Dyer Family Happenings

A.K.A. Mommy needs a place to write!

More worry. Always with the damn worry. — February 15, 2016

More worry. Always with the damn worry.

We had Max’s Psychology evaluation with our local regional center. The Psychologist was the same initial psychologist that did not diagnose Leo with Autism. ( we went back a month later and he was diagnosed within minutes of a different Psychologist meeting him) So I have my reservations with his decision.

We also had his evaluation with our school district. They blew through it. Parts of it made me uncomfortable because they assumed he knew things without testing him. Is he smart, very much so. But there are problems, concerns, issues. And I can’t figure out how to help him right now.

His speech is slipping backward more in the past week. He is losing more initial letter sounds, he has “language” right now but most of it is not recognizable to most people. His current speech teacher said this week with his lack of words she was able to hear a very pronounced lisp and is wondering how much of that is effecting the rest of his attempted language.

The Psychologist through the regional center said he was going to write his report that his speech delay is still a huge concern and we would not lose funding for speech services. Then last week our liaison tells me that they never have funding for children over 3 for speech services. So we lose his regional center help in a month. We have an IEP meeting with the school district next month, but if they don’t find enough of a delay he will not be given services through the school district either. So there is a chance that my child, who still cannot communicate and has an overload of sensory issues will lose all services next month and I don’t know how to help him.

There are so many things with him that are worrying me.

His hands are clenched in fists almost all of the time, he can’t speak in understandable sentences, he can’t answer simple questions a better part of the time, he melts down when he gets frustrated, If a bath towel touches him he screams, washing his hair is like a wrestling match, he can’t handle that water on his head.

Every interaction with him ends up like a speech session. Trying to get him to slow down and very intentionally make his sounds. But putting them together it doesn’t happen. It’s like his mouth literally will not form certain letter sounds. I watch him fight and fight and then get frustrated and shut down. When he shuts down, it’s over. I can’t get him to even try again.

Trying to get Providers and Insurance to acknowledge his sensory processing issues is hard. And his sensory issues are so outside my scope of knowledge. Even with reading and listening to his current O.T. and trying all kinds of things I can’t get a grasp of his problems. I can tell you what sets him off, what he can’t handle. I can tell you how I try to make him comfortable with any of these things, but it doesn’t last long or at all and I feel defeated.

I want him to be able to talk to me, to tell me that something hurts or that he just doesn’t like it. I just want to be able to communicate with my little guy, and I can’t. And I don’t know how and right now my spirit is pretty squished.

So pray please, that we get some help so that I can continue to learn to help him learn and grown.

Offers of help, Mommy worry and phrases that invoke anger — February 12, 2015

Offers of help, Mommy worry and phrases that invoke anger

(I want to start this whole blog post by stating this has nothing to do with one person or situation, it is my feelings in general and I am thankful for the hands that surround our family)

“You seem so stressed out”
“You need to let your control issues go and let people help”
“You and Joel need more one on one time”
“You need to have a weekend away without your children”

These phrases make me mad. (Logically they shouldn’t, they are coming from a place of love) But they do. We have people, both family and friends that are like family that help us with the boys when we need. But I try not to ask often. I know these people love not only our children but us and for that I am so grateful. But it’s hard. And these people that toss these phrases out don’t understand that they just scramble my brain up.

Leo is now talking, and that makes it easier for me to leave him at school for 3 hours. Now he can tell someone if something is wrong, if he needs something to drink, go to the bathroom, whatever. A year ago he couldn’t, and I had terrible anxiety taking him to school, or leaving him at church in the kids area, or with our family and friends that volunteered to help. He would get so frustrated by his lack of words and the tantrums and screaming would follow. And the judgment from people about his tantrums broke my heart. I know what it feels like to not be able to comfort my beautiful child and I didn’t want anyone else to feel that way. And now there are similar things happening with Max. So my uncomfortable dealings have shifted to him.

My OCD is very helpful in planning and scheduling, but also a P.I.T.A. when I see that it’s already in both of my children. I never set a schedule for the boys, we fell into a daily one. Lately it’s been set by having to be at school at a certain time everyday Monday-Friday. Top that off with there always having to be a fork by Leos plate at meal times- even if he doesn’t use it (trust me it makes no sense that he eats macaroni and cheese with his fingers but refuses to touch eggs without a fork), that he has to completely finish a book before we can change tasks. That Max has to dump everything out of a something and put every piece back (when asked to) at a snails pace. That Max wants to dress himself and there are days I have to wrestle him to put his clothes on because it would be noon before we made it out of the door otherwise.
That he can’t read a book without at least holding his “glasses”.

The thought of leave the boys overnight with someone, or even having someone come here gives me anxiety. I’m not comfortable with it. And I am okay with that. I’ll get there.

There is an issue with discipline. With Leo its cohesiveness. It has to be the same from place to place and person to person, and when there is someone that isn’t around to see how we do things I worry that it won’t go right. And with Max he has decided to be 2. In all of its all boy, full body tantrum throwing, object throwing glory. It is ugly, and figuring out how to get through to him is a definite challenge.

I am sure as the boys get older I will get better with my feelings with these things. But something I need people to remember before they make statements about what we should be doing, or how stressed I look, is that I am still very sensitive to EVERYTHING involving my children. Their triumphs, set backs, learning, hard learning, discipline, all of it. I don’t know if it’s just being a Mom or if it has to do with having children that need extra time put in to them, I just know it’s me. I love having things offered, but if I don’t accept, it’s not because of control, or being stubborn, it’s because this is my job.

I get time off for good behavior. I get to go to Target and wander, I get to go for jogs and walks, I get to head out with friends. Joel gets his time too when he needs it. Do I get stressed, yes. Is it real stress? Sometimes. Is it me in a hamster wheel. More often than not. And I have an amazing husband to help reel me in when I get that way.

So for the time being we are us. And we ask for help when we need, and we have those that have been walking step by step with us through all of this and understand where I am at. And I can’t thank you all enough. And to everyone that offers hands, there will come a day when I accept and I can’t thank you enough for always wanting to help.