or 3. It isn’t healthy for him. I broke down and tried numerous sleep training techniques with him and nothing is working. They suggested letting him cry himself to sleep no matter how long he was crying. I feel like this is cruel for any child let alone him who can’t let his needs known to us. George decided to do it the other night and I ended up crying most of the night that he did as well. Chris cried for over 2 hours and finally George got him and got him to sleep. I asked the ped about melatonin after doing much research on it. My research showed that sometimes kids who have developmental delays lack the natural melatonin in their brain that tells them there are tired. I believe whole-heartedly that he is one child that this is true for. His ped consulted with his neurologist who felt that we wanted to “drug him up” instead of try to get him to sleep on his own. So, instead we have to do a sleep study to see if they can help pinpoint a behavior issue with him. They want us to go back to our favorite hospital…the one that effed up the original 24 hour EEG in September. And, it takes awhile to get an appointment; he said 4-6 weeks on average. I stopped going to my parents since I can’t handle him on my own anymore. Again, another bitter point here…..
Jonathan and Christopher had their ear surgeries yesterday. We had to be there at 7 am. They did the standard pre-surgery things to get them prepared. They came in to ask questions and Jon did a typical 3 year old thing and hid in a corner in a ball and put his big doggie and baby doggie in front of his face. He cried and screamed that he was scared. I had to hold him down to have them take his temp and put his tags on. He kicked me in the face several times. They weighed him and my skinny minnie weighed 33 pounds! He is just so stinking skinny! Chris was just completely unaware of what was going on. He weighed 28 pounds according to their scale. They came out of surgery and were sleeping. When they woke up they were happy and acted like nothing ever happened. They were super when we came home.
Friday we went to the circus with Jon and Matty. They loved it! Afterwards, we went to Applebee’s (or as Jon calls it “The hungry store”) and they had to have been famished! I’m not sure why since they ate a huge thing of popcorn in the circus but Jon ate a hot dog and french fries and had his lemomade. Matty had chicken fingers, french fries and his lemomade. So, when it came to asking about desert, I let them. They shared a chocolate chip cookie warmed with 3 scoops of ice cream, chocolate fudge and whipped cream on top and crushed Oreo cookies on top of it all. They loved it!
And to top off my lovely day, today marks the one year of my grandfather’s passing. He was an amazing man whom I loved dearly. I’ll forever miss him…….
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