CAROLINE CARTS

"Hey! Check this out"

Helping Special Needs Families

If you are a parent with a special needs child with mobility issues, then you should definitely check this out. There were a couple times when I tried going grocery shopping with Kaleb; there I was trying to maneuver Kaleb's wheel chair and a shopping cart through aisles and obstacles. Most people just stared, a few would come and talk to us, mostly people just minded their own business. Let's just say there's a reason why I couldn't take Kaleb with me grocery shopping. BUT! A genius has changed those circumstances. I really wish I had known about this before.

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There are so many things that I love about these carts! I love that the handles open up so that you can put the individual with special needs in. I was wondering how this would work when I first looked at some of the images that are on-line. I also love the hooks on the sides of the cart. Kaleb had extra equipment that had to go with him everywhere we went. This would make hanging his bags somewhere easier without taking up more room in the cart. The only issue is that they were bulky and I don't know how easy it would have been to maneuver through the grocery isles. Another great feature is the bottom platform where the individual can rest their feet. The only problem I think I would have had with this was Kaleb trying to kick my shins (not on purpose of course!) but, he always loved to kick! I know he would have loved this and we could have included him in our shopping trips.

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Enough Is Enough

How Does One Acquire The Title "Deadbeat Dad"?

This is something that truly tears my heart apart. Not only because it is very personal to me, but because so many woman and children are affected. And I know it isn't just Deadbeat Dad's, that there are Deadbeat Mom's too. Either way, I am only going to write about my experience here. I can't and will not speak for anyone else besides my son and myself. But, feel free to add your perspective below - I am interested in hearing what you have to say.

Ten years ago I married the person I had thought I was going to spend the rest of my life with. He was someone I had known since childhood, and didn't think that such a betrayal would ever enter into our lives. Especially since we had experienced so much trauma in our early relationship. Naive as I may have been, I had the fairytale disease, where I thought love could conquer all. 

To lay it out on the line, basically we got married because I was pregnant. We had been living together (house sitting), when we found out we were expecting, I didn't want to move back home preggers, and his stipulation was that he didn't want to live together unless we were married. Unromantic as it was, it's life. 

Three months later and nearly two months early, my water broke. Our son was extracted a week later. The birth was very traumatic, and it wasn't over yet. Our son would undergo numerous surgeries in the NICU (Neonatal Intensive Care Unit). I was fighting for my life as well, having contracted Necrotizing Fascitis I was given a 50/50 chance of survival (rather, the doctor's gave my family the states - they talked through me if you know what I mean).

Statistically, marriages with special needs children are at high risk of divorce. There is not enough help, and there is too much strain on the relationship. However, what broke my marriage to my son's father was his infidelity. He wanted out of the marriage and took the cowardly approach. We separated before our seventh or eighth anniversary. Don't feel bad for him though, he remarried (the same month we were divorced) and he now has 'the perfect family' that he wanted. I guess you could say he's living his 'happily ever after'.

Deadbeat Dad Defined

According to Princeton.edu web definition, it is 

"a father who willfully defaults on his obligation 

to provide financial support for his offspring."

Keyword = willfully defaults. If you are a spiritual person, you can understand the ethics behind this statement and how it relates to sin in the Bible. To know what is right from wrong, but then willfully and purposefully do wrong, is a disgrace to the person that should know better and chooses to continue their sinful ways. According to scripture, you should enjoy your life now, because you might not have much to look forward too after you perish from this earth (if you know what I mean). Someone once told me, in a more harsh term "it's o.k., let them (cheaters) enjoy their life now, once they die they have to answer to God". Which, is a time to fear God, in the Bible he compares liars to murderers. You entered into a covenant with the LORD, when you took your marriage vows. You not only cheated on your wife, you hurt Him as well. And, as if this wasn't bad enough, the ignorance and shame continues when they do not live up to their obligations.

If only there was an official authoritative person that
would issue "deadbeat dickhead" citations...

During our separation and divorce, there were many hoops and hurdles, but finally a year and a half later, we were divorced. In the decree it was agreed upon that (my now EX-husband) he was to pay child support in the form of continuing to make the mortgage payments. There was a term and stipulations. Such as, if I was unable to take over the payments by a certain date, then the house would be listed and sold. Until this date, my ex-husband was to pay the mortgage as child support and alimony. 

Through his bad choices, he was forced to retire, leaving him without a job for a number of months.

During this time, he was unable to pay the mortgage payments... he stopped paying the mortgage (a.k.a child support) and never paid a penny more, even when he did acquire a source of income. This was a year ago now. Tonight, after trying to discuss options, I was told that "they (him and his 'new' family) were going to bed" and if I wanted to talk about this I would have to contact him after 5 and before 9. 

What started the open dialog this evening was, that I inquired if upon the start of school for our son, if we could return to week-on/week-off schedules, since right now I am technically the primary physical custodial parent (since my son is with me for at least 80% of his time during the month).

Having a special needs child with severe disabilities is not easy, you have to make a lot of difficult choices. At one time we were considering placing our son in an assistant living facility. However, until he meets their age requirements, the only option for my son is to go and live with someone else, in a strange house. It would also require that we, as his parent's sign him over to the state. Which will never happen as long as I have breath entering and exiting my lungs. To even contemplate this concept is sickening and I become physically sick and overwhelmed.

Now, since he has not been making the home mortgage payments, as he was suppose to do, the house in in foreclosure. My stress levels are all jacked up, I can't uproot my son again - he had an excellent year and he needs his home, this home, for stability. As I couldn't live with knowing that my son was living in some strangers home, it will tear me apart from the inside out, if we have to uproot yet again. I am working with a Home Partnership program, in a hail-Mary attempt to keep our home. This is my son's home, with his disabilities (he is legally blind and deaf) having the regularity, the routines, helps him to better appreciate and get-around in the world.

As much as the financial neglect is upsetting, what is more upsetting is his willful default. One of my favorite songs, by Evanescence is about how you saw this person you loved with resonating light and after you learned who they really are, the light fades and the darkness consumes. This song has more lyrics that are more truthful to the situation:

So, Now What?

This is when you have to pull up your big girl panties and go to war. Nothing in life is free, and no one is going to do it for you. So, what I had to do was to contact Child Enforcement Services, I had explain to them the down'lo. They sent me a stack of papers that I had to read through and fill out. Where I am in the process, they need a copy of my divorce decree for further investigation and for their records.

Before I had sent the papers in, I contacted my son's father and made sure that this was the avenue that was before us, if he continued to willfully default from his obligations. He agreed to the legal process, even after I explained to him that he possibly could face jail time. So, I submitted the paperwork. I just have to get the copy of the divorce in, and then hopefully this matter will be resolved. 

From here, as long as everything is in order, we will start receiving child support payments and they will be garnished from his wadges.

I have never proclaimed that my son's father was anything less than caring of our son. He is a master of his super power. I didn't want to think about this for a long time, but it was pointed out to me that his form of manipulation, he doesn't want anyone to think any less of him. This drives him to 'put on a good show'. While he might do this while our son is in his care, I have to believe that he is a good father. If I had any doubt, then I would not be so calm while he was with his biological father.

Please - keep us in your prayers ~ 

Until next time or the next....... dream.

 

No Night Nursing

Having a son with special needs, he requires 24/7 care. Through his insurance he is allotted 8 hours of nursing a night. The reason he has to have someone monitoring him around the clock is because he has a trach (tracheotomy) to help him breathe and a J-tube (jejunum) for his formula feeding. Kaleb can have nothing by mouth. We let him have a very tiny taste once in a blue moon, like a little (tiny) bit of icing from his birthday cake. We have to be careful because he has micro aspirations. This is due to his tracheotomy, there is a flap that covers our esophagus so that when we swallow the fluids do not go down our bronchial tube to our lungs. Kaleb's flap does not close enough and small secretions can escape, going to his lungs and could cause further complications.
Because Kaleb requires 24/7 care, we have to have a nurse come into our home for Kaleb. This was very awkward in the beginning, trying to relax and go to bed was nearly impossible when a stranger is watching your medically fragile son. It gets better once you get to know the nurse and build trust. However, I have learned (the hard way) you should keep a professional relationship because, unfortunately, people can take advantage of your trust.
So, when a nurse is unable to fulfill their shift, usually there is no coverage. So then, it is up to me to stay up and take care of Kaleb. This can be more challenging and difficult when multiple nights are required and you have responsibilities during the day that will not permit you to rest. I heard once that interrogators will keep their prisoners awake, and after experience going days without adequate sleep, I can totally see how extreme sleep deprivation can be torturous.
On a positive note - Kaleb went to school today so I was able to get a couple hours of good sound sleep. It is both important for our mental and physical health. Lack of appropriate rest can result in various health concerns that can be very serious. I know when I do not have enough sleep it affects me physically by my symptoms of nauseousness and dizziness and mentally with irritation and depression. As caregivers it is crucial that we take care of ourselves.

Early Interventions

March 7th, 2013

Early intervention is crucially important when your child has special needs. Working with challenged children for over 20 years, I can first-hand testify that the difference can provide a better quality of life for you and your child (children).  Many parent's really do a disservice to their families when they do not seek help within that time period when they are still questioning their child's development (meanwhile also questioning themselves at the same time). As aggravating as it may be for a parent to feel the pressures from the politics of school systems and specialists; it is equally as aggravating working with children that could have had better odds if they were given the chance for early intervention without prejudices from any party involved. Think of your child's care, education, and anything else - everyone is a member on your child/student's team, and everyone needs to work together to benefit the child.  The student/child should always be the priority. If you have questions, ask. If you disagree, find the facts and have documentation.

This also applies to sensory integration. Introducing sensory at an early age can be beneficial especially if your child is tactile defensive. There are great ways to incorporate sensory into any child's early development.
Here are just a few:
3.) Make shaking bottles. Take a used (see through) plastic bottle. Kids seem to like any size from 2 litter to a smaller bottle to do this with. Then have them fill the bottle. Popular items include beans, bells, and small decorative erasers. This will also help hand and eye coordination as well as occupational therapy. Another great spin on this concept is water bottles. Use water and oil (food coloring to add color) and it creates that contrast that can be therapeutic for both child and parent. Make sure the tops on the bottles are securely closed.  If you have a child that is able to open the top, then you may want to clue the top on to avoid choking hazards or possible poisoning.
2.) If you do have a child that is very sensitive to touch (which is associated to many different disorders, syndromes, or other classifications). A way to help your child work toward increasing tolerance is to create a feel box. Decorate the box so that it is appealing for the child to explore and play with. Add different sensory items such as sand paper, bubble wrap, scents, and lotions (just to name a few). Once they are more comfortable discovering and using the items in the box, you can also cut a hole in the box and let them discover what is inside without actually looking (it's fun when they have to guess what they are feeling). This is not going to work for every child. It is really important not to beat yourself up (or your child) when something doesn't work out how it should. You can always give it a break and then try to reincorporate it again. I have to do this with my own son - sometimes he doesn't like something the first time, then the more I present it to him, he's like "yeah, whatever."
1.) This is a great sensory activity, just be warned that it can be very messy. Make sure you have a sheet ready to lay down on the floor before. Have a couple different larger Tupperware containers. Fill each one with a different sensory (beans, noodles, sand, water). You can add their favorite toys in the containers to promote the child to play within the ingredients (however, this could highly upset some children - never do something if it is going to be traumatizing. Start small and work up toward a goal - baby steps). This is why I said to put the sheet down to cut down on the clean-up time (don't freak out - there will be spills!) To add consistency to your child's daily routines you can have a set time to do these activities or a certain day.  This will also cut-down on any behavioral issues that could arise.

Speaking of behavior, early intervention is crucial with behavioral management as well. It is one thing for it to be age appropriate, it is another thing when the child is a repeated offender (especially if they are physically hurting others). Seek counseling and help right away if your child is hurting their self or others. It might be time to seek professional help and create a behavioral plan.  These are put in the place for the benefit of everyone in the child's life, including the child.  Consistency is another very crucial aspect, if you do not have consistency then the child will understand that the rules can be broken and could take advantage of this (to their benefit, no one else's). Make sure you follow-through with what you are telling your child. If you do not follow-through, it is sending mixed messages, it can be confusing and only agitate an already delicate behavioral scenario.

 
Remember that every single child is different, what could work with one child and one situation, could not work with any other. Don't give up on your child or yourself. If you feel like it is too much, seek help for yourself as well. A couple key factors hat I have learnt through my 10 years within my own son's life, it isn't easy. I have cried, screamed, and have even been hospitalized. Make sure to take care of yourself, you can't take care of other's if you yourself are not taken care of.  Go to therapy for yourself, if you can't go to a counselor then try to join an on-line community (there are a lot of them) and they are wonderful. It is a great resource as well, you can read what other's have experienced and gone through. You also can ask questions if you have them and want an opinion of another parent. Make sure to participate and share, someone could learn something from you as well.
Feel free to ask me questions by posting below.

Until next time or the next... dream
K.E.Nowinsky