What Does it Take to Make Things Better

What lengths would you go to make your child’s life more comfortable? How about a child with a wide range of problems? Not just one thing like a food allergy or multiple food allergies, but walking problems, developmental issues, their speech is missing or even the ability to tell us simply what she needs, and now on top of that discovering vision problems? How far do you adjust your life and home to help that child learn and function as normal as possible?

Sometimes I am so completely drained I feel empty inside. Dom and I are worked to the bone trying to trouble shoot and make things more suitable here, but it just seems like an endless cycle of “lets add one more problem to the laundry list of issues we already deal with concerning Simmi.” Just as we’re adjusting and finding creative ways around the food issue, and finally getting the floors down in the house, up pops a problem that may be a link to some of the developmental problems she has been having. We’re detectives trying to find the missing puzzle piece of Simmi’s developmental delays. Knowing that she already has this long list of problems, we are wondering if vision problems are contributing to more of her issues. Is it possible?

She has low muscle tone and has had this for a long time. The physical therapist attributes her walking problems with having low muscle tone and Simmi is trying to compensate for this problem by developing a new gait. She also feels that it is the contributing factor of not wanting to get up and walk around or run. But how about when she goes outside and refuses to walk? Is that low muscle tone or is it her vision? These are the types of questions swimming around in our brains constantly. If we go out during the day and it’s very sunny out, she becomes agitated, upset and sometimes gets scared or wants to be held. Why? We know from experience that she does better in low light settings and she is wonderful in the evening hours…calm, peaceful and amiable. During the day, its a different story! As long as the house isn’t flooded with lots of light she does pretty well, but she is often irritable and at times even irrational. She doesn’t really nap anymore during the day which is making things even more hectic. She gets up during the night more than ever as well. So, if bright sunlight is somehow blocking her ability to see, how do we remedy the situation? Blinds and curtains work wonders, and controlling the light that is in the house seems to help as well. But is that enough? What if the light and her vision is preventing her from learning? What if her central vision doesn’t work properly and that’s why she tends to look out of the corner of her eyes? She cocks her head in weird positions, not all the time but enough to see that there is something more to all of this. I have been doing some research here and there when we have a moment, to find out more about Cortical Visual Impairment (CVI) and one thing that I have found is that it is possible for children to regain more of their sight with the proper therapies. How much therapy does this child need? Yes, we can have a therapist here every day of the week for different things, but the therapy should continue even after the therapist leaves. This is where we take over. I need to take the lead with all of this, because the therapists in their field of work come for one hour per week each. Discovering this new problem with her vision helps us to focus in on techniques and approaches that will be more suitable to her therapy. At first glance, when a therapist is here, we might think that she has a VERY limited attention span. Is it her attention that is the problem, or is it the fact that she may not see very clearly what is being presented to her? She responds much better to bright bold colors, moving objects and shiny things. These are the types of things that will need to be incorporated into her therapy and into everyday life. But what does that mean for us as a family? There is no way I’m putting a disco ball up in the dining room, or streamers all over the house that glimmer and shine! There needs to be a “tasteful” way of incorporating shiny objects and special lighting into our home and the house look NORMAL! I’m learning about the properties and principles of multi-sensory therapy and taking those principles and looking for a functional design for our house.

In Simmi’s room we purchased some very cheap shiny stars to hang from her ceiling. What we discovered is that if objects and things seem effortless for her to focus on, she becomes less fatigued. The hanging stars in her room provide movement when there is air flow in the room through the central air/heating system, and when we carry her into her room to put her to bed or take her out of bed, it provides an opportunity to develop her eye-hand coordination because she always wants to touch them or hit them to make them swing or move. The more effortless it is for her to focus and see, (in my opinion) the more it strengthens her vision. It’s such a simple thing and yet she consistently is interested in reaching out for them and with that beautiful wonderment that children seem to have, says “WOW!” every time she enters the room…without fail.

Having a child with undiagnosed problems can be difficult. But it doesn’t have to be. We know our children better than any doctor or therapist, understanding what works and what doesn’t, and its important that we realize that their development is in our hands….not the doctor or therapists. A diagnosis would be nice for her, but what then? She doesn’t have any major organs affected that need to be assisted with the use of medication, so all I can do is trouble shoot and find the right combinations of things that can work for her. Getting to that point is the hard part. It means constantly watching and evaluating her. Its almost a clinical approach to parenting, yet maintaining the close relationship and trust that it takes to move her to the next level in her development. It means never giving up hope and always striving for the very best we can offer her.

We noticed that she looks uninterested in learning things, but is she uninterested or trying to get a better glimpse of what we are showing her by turning her head to the side? She seems to look away, but is she looking away or looking peripherally? She picks up things without looking at them, or is she just looking out of the corner of her eyes this whole time and we never noticed? Yesterday as we were walking out of my room, she walked full force into the molding on our door. She didn’t fall into the door jam, she just walked, thinking that she had clearance. She seems to have a high tolerance for pain, because she didn’t cry afterwards…she just sat on the floor and started to crawl instead. The worst part of all this is that it happens when you least expect it. Not realizing or even noticing these issues in the past makes me wonder if the reason she gets so confused is because she actually can’t see something. She’ll put her hand out and grunt for something, we’ll take her over to that object so she can have it and she will say no and get upset. Is she confused about what she wants? It seems like she can’t make up her mind! It can be very frustrating for us, but I now wonder if her reaching out and grunting is her way of saying “I can’t see this or that.”

We will be creating a Snoezelen room for her in her bedroom. Here is a picture of what we are aiming for when designing her room:

While Snoezelen rooms and equipment are extremely expensive, we can create a room like this with a little creativity. Did you notice the disco ball? Remember earlier I mentioned NOT having a disco ball in our dining room? Simmi is very attracted to arrays of light, prisms, movement, smell and sound, so to incorporate these types of things into the rest of our home (without making every room look like a Snoezelen room) we have decided to go with crystal chandeliers, mirrors and things that draw her eye to where we want her to go at different times during the day. It becomes a way of helping her focus and concentrate effortlessly.

Our bedroom, the dining room and living room are other areas that she is in often. I do deep pressure massages on her after her bath time and that happens on our bed. We have designed our room (although it is in the planning stages right now) to include a crystal chandelier over the bed, lots of mirrors, textures and patterns throughout. How do you have crystal prisms on nightstands and dressers, crystal lamps and vases, flowers and pictures WITHOUT a toddler grabbing them and braking them, potentially hurting themselves? In my design world, I will be mounting these objects to old furniture. The textiles I’ll be using are cut work velvets, silks and satins and furs, providing an endless source of things to touch and experience. Mounting objects to the furniture allows for her to touch the object without possible damage and it becomes the focal point that draws her eye to what ever object I want her to touch or experience in that moment. The design I came up with for our bedroom is not my style at all! Dom and I had planned for a very streamlined more modern and clean look, very minimalistic. That plan went right out the door one morning after discovering that Simmi has vision problems. I realized I was going to have to go for an elegant shabby chic. I put my foot down though when it comes to lots of flower patterns! Not just that, but keeping things simple in terms of patterns is important for Simmi. I’m being stretched and pulled out of the comfort of my design world and into something that in the end will look absolutely beautiful, but totally not my style. The picture on the right is similar to a look I’ll be aiming for. Much more texture, but the intention is to include shiny objects coupled with lots of white. She does well with white in low lighting because it doesn’t fatigue her…everything kind of blends allowing for a more relaxed experience. Our room already has mirrored bi-fold closet doors, which at first we were going to get rid of, but now see the value of having them. Playing with the mirrored concept and use of crystal prisms can actually bring a large amount of sophistication to our room and at the same time be a constant source of therapy for Simmi.

So what can I say? How far do I go to make her life and ours more pleasant and relaxed? Is it worth the effort? Absolutely! I’m tired of waiting for that next opportunity with a therapist, or needing to bring out the objects for her to utilize. I want her to be strengthened each day effortlessly so we can get to the real business at hand…being normal.

How much does it cost to do all this stuff? A lot and nothing at all. If I were to purchase everything new, there would be no way I could afford it all. We have already collected a few items for free off of Freecycle, and I’m always amazed at what some people just get rid of. Usually it doesn’t fit their decor anymore, or its something that was passed down that has been just sitting in their garage. I can actually make the mirrored night stands if I want that look, and as far as bedding goes, I plan on creating my own with Dupioni silks, taffeta, velvets and other textiles. Where will I get these types of fabrics? On sale at Joann fabric or if someone happens to be giving away an old wedding gown. I’ve been on the look out for lots of wedding gowns. When no money is available, everything takes time to acquire. Some times things come in quickly, and at other times it seems like eternity waiting for that special little object. We already have an antique chandelier that someone was getting rid of, and I’m in the process of restoring it to its former beauty so we can hang it as soon as our bedroom is painted.

For anyone willing to go the extra million miles to make their child’s life better (and ours too), I highly recommend trouble shooting how your child responds to their environment. Is the child agitated during the day or evening? Does it make life almost unbearable because you can’t figure out what the hell is wrong with them and you are pulling your hair out because you’ve tried everything? Experiment! Try turning the lights down, or making it brighter. See if background noise like the refrigerator or washing machine aggravates the situation. There is background noise that we become used to but to a child with sensory problems, that sound may drive them crazy and they don’t even realize it. How about if more than one person is talking in a room? Does it drive them bananas and make them lash out? If the light or even background noise is too much for Simmi she begins to take a swipe at us. She will hit and kick, start pulling at her hair and maybe even just start screaming. The hair pulling we have been dealing with for a long time, and we knew it seemed to come in cycles, but now we notice that light and sound have something to do with her hair pulling. Its amazing when we’re willing to watch intently, we see a host of very fixable problems that can help her be more at ease. Being at ease means being more receptive to learning. I’m even considering wearing bright red lipstick during the day if it will help her focus on my mouth when I speak. Children learn to form words by watching others speak, but what happens if they don’t see your mouth clearly or how you form your words? How do they learn? I’m not a lipstick girl, but I’m willing to try it!

It has been quite the adventure, taxing for sure, but well worth the effort. Yesterday we had an Occupational therapist and Simmi’s service coordinator here, and I was thrilled that this particular OT will be helping in creating a plan for Simmi’s sensory issues. At one point during the session, as we were discussing Simmi’s vision, Simmi was able to comprehend what we were talking about and actually put her two cents in concerning her vision. I got a little teary eyed when I saw Simmi standing in front of her service coordinator and while covering one eye, kept looking at him and saying “see, see” and pointing. Then she would cover the other eye and say “see, see”. She understood what we were talking about and was babbling on about something concerning seeing. It was clear as crystal that she was explaining something, and she was so happy that we were catching on. At least that is how I interpret yesterday’s events. The language barrier is still there, but I feel she had her own personal break through yesterday. She understands far more than she can indicate and I am excited to give her the proper tools to make her world more vibrant, clear and comfortable.

Our Grandbaby Simone

Simone (we call her Simmi) is our first grand daughter and light of our lives. She is 18 months old and has suffered since birth with multiple health problems and extreme pain. Life has not been easy for my little bundle of piss and vinegar, but I do all that I can to make her life more enjoyable.

Imagine coming into the world, and just a few days after coming home from the hospital, your skin starts to blister up and then dry out and fall off. The pain of touching her skin would send her into blood curdling screams. This was the beginning of my journey to find the correct medical attention and comfort she so desperately needed. Taking her to the dermatologist brought grief as the doctor looked at her for five minutes and proclaimed “She just has severe eczema, put some Triamcinolone on her skin when she needs it, give her a TEASPOON of BENADRYL daily, and I will see you in three months for a follow up.” REALLY? Is that all? Her skin was falling off and it’s weepy, bloody and oozing and all you can tell me is to put a toxic medication on this newborn baby? I asked if there was anything else that could be causing it…his response will forever be burned into my mind when he said to me “There is no use trying to figure out what is causing her problems…you will never find the answer, so why try?” What an idiot. It couldn’t be the formula she was drinking right? Or maybe something she was allergic to in the home? Why give her a whole teaspoon of Benadryl? When I asked about the amount of Benadryl he said “Well, try a teaspoon and if she passes out from it, just reduce the amount she needs.” OMG! I couldn’t believe the reckless advice he was giving me. I knew she was allergic to something, but we hadn’t taken her to the allergist yet to figure out what it was, and yet this doctor’s answer to my grand daughter’s problems was supposed to be solved by a tube of ointment and a bottle of Benadryl.

It took faithfully putting this toxic ointment on and loading her skin with Vaseline to keep her skin from drying out, three to four times a day to finally get the problem under control. Now her skin has a few patchy problems, but she is doing far better than in her ealy days of life. Was he right in the advice he gave? Yes and no! Sure the Triamcinolone cleared up symptoms and the Benadryl also helped with out breaks, but the man was crazy to tell me NOT to search for the cause of it in the first place. I guess that was how he stays in business huh?

These are the other problems that Simmi has had to endure, and to spare turning this particular blog entry into a novel, I will just give the highlights:

• Skin problems
• GERD
• Severe constipation
• Neurological problems
• Multiple food allergies (she is allergic to peanuts, milk, eggs, wheat and soy)
• Allergic to dust mites
• Sensitivities to latex and many different fruits (has tested negative for latex allergy)
• Problems eating and swallowing foods
• Sensory problems
• Diagnosed with a speech disorder
• Developmental delays

From the time that she was born until we moved to New Mexico, this child has suffered. When we lived in Maryland, Simmi was enrolled in an Early Intervention Program called Infants and Toddlers. Specialists come out to the home of a child, evaluating whether that child should receive help and sets up goals, giving parents or caregivers tips to help children reach developmental milestones. They felt that Simmi would benefit from this program and we had a physical therapist, occupational therapist and a special teacher help her to walk, use her hands better and to try to get her interested in discovering what a toy can do. Simmi wasn’t interested in toys very much. She was more interested in wandering around once she learned how to walk. She made very nice progress by the time we were set to move to our new home.

When we moved to NM, there were some changes that happened almost immediately. She began to say some words. This totally amazed us all, because she had been diagnosed with a speech disorder just a few months earlier. There is SO much more to her story, and in time to come I will add more entries about the different aspects to her care. For now, I would like this to be an introductory of sorts. Simmi has become affectionate, which is another first for us. Speaking, singing and affection…what an awesome gift! She has taken a bash at singing and while she can’t pronounce the words correctly, she has the melody of certain songs down pat! To have her look us in the eyes and smile or come to us and want a hug or to give a kiss is so beautiful. I believe that many (if not all) of her medical problems are tied to the mold problem that we had in our previous home. We are hoping that her eyesight will improve also over the next few weeks.

While she still has problems with her walking, and sometimes using her hands, she is getting better at using her hands and manipulating objects. She has taken an interest in two new toys and is consistently playing with them and trying to discover what they do. Here are some pictures I took with my phone…they aren’t the best quality…but good enough! LOL

After clipping Simmi’s toe nails she became curious about the nail clipper, and I never thought she would sit and try to figure out how to use it! At first she fumbled with it, and then turned the top portion, and actually tried to mimic clipping her toe nails.

I started to cry when I saw her actually manipulate the nail clipper. I am so proud of the progress that she in now making.

We got her one of those push toys that pops the balls and makes noise and she walks around with it constantly now. She usually has to have something in both hands, but I am enjoying the fact that she has taken an interest in a new toy.

There are a lot of things that she still needs help with, but I am hoping that our time out here away from the mold will help her to catch up. In the meantime we are eating her up, and enjoying the love that she is beginning to express to other members of the family. I wonder how she feels inside?