Summertime “Spaghetti”

I’m combining a few different recipes (as I like to do every once in a while) to create what I will henceforth call summertime “spaghetti”. I’m taking part of a meal that my grandmother cooks, combining it with another meal she cooks, and then adding an element I found on pinterest. I dare say it turned out amazing!

Summertime “Spaghetti”

• 1 spaghetti squash
• 1 med. zucchini
• 2 small yellow squashes
• 1/2 vidalia onion
• 2-3 tbsp olive oil
• 1lb hamburg
• 2-3 c spaghetti sauce
• italian seasoning, onion powder, garlic powder, salt.

Start by cooking the spaghetti squash. I’ve never cooked one before so I’m trying it the way my mother cooks butternut squash: cut it in half lengthwise, place it face down on a cookie sheet with just enough water to cover the bottom, pierce the skin a few times, and bake it in the oven at 350 for about 45 minutes, until it is tender enough to separate from the skin.

While the spaghetti squash is baking, slice the onion, zucchini, and yellow squash and saute in olive oil until tender. Set aside.

Brown the hamburg, drain, then add spaghetti sauce and sauteed squash.

Discard the seeds in the middle of the spaghetti squash, then pull it apart using two forks and place it in a pan. Drizzle with olive oil, season with italian seasonings, onion powder, garlic powder, and salt to taste, and saute until it’s just barely starting to brown.

Serve the spaghetti sauce mix over the spaghetti squash and ENJOY!

Silver Lining

Getting a good, knowledgeable general case manager is the absolute greatest thing I could have done through this move for the boys! She has so much more understanding and maneuverability through the systems and red tape and knows more resources than I could have ever dreamed of finding on my own. With her help, we are getting a wonderful team in place here that is *mostly* shaping up to be even better than the one I was dreading to leave behind! Our case manager feels like a best friend and has been my saving grace by helping me not only to find and obtain resources but to also accompany me to our various appointments and therapies and help me manage being out and about with two special needs kiddos (a feat which is difficult, to say the least, when I fly solo)!

Our new Early Childhood Special Educator (ECSE) through CDS is EXACTLY what the boys, especially J, need! I couldn’t be more happy with the aid she is providing us. She is so accepting and understanding and has some wonderful perspectives and suggestions for helping with some of the boys’ more difficult characteristics.

At our last session, the ECSE asked me who my greatest support(s) are and I answered her honestly by saying that, besides my husband, it is my children’s therapists! Is that really pathetic? I don’t have many close friends; the ones that I do have find it difficult to relate to all that comes with having children with special needs because they have never been there themselves.

All this wonderful support couldn’t be coming at a better time because we’ve lost some of the progress we had been making with J before the move. Moving has really thrown a wrench into an engine that has difficulty accepting change to begin with. We’re seeing many manifestations of the chaos he feels. He’s back to screeching all the time, he doesn’t want to eat and has become extremely picky, he’s becoming aggressive with his little brother and lashing out with adults too, he can’t self-direct any more, he’s more easily upset, he’s taking more risks, and the list just goes on.

C’s seizures are worsening in intensity and frequency, especially in the last week. We saw a neurologist on Monday who thinks that the seizures seem to be occurring due to lack of oxygen to his brain from the breath holding as opposed to originating in the brain as in the case of epilepsy. At first he was just tensing up but that last couple days he’s full on convulsed and it’s more pronounced on the right side of his body (so right arms and legs are convulsing much more than the left). I’m hoping the severity and frequency plateau soon. He’s having multiple spells a day when not even 2 weeks ago he would have about 1 every other day. I was able to get a few on video to show the doctors but there seems to be nothing more that we can do for him. The doctor mentioned medication to help with the seizure part but it wouldn’t do anything against the breath holding reflex and the side effects wouldn’t be worth it. We were advised to just make sure he’s safe and then ignore it as much as possible so we don’t subconsciously reinforce the reflexive behaviors. I disagree.

Where to Begin?

Exactly the question I’m asking myself as I sit to write this post. Life has been on chaotic hyper-drive since our move last month! Getting a new medical team in place for each of the boys has been my biggest undertaking (well, other than unpacking boxes – holy cow!). We’ve made progress so far: The boys have a new pediatrician, general case manager, CDS case manager, early childhood special educator, and visiting nurse. J also has a new OT and SLP. We’ve kept all of J’s MMC specialists (pediatric surgeon, GI, developmental pediatrician, urologist) and we are adding a geneticist to the team. C will be adding a pediatric neurologist.

J had an official SLP evaluation and he tested as severely language delayed, with the development level of an 11 month old (He is 26 months old). It’s really interesting because his official OT evaluation also placed him at the developmental level of 11 months. Our new special educator had a great point regarding tolerating J’s behavior and understanding (or lack there of). Even though he is chronologically over 2 years old, developmentally his isn’t there yet. We need  conform our expectations of him to meet him where he is, not where he should be. So in essence, we should expect of him what one would expect of an 11 month old. This change in mindset and expectations has helped to widen my patience and lessen my frustration with him.

Next week is going to be CrAzY busy! On Monday we’re driving 2 hours (1 way) to bring C to a pediatric neurologist. His Breath Holding Spells have been worsening and now it appears that he is having Reflex Anoxic Seizures (Here is a video of one – *WARNING* may be disturbing to some viewers* http://www.youtube.com/watch?v=_ddB46Lppqc). His new pediatrician is concerned enough to send an urgent referral but at the same time, we are under the impression that they are benign and not harmful and the specialist is simply a precaution to cover all the bases. It’s one of those “Just to be sure” type things. Tuesday, J has joint speech and occupational therapy then both boys have the special educator coming to work with them and later we have a care coordination meeting with some of J’s new health team, Wednesday is C’s care coordination meeting, and Thursday I’m driving another 2 hours for J’s appointments with the geneticist and developmental pediatrician. Whew!

The silver lining in all of this is that by starting over, we now have some team members who I think will be more beneficial for the boys than their previous ones!