Milestones

Remember your first visit to the pediatrician where your child receives their first “grades?” He is in the “X” percentile for height and the “Y” percentile for weight. Some moms might feel like they are at the head of the class. “You, Mrs. Jones get an A+! You must have religiously taken your prenatals! Good job!” My experience was more like getting detention. “Your child is in the 15th percentile for weight. (I heard “You must not be breastfeeding” – go directly to jail and do not pass go). Luckily for me, I’ve never been one to take criticism well so I simply smiled, left the doctor’s office and went straight home to burn the entire “What to Expect” series of books that had been passed along by my friends or gifted to me at my baby shower.

My son wasn’t meeting his developmental milestones. And being a first-time mother, I didn’t think there was anything wrong with that.

Phoenix had no neck strength. He constantly held his head back and seemed to look up all the time. What was my reaction when my mom pointed it out as a possible problem? I told her he sees angels. I thought maybe my nana was in the room, or Jesus. Or angels were all around us. I still don’t discount the theory by the way.

Smiling at 4 months.

He didn’t smile by 3 months of age. Hmmm, he must be very serious. He did smile at four months and has turned out to have a very funny sense of humor, thank God!

He didn’t grab for the doctor’s stethoscope. I pointed out that it must not be a “toy” he found interesting.

Because he was so small, I truly felt that he just had catching up to do. Looking back, it was truly a blessing that I didn’t have other children to compare him to. I was worried about him, but I didn’t lose sleep or get a prescription for antidepressants over it. My coping mechanism was the decision I made NOT to judge my son by anyone’s standards but his own. Ahhhh, a lesson. And thus, a piece of advice to mothers of special needs children, and by special needs, this could apply to all of them couldn’t it? Don’t we all have different and special needs? I know I don’t like to be compared to others, especially in a negative way. While developmental milestones are important and not to be ignored, they should be put in proper perspective. And I didn’t disregard the pediatrician’s advice when she referred him to therapy at 4 months of age.

Find a balance that works for you! Remember to take it one day at a time. Find support – you are not the first and you won’t be the last to have this experience. If you have a newborn not meeting milestones, I’ve been there and I’m 10 years ahead of you on the spectrum so trust me when I say that your child is a gift. Your child is the way he/she is for a reason.

What will happen to your child with special needs if something happens to you?

I was about 5 months pregnant when one of my favorite cousins called me up and said he was in town, could he take me to lunch. We didn’t spend a lot of time with my dad’s side of the family when I was growing up so I hadn’t gotten to hang with Jason very much at all – but the times that we had spent together were full of laughs so I was excited to have some one on one time with him. We set a date at a popular lunch spot in Lewiston, Idaho…Zany Graze.

He arrived before me and was already sitting down at a table when I got there. We started with some small talk and delved right into family gossip and when that was out of the way, I soon learned the true reason my cousin had asked me to lunch. He wanted to sell me some life insurance.

I was 35 years old and had no husband and no children. I wasn’t counting the one on the way because he hadn’t arrived yet and to be honest, I was having a hard time connecting to the whole feeling of being a mother and having to worry about what would happen to this unborn child if something were to happen to me. Jason didn’t have any kids – but he was engaged to a woman who had one and he explained how he was very attached to her and tried to explain the feeling to me. I wasn’t buying it – and I didn’t buy any insurance that day. He probably felt like I was cold and was going to be a horrible mom to my kid. I’m sure a lot of people thought that – let’s just say I wasn’t one of those giddy pregnant women with a framed ultrasound pic in my purse.

My son was born a few months later and because he had arrived by C-section, we had to stay in the hospital for a couple nights. The nurses gave me the option of keeping him in the room with me OR leaving him in the nursery. I found out within hours of his birth that I did in fact have the mother gene. He didn’t just sleep in the room. He slept snuggled up next to me – not for his sake, but for mine. It felt weird to be that close to a person for 9 months and then have him physically removed. Don’t get me wrong – I was ready to get him out of there – as any (sane) full term mother will admit!

Phoenix was born in November. The following August, he was diagnosed with cerebral palsy. His father and I had closed on a house that same month and were starting our life together as a family. The timing was finally right to get life insurance. I placed a call to Jason. Apparently, he had burned out on selling life insurance (imagine that!) and was no longer in the business. But he did refer me to a former colleague at Northwestern Mutual and I set up an appointment to meet with him. I purchased a $100,000 Whole Life policy and a $200,000 term policy on myself. How we came up with the numbers was I figured how much it would be to pay off the house. I wanted Phoenix to be able to grow up there with me or his father if something happened to one of us.

So at the same time I bought a policy on myself, I also purchased a $300,000 term policy on his father, who I was not married to – but because we were on the deed together and because we had a child together, it was allowed. When purchasing life insurance, the “insurable interest” doctrine states that the owner of a policy must demonstrate that he or she is dependent in some way on the person whose life is being insured. Here is a little tidbit for those of you single mothers out there who might be unsure about the future of your relationship with the child’s father. Buy an insurance policy on the father while you are still together. And here is the most important part: make yourself the owner and the sole beneficiary of the policy. Did this cause friction in my household? Yes. Did my baby daddy think I was being shady? Probably. But guess what? We aren’t together anymore and I still own that policy – which means that he cannot change the beneficiaries. He can’t designate that the proceeds of the policy be split between his four children. If something happens to him, ALL of the proceeds will go to Phoenix.

My son is four now and for those of you who have a child with special needs, you know that as they grow out of the toddler stage in become a young child, the extent of their disability becomes more apparent. You can finally get a feel of whether they will walk, talk and even whether they will someday be able to live on their own. My son is going to need special accommodations all of his life. I still have hopes that he will be able to live independently and take care of himself. But I have grave concerns about what would happen to him if I were to die before he graduates from high school.

If you have similar concerns it is TIME TO PREPARE A WILL. A morbid task, yes. But I actually had fun doing it because it forced me to sit down and dream big for my child. What if your child had tons of money – what could they do with it? Where could they go? What could they buy that would bring them joy? Where would you want them to go to school? What special equipment could they get that you haven’t been able to buy because of cost? After you have brainstormed about all of this, then you will know how much more insurance you might need to buy. I now have almost $1 Million in life insurance and I bought it before I was 40 while I was still healthy so the premiums would be set. Obviously, you don’t want to buy more than you can afford. But each month when I pay the $105 premiums, I feel good about it. I’ve got a back up plan in place that doesn’t suck!

Here are a couple of things that I incorporated into my will and special needs trust:

1. My son’s father lives in Washington. If something were to happen to me before Phoenix turns 18 and he wishes to stay in Arizona to finish out school with his friends, I have language in the will providing for a family member or friend to come to Arizona to care for him and have their rent and expenses paid to allow that to happen. That includes dad. If dad wants to move to Arizona, I’ve provided for it.

2. I have language providing for the purchase of a car, adapted as necessary, for my son to own and drive when he turns 16.

3. I have named people in the will who I want to be on his “team” of caregivers and advisors – who will research new treatments and therapies to be paid for by the trust.

4. I have suggested that my son take a trip around Europe or around the world after he graduates from high school. The language directs the trustee to pay for him and 3 of his closest friends to take this dream trip.

5. College is paid for – wherever he wants to go. If that ends up being a trade school, fine. If he wants to go to film school, great. If he wants to learn how to basket weave, that’s fine too. I want him to follow his heart and I have encouraged this in writing!

6. I have set up the disbursement schedule for every 10 years or so beginning at age 30. I have peppered the will with my dreams for him, including buying a house, traveling, etc.

Despite the fact that I am a paralegal and consider myself a resourceful researcher on the internet, I still hired an attorney to prepare my will and special needs trust. It gets tricky when state resources and social security are involved and I didn’t want his benefits to be taken away from him because he inherited a bunch of money.

It doesn’t take a girl scout to know that it is better to be safe than sorry and we should all hope for the best but prepare for the worst. I am without a doubt my son’s biggest fan, his biggest advocate, his friend, his entertainer and of course his mom. No amount of money will bring me back if I were to die. But my hope is that my dreams for him can survive my death and keep his mind open to a world of possibilities and a life without limits.

Adaptive Equipment. Where to Start?

When my son was four months old, he started Physical and Occupational Therapy. His pediatrician had referred him to therapy because he wasn’t meeting his developmental milestones. She had also referred us to a Pediatric Neurologist to get a diagnosis – but this appointment was 6 months away. It was a very scary time. I, like most people, am extremely fearful of the unknown.

I was selling real estate at the time and was blessed to have a job that allowed me to attend all of Phoenix’s therapy sessions and medical appointments. He qualified for early intervention services and we started Occupational and Physical Therapy sessions once a week at St. Joseph’s Regional Medical Center in Lewiston, Idaho. His OT was Julie Olszko. A middle-aged woman, well established in her career, she had seen a lot. I’m sure she could have diagnosed Phoenix with cerebral palsy after our first visit but of course that wasn’t her job. When I mustered up the courage within myself to ask her what she thought was wrong, she voiced her suspicion that it was CP. I will always appreciate her honesty because talking about it during that time made the eventual shock of the diagnosis somewhat anticlimactic. “Okay, he has Cerebral Palsy…that’s what we thought.”

Her version of this story would be fun to hear, particularly her impressions of me, a mother in the first stages of the journey. Filled with denial and tons of hope, my son was going to walk. There were whispers that he might not and I simply could not accept this possibility. I spent hours on the internet, researching potential treatments and “cures” for Cerebral Palsy. If I had had the money, we probably would have traveled to China for Stem Cell Treatment. One night I was researching stem cell therapy on www.stemcellschina.com. The site is pretty cool – you can see before and after videos of children who have received stem cell injections. I was drawn to a little boy from Portland, Oregon who was a few years older than Phoenix. He seemed to be similarly affected. He was walking in a cool contraption that appeared to be spring loaded – he could bounce up and down as he was walking and he didn’t have to hold onto anything. He looked so happy and free. I wanted that walker for Phoenix.

Phoenix was in daycare and it was time for him to graduate out of the infant room into the toddler room. The logistics of that transition were a nightmare – he could not sit up without assistance and he couldn’t stand or walk so how could he co-exist with active little kids running and walking around him? He would be tripped over, kicked or even worse, laying by himself in the corner of the room. My mind was finally opening up to the world of adaptive equipment. A walker would allow him to be at the same level as the other kids.

Julie had tons of catalogs of adaptive equipment. Surely, it wouldn’t be hard to find this particular walker. Not so. It didn’t seem to be in any of her catalogs and the pictures she showed me of other walkers quite simply brought my ignorance to the surface. I did not want my son to look handicapped. Even as I write this, I am ashamed that I even had (and still have) that thought. It is all a part of the lessons I was put on this earth to learn – what is important and what isn’t. It is a natural desire to want to fit in and I didn’t want my son to be different. I used to wake up in the middle of the night and go out and sit on my front porch to bawl my eyes out. I sobbed, thinking of my little boy as a teenager, being teased or bullied or ignored. If the equipment scared me, surely it would alienate his peers. What I was forgetting was that I grew up during a completely different time. I don’t know about other Generation X’ers, but I did not grow up with any disabled kids. How is that possible? Obviously, they were shuffled away to the special education building or campus, completely separated from the mainstream classes. Society has evolved. Part of what has made that evolution possible are the amazing advances in adaptive equipment. The equipment makes it possible for children with disabilities to participate.

It took a little bit of digging (thank God for the internet) but I finally found the manufacturer of the walker I had seen on the stem cell site. It is the Mulholland Walkabout Gait Trainer and I would recommend it to anyone who has a child who has mild to moderate cerebral palsy. (http://www.mulhollandinc.com/gt_gaittrainer.php)

How much does it cost? Around $4,000. I personally had to have a fund raiser to buy the gait trainer for Phoenix. God Bless the community of Lewiston/Clarkston for their generosity. I had a single spaghetti feed dinner and was able to raise all of the funds necessary to buy the walker. He was almost two at the time.

So what should be the first piece of equipment you buy? Depends on your child, of course. But the reason I felt this one was the obvious choice for my son was that it allowed his brain to make the connections of putting one foot in front of the other and to know the feeling of walking. To feel the freedom of being able to propel himself. Most importantly, to stand at the same level as his peers. I didn’t want him to go straight into a wheelchair, because then it would be like I gave up on the prospect of him being able to walk someday. I am now okay with the possibility that he won’t walk – however, I am not the one who needs to make that decision. He does. I want to keep his body active and his muscles and bones healthy so that he can continue to attempt to reach that goal, if he wants to. If he doesn’t want to walk, I’m fine with that.

When we go out, I always give him a choice. Do you want your walker or do you want your wheelchair? He always chooses the walker. The joy on his face when he is walking down the street or through the mall makes people smile. They approach us and say, “That is the coolest thing I’ve ever seen.” I would have to agree.

“Big Mistake. Big. Huge.”

I bought my dream house when I was 36 years old. It was mid-century modern (Frank Lloyd inspired), built in the early 60’s, had a flat roof, big beams on the ceiling and windows throughout the house overlooking the Snake River. Two short years after buying it, the dream was over. The economy had taken a turn and so had my relationship with Phoenix’s father. Luckily, we were able to find a buyer and didn’t have to walk away or even short sell it as many people are having to do. Phoenix and I relocated to Arizona where I had lived for 13 years before my relationship started with his dad. Yes, it was tough going from my 2000 square foot dream home to an 850 square foot two bedroom apartment, but I can honestly say I had joy in my heart when I signed the lease. I felt like I was back home in Arizona, my son was with me and I had a job. Happiness.

The apartments were built in the early 90’s and had two floors. When I was younger, I never wanted to live on the ground floor. It didn’t feel safe. Now, I didn’t have a choice – Phoenix was 2 1/2, had special equipment, and stairs were simply not an option in our household. The manager was great when I signed the lease. I explained my situation and said I needed a first floor unit with parking very close by because I would be carrying Phoenix from the car to our home and then would likely be needing to return to the car to get the rest of my stuff, groceries, etc. There was a different parking spot assigned to that particular apartment number but the leasing agent reassigned a covered spot close by to the apartment and wrote it right into the lease.

Other than the neighbors upstairs stomping around, the apartment was a pretty nice place. Phoenix and I settled in and he attended the early learning center at United Cerebral Palsy of Central Arizona, where he also received all of his therapies and in the morning, he was bussed back and forth to Desert Winds Elementary for Development Preschool where he received more therapy courtesy of the school district. The apartment was pretty far from my work (about a 45 minute commute), but we needed to live close to UCP, simply because of all of the resources they had at their Deer Valley campus.

We had been living there for about 3 months when I came home one day to find someone parked in our spot. The leasing agent had given me the number of the towing company to call if this happened so I called it and stirred up a bit of drama in doing so. Turns out, ownership had changed hands and a new tenant had moved into an apartment that was “connected” to my parking spot, the one that they had reassigned to me at the time I had moved in. I went into the leasing office and explained my situation, that I have a disabled son and why the special arrangements had been made for me. They told me I would have to speak to the manager. When I spoke to the manager, she told me to park in a handicapped parking space, which was uncovered. At the time, I had not yet registered my car in Arizona and did not have a disability placard or plate so I felt like an ass parking there. Yes, the spot was close to my apartment BUT I had to walk through gravel to get to my apartment, or walk all the way around the building to access my unit via the sidewalk. It wasn’t right. No matter how I argued my point, the new management was not listening and refused to give me my parking spot back.

As I write this I think about Julia Roberts in Pretty Woman where the snooty salesperson refuses to help her and she later returns after having spent craploads of money in another snooty store. She looks at the snob and says, “Big Mistake. Big. Huge.” Blankity Blank Apartments did not know who they were dealing with.

I started looking at other options and found a house for rent in the neighborhood. It was shockingly affordable, had tile throughout and was three doors down from Phoenix’s elementary school. It was one of those times in my life (and I’ve had many since having my little angel in my life) that I felt VERY blessed and VERY taken care of. That house was simply too perfect for us at the time and God handed it to me on a silver platter. I knew I was going to potentially suffer some serious consequences by breaking the lease with the apartments…but I started thinking about how they had literally broken the contract by giving away my contractually assigned parking spot and I wrote a letter explaining the entire situation and giving them notice that I was vacating the premises.

About a month later, I received my final accounting in the mail. They claimed I owed them $4,000. I probably would have left them alone if they would have left me alone. But they didn’t. So I contacted the Arizona Attorney General’s office and filed a claim of discrimination against them. They had been put on notice verbally and in writing of the special accommodations that my son required. The prior owner had made special accommodations for us with the reassigned parking spot and the new owners had taken it away. It was not SAFE for me to walk through the gravel carrying my son from the handicapped spot to our apartment. At the end of the initial investigation stage, the attorneys for the apartment complex offered to settle the case by removing their claim against me for the $4,000. That’s nice…but I thought it might be kind of nice for them to chip in for my moving costs. They paid me $500. Big Mistake. Big. Huge. (Okay, so not exactly HUGE, but an “I told you so” nonetheless).

I have a new mindset as the mother of a child with special needs. Before he came into my life, I didn’t need any special accommodations and I am not a member of a protected class. But I have learned to keep my eyes and ears open, watching and listening, knowing our rights. It also doesn’t hurt that I’m a paralegal 😉

We have made many strides as a country to include and accommodate individuals with disabilities but we still have a long way to go. Do your part – know your rights. And don’t be afraid to fight when you or your loved one are victimized.

A Village of Angels

One of the most touching moments I’ve had as the mother of a special needs child happened in August of 2007. It was the night of my first fund raiser, a spaghetti feed I held at my childhood church, Our Savior’s Lutheran Church in Clarkston, Washington. There had been a great turnout and I had lots of help from friends and family. I was raising money so Phoenix could get his very first piece of equipment – a gait trainer/walker that would allow him to stand and walk by supporting his core. It would allow him to finally graduate to the toddler class at daycare and play with the other kids his age. The walker had a price tag of $4,000. My medical insurance plan had refused to pay for it and so had the state of Washington. About four weeks prior to the event, I had lunch with a small committee of friends and we planned the event. In my mind, I wondered how many $7.00 plates of spaghetti would I need to raise $4,000? I was prepared to have multiple fund raising events. But it turned out that wouldn’t be necessary.

Phoenix in his walker

The fund raiser was over and the clean up was done. Phoenix was asleep and I was sitting in bed when I opened the envelope of money that had been collected that evening. There was cash, of course, but then there were the checks. There were multiple $50 checks, a few $100 donations and even a check for $800 from P.J’s godfather. I cannot explain the feeling of love that washed over me in that moment – it was overwhelming, and something I had never felt before. I realized that this was one of the benefits of having a child with special needs. This was a feeling that very few people ever get to experience and the amazing thing is, it happens a lot.

Good people are all around you. They will offer you tickets, buy your dinner, offer to help you at the grocery store, in the parking lot, etc. Open your heart and accept the help.

If it weren’t for the help of the many angels who have come into my life, I do not know where I would be. An old African proverb states that it takes a whole village to raise a child. Phoenix has his own personal village of angels doing the job. May God Bless them all.