About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Friday, April 29, 2011

matthew is back at four winds

I dont know what to do with my sadness, and I am so tired but yet I can't sleep.....I know that I have made the decision that is best for matthew, and for all of us, and I know that matthew needs his meds altered, and I know that by going to the hospital, we will likely end the cycle and matthew will come home healthier, but that doesnt make me less sad.

I miss the nonstop chatter that is matthew.
I miss the nuances, that sometimes make me crazy
I miss the fact that my son is not the healthy boy I thought he would be.

I hate that Matthew struggles.
I hate that matthew has a hard life
I hate that his hard life makes life harder for the other 2 boys and for me.

Why did his brain have to be damaged?

I can only hope that the doctors can help, and that a new mixture of medications and dosages will help Matthew.....but for tonight I am sad, and the house feels a little too quiet without my Matthew.

Wednesday, April 13, 2011

Medicaid Waiver Status for matthew

I am a very proud person- I do not like to accept help, and I feel it is very important that I be an independent person, especially financially. That said, I am the director of a not for profit preschool program, which is another way of saying I work hard for 40 plus hours per week, but there just isnt a lot of money that goes into making my salary!

When I first found out that Matthew was struggling with Developmental issues, I was encouraged to apply for the medicaid waiver, and I was appalled. After all, why would I need medicaid for Matthew? Did someone think I was incapable of paying for Matthew's pullups? medications? etc.... It was explained to me multiple times that the Medicaid waiver was there to offer respite support and to help pay for those expenses that were above and beyond those of a typically develping child. For a while I scoffed at the idea, insistent that I didnt need help, and then when Matthew was 6.5 and still wearing pullups, I decided that it might just be time to further investigate this program.

At that time I was paying for pullups for my 6.5year old and my 5year old and diapers for my 2.5 year old, and I was breaking the bank. In addition Matthew was on a lot of medication, David was on a lot of medication, and I was paying a lot of copays for the 2 of them, and I realized that we were not going to be able to be financially independent with these expenses. Around this time, Matthew began to struggle behaviorally more and it was apparent that I was in need of more help and the other boys were in need of some time without Matthew so that they could decompress from the stress he was adding to our house, and so I decided to look into the Medicaid waiver program.

After lots of waiting, Matthew was approved for the medicaid waiver program and shortly afterwards David was approved as well. I quickly realized that the medicaid waiver was not for me, but it was truly for my boys. When I was not spending hundreds of dollars on diapers and pullups, there was money that I could use for us to do things as a family. When matthew was with his respite provider, I had time with David and Jacob where we could do things just the 3 of us, AND Matthew had time with an adult who was there just for him. It was time that he could do some fun things, and the respite provider could work with him on different skills like proper behavior when he was out in the community, money management skills, playground behavior and more.

Currently, Matthew's medication alone would cost well over $300 per month if I had to pay for it out of pocket, and his doctor expenses would be around $200 per month, in addition, he is still in diapers at night and those would cost an additional $150 per month. Add to this that David's needs are similar, and it simply is too expensive to care for a child with special needs without support.

Sadly, we are now in the process of getting matthew approved for permanent medicaid waiver status, and it is possible that he will not qualify. Matthew is one of the children who easily fall between the cracks in our society. You see, he does not clearly fall into the category of a child with a psychiatric illness, but he also doesnt clearly fall into the category of a child with a developmental illness.

If he was a child with a psychiatric illness, he could receive respite and residential habilitation, but he would not receive the financial benefit of medicaid. As a child with a developmental disorder, he will receive the benefit of respite, residential habilitation and the coverage of medicaid. he has an IQ of 66, but his diagnosis are mood disorder not otherwise specified and Fetal Alcohol. The determination as to whether he qualifies as a child with a permanent developmental disorder requires that we prove that he 1. has a developmental disorder that occurred before the age of 18- he does, he has had support sincehe was 18 months of age. 2. that he is unlikely to outgrow these delays- I would assume that if we were goingto see him outgrowing his needs taht we would be seeing more growth at this point, and him catching up to his peers- sadly the delays are widening as his peers are gaining skills at a fast pace. 3. That his disabilities are developmental in nature and not due to another cause- Matthew was matthew since he was a baby- he has not changed. That said, it took doctors and specialists a long time to determine what disorder Matthew had and so there are a lot of records that give a lot of confusing information- some doctors said matthew was on the autsim spectrum, but as he got older it became very apparent that he wasn't on the autism spectrum. Some doctors have said that Matthew has a mood disorder- that is likely true, however the mood disorder would not cause learning delays and social disabilities.

It is most likely that Matthew has a developmental delay that is due to a brain injury which was caused by alcohol used by his birthmother when he was a fetus. However, now there is no contact with his birthmother, so it is impossible to gather the information that states that she drank while pregnant with Matthew. But, guess what is needed in order to give a firm diagnosis that would qualify Matthew for the Medicaid Waiver? Proof that Matthew's mom drank while she was pregnant with him.

I am so tired of circles and circles of beaurcracy. Matthew deserves the supports that are provided to him through the office of developmental disabilities services. By qualifying for these supports, Matthew has the best opportunity to have his needs met as a teenager and young adult. matthwe will likely need support throughout his life- he will need a job coach, he will need someone to help him with money management, he will need someone to make sure that he is making smart choices and decisions. Qualifying now for the medicaid waiver means that these supports are in place as matthew gets closer to adulthood.

I will continue to do the leg work necessary to try to ensure that Matthew qualifies, but it just seems to me that life should be a little more simplistic- I know that there have to be standards in place that ensure that only people with true needs are being served by federal programs, but truly it seems like we are splitting hairs as we try to determine whether it is a developmental or a psychiatric disability that is affecting a child. Fetal alcohol syndrome leads to both cognitive challenges (developmental disabilities) and mood disorders ( psychiatric disabilities) the question of which came first should not be of prime importance- the question that needs to be asked is how do we help this child and this family to ensure that the child is supported in the best ways possible.

15q11.2

That is the name of David's chromosomal disorder. What it means is that a very, very, very tiny duplication was made on the top of David's 15th chromosome. The impact of this duplication ranges from nothing at all to complex developmental disabilities......David is one of the Bloom boys, which basically means he does nothing half way....he has decided to go full force and make sure that he takes full advantage of any and all implications that this duplication can have on his body.

This duplication is known to cause autism like developmental delays, seizures, speech delays and motor delays. Apparently all of the doctors who have seen David who have tried to put their finger on what exactly is the reason for david's delays have all been correct- he has symptoms that appear like autism spectrum disorders but cannot be completely defined as autism spectrum disorder. He has always had speech delays and motor delays, and well the seizures, they have definitely had an impact on him in the past and even though they are now well controlled, they are still occurring infrequently.

What does this mean in the long run for David? Likely that he will continue on his developmental path in life. He will learn, but his learning will be slower and will require a lot of intensive teaching.

he will require time to process information, and to learn new skills. He is medically no more fragile than he was in the past, and thankfully there are no other implications of this duplication than what we are already dealing with,so that is great news.

I am thankful to have an answer to the What question for David, I am trying to make peace with the "why" question....why did this happen? Why did it happen to David? And I am moving forward.....baby steps, but I have stopped obsessing about the name and researching it online...and that has led to me feeling more peace.